Monday, March 1, 2004

Antibodies (CH14.18) 3/2004 - 6/2004

Dad's Diary

Antibodies (CH14.18)

6:20 AM 3/1/2004


Who would have thought?? A tremendous amount has transpired over the last few days and, to be honest, I can't remember I single thing. It has been an absolute blur. I am happy to say that we got out of the hospital on time and everyone has been accounted for. Sydney has had a difficult time with the adjustment. We are not sure how much is related to the monoclonal antibody treatments and how much is related to the fact that there is a new baby around the house. We know that she has been fighting low glucose levels, low red blood cell counts, and loss of appetite. What we don't know is whether it is the cause of some misbehavior. I can only imagine what is going through her mind but it is quite a change from the normal routines that she had grown so accustomed too. At moments she is tremendously loving and shows every sign of the Sydney we all know and love but at others Cybil appears and there is nothing that can be done to placate her. Luckily, "Rice", Graham, or "the little cracker" as I have begun to call him does not seem to be too bothered by the whole shindig. This morning we have an appointment at the clinic where we are hoping that Sydney will receive a blood transfusion. We have noticed that when she is running a quart low that her behavior changes and that would certainly be an easy solution to what we have seen over the past week. On the flip side, that would also mean a full day at the clinic. In addition, Graham has a 1:30 PM doctor's appointment with Dr. Debbie to make sure that everything is going as planned so that will make for a full day of parenting for sure.

I am also glad to say that I have finally recovered from whatever it was that ailed me. It is hard enough to summon my powers as Super Dad when I am healthy much less when I am feeling under the weather. Lynley is doing splendidly. Although she is plagued by the usual "girl stuff" that follows childbirth she is happy and healthy. We have done a good job complementing each other as parents and are both receiving the necessary sleep when needed. I have much more to say but the creatures are, once again, stirring. I am tired but I continue to be full of "purpi". Perhaps later I will get the opportunity to say more. Here is to another day in the life.

5:10 AM 3/2/2004

Yesterday was perhaps the longest we have seen in a while. It was also one of the most difficult we have had in this journey. It started off in the morning with a clinic visit. We were expecting the day to be long because Sydney would need a blood transfusion. We were wrong. Although her counts weren't spectacular they were well above transfusion levels. This took both Lynley and I by surprise and I am guessing that this is another one of those entries for the annals of "You know you are a parent of a cancer patient when..." As I have mentioned before, Sydney's attitude changes when she is due for a blood transfusion. She becomes irritable and ornery. The difference between the moments before the transfusion and the moments after are like night and day. Well in our case more like Cybil and Sydney. Lynley and I were sure this was the cause of her irritability and were actually looking forward to the blood transfusion. We thought we would go in to the clinic with Cybil and come out with our sweet Sydney again. As I look back on this incident I had to laugh. I remember, all to well, the days before cancer when the thought of tainting my precious young princess with a blood transfusion would have sent me into an aggressive fit of nail biting. Yes, at one time in my life, not so very long ago, I would have thought that this was a major procedure with lots of scary risks. Now, my mind has changed and I look at it through these Neuroblastoma coated goggles and see it more as a behavior modifier. Right or wrong, it catches me as strange. Regardless, a transfusion would not be meant for Sydney yesterday which meant that her irritability and behavior were a parenting issue and oddly enough I just happened to be a parent. We discussed our concerns with Dr. Eames and talked about the multitude of possibilities that could be sending Sydney into Cybilville. On the face of it we have done everything right in our efforts to bring Graham into our family but her life has been complicated by many other mediating factors. Perhaps it was low glucose, malnutrition, or something that has stemmed from being out of the hospital for so long prior to this treatment. There really are no answers but there are thousands of possibilities. Luckily, having the letters SD (Super Dad) emboldened across my chest I should be able to figure this one out. This is a parenting issue. This is normal. I can do this. It sure is funny how I forget.

Another surprise of the morning was the fact that Sydney was to start her oral chemotherapy yesterday. I was taken by surprise. Even after all of the research and planning that I had done I has sure that it would not start until this Friday. After all, I had created charts and calendars. Nevertheless I was wrong and starting yesterday morning it became our duty to coerce Sydney to swallow 4 pills (horse pills for Sydney) per day. The pills are approximately the size of M&M's. We have practiced teaching Sydney with M&M minis but this indeed would be a much tougher challenge. This would be one of the most difficult things I would have to do to my daughter since diagnosis and what would raise the stress level of the day well over the boiling point.

Sydney's oral chemotherapy is actually Accutane. This is the the same stuff they give to teenagers to rid their hormonal bodies of acne. Ironically, it is also effective at ridding little bodies of Neuroblastoma in high enough doses. Well it actually does not rid the body of little neuroblastoma cells but what it does is aid the body in causing the little neuroblastoma cells to differentiate. It helps them grow up into normal nerve cells instead of cancer cells, so to speak. Unfortunately the pills are geared towards bigger bodies and mouths and, more unfortunately, Roche, the manufacturer, does not offer it in any other formulations, nor do they plan to. I guess there just isn't enough money in making it easier for these little kids with neuroblastoma to swallow. (I know cheap shot, but I am a bitter, underwhelmed, sleep-deprived daddy - bear with me) Accutane is also very sensitive to both air and light. Within seconds of being exposed to these elements it is transformed into another isomer which makes it ineffective for its intended purpose. Another problem with it not being swallowed whole is that the medicine is known to irritate the oral cavity and the esophagus. So, that basically leaves us with three options. Ideally we would want to her to swallow them whole. In the short term, I can assure you that this will not happen. Sydney has tried with all her might and this simply is not possible in the current state of affairs, so, that leaves us with letting her chew the tablet (our second option) or poking a hole into the capsule and squeezing the rust colored jell out and mixing it into food.

Aaah a creature is stirring, I will have to get back to this later. I have a purpose.


5:40AM 3/4/2004

Something snapped in my mind after the drama of the day before yesterday. It all became clear and I am, once again, comfortable in my skin. I think we, as parents, get frustrated with the day to day work of living and sometimes forget what counts. I rarely get overwhelmed but indeed I was. I was sleepless and tired. We had the busiest week in our lives filled with tremendous joy but also significant worry. Amidst all of this we had normal life. We had several doctor's visits and lab visits. We had to get our less than cooperative daughter to swallow pills that were not intended for her little mouth, we had to fight with insurance companies, we had to schedule surgeries, we had to pick up medications, we had to care for a new born, we had to care for a child with cancer, we had to go to the grocery store, we had to make dinner. In short ,we had to live. I was so consumed by making sure I was accomplishing all of these tasks and that I was being a good father and Lynley a good mother that I forgot what this was all about. I was "doing" and I was going through the motions, but, that was not what I got into this game for. I was full of action but this is not about action. I was giving quantity, but not quality time. Once you scrape all of life away this is really about a family. This is about a beautiful baby girl whom I love with every ounce of my heart and about a newborn son who is just beginning to see how wonderful life and love are. Once I realized that this was not about all of the crap that floats around the edges of our lives and that it was simply about my family it became much easier. I was once again able to connect with Sydney. Don't get me wrong. I have spent time with her. I have cared for her. I have played with her. I have "done" all of the things that I was supposed to do but I wasn't adding any value. After the day from hell I realized that it isn't about the actions. It is about the heart.

It is difficult to explain but as I read and reread my diary entries from the past month, Sydney became an object of my words. To me it just did not seem like I was in this with her. Yes, I was doing all of the Daddy things but something was missing from my words. I was so focused on cause and effect that I was missing what was really important. In short, I could not see the forest for the trees. Once I realized this it became so much easier. The pressure was relieved and I could focus with all of my heart on what was important. It isn't about the medications or the diaper changing. It is about the life of one little girl and one little boy. This whole journey is about the love that we share and the moments and the memories that I have with them. I still don't feel that I have made myself clear. Perhaps, that is why it took me awhile to figure it out. Perhaps, an example would work. Two nights ago we were tasked with getting Sydney to swallow her Accutane. Although we had practiced with M&M's she would have nothing to do with the pills. I kept my cool but it was frustrating. We had to get her to take the pills. There were no options or choices and yet we were all frustrated by a child who would have nothing to do with them. I felt like I was trying to force feed her. I had a task - get the pills down - and I had a target - Sydney's mouth. It was enraging, angering, and frustrating. Although we tried to keep our presence of calm, cool, and collected all of these feeling were still boiling inside. This is the point at which it hit me. It is not about the stupid pill or getting Sydney to take them. It is about Sydney. At that point she was an object of my task and that was not what this is supposed to be about. If I am to be a good father it is about her and making her comfortable with the process. It is about sharing her emotions, feelings, and concerns. I needed to change from doing things with her instead of to her. That moment in time reminded me of why I chose to be a parent. I wanted a child to love and nurture and share all of the wonderful things that I have learned in life. I chose to have a child because I thought life was wonderful and I wanted to share that gift with someone else and I am lucky enough to have the opportunity to do it with Sydney and Graham. Once I regained my sight and understood this concept it became very easy to do this all again. The next night we gave her the pills she was still stressed but, instead of trying to coerce her with hours of holding, begging, and pleading, I simply took her outside and talked to her. We talked all about the pills. We were scared and we both cried and cuddled. We knew that we had to take our pills and in the moments following Sydney chose to take them on her very own. She had a great moment of pride for herself and I got to have one silently as well. We both overcame something last night and once again I received the gift of perception from my daughter. It was the same task as the night before but instead of doing it to her I did it with her and it made it "all better." I will have to remember not to forget. It really is all about perception isn't it. Thank you for reminding me Sydney. I will love you forever, I will love you for always. My baby girl you will always be. God I love my purpose.


7:00 AM 3/4/2004

A little bit of a late start this morning. I had the late shift last night. Lynley and I take turns at night to try and keep each other sane. Unfortunately, we are off to the clinic early this morning so this entry will be short. Yesterday was much better for everybody. Well, for everybody but Graham. The poor little man had his penis reduction surgery. Okay, fine, it was actually his circumcision but I like how the other sounds. The funny thing about it was that his surgeon was the same one that had performed all of Sydney's surgeries. We were quite comfortable with his expertise in performing the procedure to say the least. I tell you, after all that Sydney has been through I certainly see these minor procedures in a totally different light. It was odd combing through the halls of Cooks' without Sydney. It felt a little strange and there was certainly a look of shock on people's faces when they saw us with another one in tow. The procedure went smoothly and shortly we were back in the car making the familiar trip home. Sydney is getting better at taking her horse pills. There is no more crying or screaming although some procrastination is always in the mix. The look of pride when she completes the task is truly heart warming. It makes me reflect. I can't remember the last time I felt such pride in myself but I remember feeling that way when I was young. This isn't a pity party. After all, I am full of myself. I have great pride and joy because of Sydney and Graham. It just makes me think of the happiness and joys of childhood. I think, as adults, we have been tainted by life. When was the last time you felt sheer joy and pride about a task you had accomplished? Maybe we, as adults, should be patting our backs more often. It sure looks fun to be so proud of the little things that you do everyday. Needless to say, it was another great day of parenting and I got another gift of perception from my purpii. I can't wait to see what today holds. It may even include a nap. I am off to my purpose.


6:00 AM 3/5/2004

It is now day 5 of Sydney's Accutane (oral chemotherapy). I can officially classify her as a pill taking expert. We have developed a routine. Every morning and evening I make the announcement, "Sydney it is time to take your pills." At first, the statement sent Sydney screaming in the other direction but, now, she gets excited and runs to the back door. You see, twice a day Sydney and I grab a blanket, a bowl of ice cream, two horse pills, a spoon and head out onto the back porch. Out there she climbs onto by lap and snuggles into her blanket where we sit to enjoy a nice bowl of ice cream together. Generally, we start off by talking about everything we did or everything we are going to do during the day. The conversation always leads her attention away to some inanimate object outside in the backyard that fascinates her. That is all right though. She is two and although the conversation isn't intellectual it is always fun to participate in. It has always been said that kids say the strangest things and Sydney is certainly not an exception. We will be talking about the pictures that she painted during the day having a nice, special moment together outside and the next thing you know she will burst out with something like "There is poopoo in the grass. I love it. I love poopoo." This statement will lead to a five minute discussion of our love for doggy doody. Perhaps she is trying to get my attention away from the task at hand or maybe she is just creating a delay tactic to avoid taking the pills but the random statements are as routine as the time we spend together. I would like to be able to take some knowledge away from this, grasp some nugget information, let it be one of the many life lessons that I have learned from Sydney through this journey but, for the life of me, I cannot figure this one out. A love of doggy poopoo is just plain strange and what does it have to do with the price of eggs in china anyway. Regardless, at some point during our discussion of the gross inanimate object of the day Sydney will blurt out "Ready!!" with a smile and open her mouth wide. This is my cue to feed her the pills in a spoonful of ice cream. She will chew the capsules for several minutes. This is quiet time. A time of intense concentration followed by jubilous celebration, the reopening of her mouth to show me that it is empty, and the statement "All gone Daddy!!" At this point we go running through the house to show everyone that her mouth is empty. We show Momma, we show Graham, we show Uncle Jay, we show the cats, the dogs and just about every living creature within running distance. There is dancing and celebration. This is the moment of pride that I was talking about yesterday. It is pure, raucous joy in her eyes. There really is something to it. Perhaps the next time I pop an Advil I might just do the same thing. It looks like just too much fun. After the fanfare, Sydney and I retire back to the porch where we finish our bowl of ice cream. It is usually accompanied with kisses and giggles. Who would have thought that this awful process that started just four days ago could be the start of such a memory and such a positive experience between father and daughter. It was a gift, a silver lining to an ominous cloud, and proof that good can come from bad and that things are not always as they appear on the surface. Yes, regardless of the fact that I have to routinely enter discussions on the subjects of love and doggy dodo, I am one lucky, lucky Daddy.

Sydney should start showing the signs of this treatment this weekend. We are expecting dry chapped lips, dryer skin and the possibility of rather severe rashes. We are pre-moisturizing her with cream that has vitamin E and gobs of chapstick. Hopefully, we might just skate by with mild irritation. On another note we have finished her morning routine of the GM-CSF shots. Labs yesterday indicated a white count of 29,000, yes, I said thousand. This is a far cry from the counts of 2,900 that we have been used to seeing. It is well above normal but it is as expected from this treatment. Hopefully, the little cells are working overtime killing any microscopic disease that may be left. On another note, we have created a new website for Graham here, although it is in its infancy (as is he) it includes some great pictures of the little man. He is doing great and he has made a nice transition into our lives. I sure love the little cracker.

My purpose calls....


5:20 AM 3/8/2004

Let's see. Where should I start. Friday afternoon was the highlight of the weekend. Our family went to the zoo. It was a perfect day and we figured that, it being early in the season, crowds would be down and it would be relatively safe to take Graham and Sydney out in public. So, Lynley, Sydney, Graham, Uncle Jay, and I hopped in the car and headed over to the zoo for a refreshing hour at the zoo before it closed. We all had a good time and for once in a long while it felt completely normal. The evening was capped off with a relaxing early dinner with Chance and Preston at Joe T's. It turned out that Saturday morning would begin an encore presentation of the Robertson's. They dropped by unexpectedly early Saturday morning with doughnuts and it was decided that we would all walk down the street to the park. For those of you who don't remember, Truman Robertson is Sydney's love interest and although their love has been challenged by Sydney's isolation it is clear that love is still in the air. These are the same little cootie laden little boys that we have been protecting Sydney from over the past year and I took special steps to stay in between them all morning. It was a great start to the weekend but a little stressing trying to protect my daughter from Truman's lecherous advancements. Boys, what can you say? Oops, I had better watch my mouth as I have one now. Sydney was incredibly happy to spend a couple of hours with her friends and it was so nice to see her playing with others for a change. It was normal and I think we had all forgotten what that was like. Outside of getting Sydney a hat and lathering her up in sun tan lotion and vitamin E there were no other medical considerations or worries. After nearly nine months of this journey I had forgotten that something so normal was even possible.

Sunday was different. Sydney has started to show the effects of the Accutane. Her skin is clearly staring to dry out and some nausea began in earnest in the morning. Nausea is not a side effect that happens in all kids but it seems that Sydney can always find a strange side effect to endure in almost any drug that she is given. Nausea occurs in anywhere between 5 and 20 kids per 100 and is usually considered an immediate side effect. If Sydney's nausea has be caused by this it would be considered more of a delayed effect which has us in a bit of a quandary. I combed the ACOR list (my weapon against all that is neuroblastoma) and found that many kids there had many of the same experiences. After about an hour following Sydney's morning dose her ears turned bright red and she started complaining of "belly owies." Within minutes she had tossed up her breakfast. We gave her some Vistaril for the nausea and shortly thereafter she had fallen asleep. She developed a fairly significant rash on her face and ears but it had disappeared within about twenty minutes. As with everything in this journey we are not positive that the cause of this side effect is the drug or something else. We kept her medicated throughout the day and we did not experience any other episodes even after her nightly dose. Mentally Sydney's attitude has improved over that of the past few weeks. She has been happy and comfortable in her skin. We may never know what had gotten her in such a funk following the last round of antibodies but it sure is nice to see her happy. She still has moments of toddlerhood-dom but, for the most part, she is an extremely happy, loving little girl. We are hoping that the Accutane does not change this, after all, it is known to have this effect on these little kids. For the time being, I am just going to try and have as much fun as we can spending time together.

Graham (a.k.a Rice) continues to do well. He has a bit of a stuffy nose but if I remember correctly that can be a pretty normal occurrence in newborns. He is pretty laid back and, thankfully, not to fussy. Sydney continues to show more and more interest in him and has begun to help with some of his upkeep. We still have to be careful when the two of them are together because Sydney expects him to be fully functional. I think she got her sadistic side from Lynley but she is always interested in torturing him somehow. Yesterday she was trying to play catch with him with a big bouncy ball. If I had not stopped her beforehand I think she would have bounced the ball off of his head until he was old enough to throw it back. She is extremely curious about him and loves to point out his features. It is fun and all but I wish she would not actually make contact when pointing at his eyes and nose. Something tells me that this is small potatoes in the bigger scheme of little brother torture that is going to appear in the coming years. If I remember correctly Lynley threw a dart in her brother's skull and hit his noggin with a golf club all before the age of five. Sometimes I am so very thankful for being an only child. I wish the best to you little cracker but it seems as though we are surrounded. Once again it is time to run. My purpose calls...


7:10AM 3/9/2004

Guess who had late duty last night? I guess you could say it was men's night in. This morning I have a guest typist, Sydney - the happy face maker. So if you see an occasional smiley face you will know where it came from. Sydney is already in full force this morning. Yesterday was pretty uneventful. We have been able to manage Sydney's nausea extremely well with Vistaril. She continues to take her pills with a smile and is about to earn her black belt in pill chewing. As time has passed she has gotten to the point where she is excited to take her pills and although they are always accompanied with ice cream she will usually take them in the first bite. We are having occasional bouts of anger that usually end in a complete fit. It is really difficult to figure out what is normal and what is a side effect of the medication. Lynley and I know fully well that two year olds are two year olds and they will have their moments but, not having any prior experience in this area and having the additional complication of administering a drug known to cause these side effects, we are doing our best to discipline her. Sometimes we feel it is necessary and at others, although it is embarrassing and maddening, we believe it is best to give her time to work out her angst on her own. It is a strange balance because we never know what is the "right" thing to do. I guess, like every thing else on the neuroblastoma roller coaster, we will take the ups and the downs and muddle through them as we can. By the way, Sydney is continuing to help me type this morning. God forgive me because I am telling her that I am writing "Sydney is pretty and smart" over and over. By the time you read this Sydney you will be eighteen and you will be trying to find your way in the world and learning by our example, whether you like it or not. You will probably find out that we as parents make mistakes all the time but we do the best with what we are given. Since you have now seen me lie to you I feel that I need to justify it. It is not good to lie unless you are dealing with a two year old. In that case your only chance of survival may, in fact, be a lie. Good luck, someday you will walk in these shoes. So, in review, it is okay to lie to a two year old little twerp but never to your parents or anyone else. Well enough is enough. It is late already and their are parents to bathe, a baby cracker to care for, and one little snot to make happy faces for. My purpii are demanding this morning.


4:40AM 3/11/2004

I guess this will probably be a rather long entry. I am uncomfortable. I find myself in the all to familiar place of being stressed, worried, and, for me, out of my element. The last two days have been a whirlwind. There has been a ton of work to get out the door at the office which has left me working constantly. I have definitely been burning my candles at both ends as I have also spent my usual amount of time with the kiddos. Lynley noticed that I was being short the other day. She was concerned because I wasn't my usual talkative self. We really have a great relationship and she is a team player in my psyche. She was under the impression that it was due to my lack of sleep when caring for "Rice" on "Men's Night In." It might as well be known. I can accomplish anything when I have had my daily dose of sleep but when I am without it I can be a bear. It is not that I am mean but more that my tolerance level goes down and I retreat into my shell. I really don't think the lack of sleep was the cause of my funk but rather a combination of everything that is complicating our lives right now. I have many concerns, both at work and at home, and I am running out of time.

Sydney has slid into a funk along side of me but, at least she has a good excuse. We have seen a huge change in her behavior and there is no doubt in our minds that it has been caused by Accutane. She is short tempered, easily frustrated and, generally disagreeable. We continue to give her Vistaril to combat the nausea but we have been pleasantly surprised by its positive effect on her demeanor. It is like night and day. About fifteen minutes after we give her a dose of Vistaril she turns back into the sweet loving child that we have grown to become accustomed to. Unfortunately, it only lasts a short while and then Cybil returns. Everyday it has gotten a little worse but it has happened so quickly we feel sure that it is a medical cause and not a behavioral one. I don't know whether that distinction makes it any easier for either Sydney or ourselves but I am somewhat comforted by the fact that it is a temporary condition. For the time being she is a handful but we are doing everything we can to try and make her happy in her own world. We have tried to comfort her as much as we can and we do our best to help her work through her angst but, for the most part, she is just one unhappy little girl. She is not mad at anything specific but rather anything that moves in her world. She cries much of the time and I just get the general feeling that she is not comfortable in her skin. Needless to say, I can not wait until Monday when we will be officially done with this round of oral chemotherapy. Unfortunately, it will also be the start of perhaps one of the most scary treatments that she will have to endure and, with it, a two week hospital stay. Yes, on Monday, Sydney begins her IL-2 treatments and that is yet another thing to worry about. I think I may wait until tomorrow to worry about that one.

Yesterday, Graham had his official two week check up. He is growing well. He is now up to 7 pounds and 4 ounces. His checkup was considered a complete success - or was it?. One of the questions Dr. Debbie asked Lynley and I was whether Graham was making eye contact with us. We quickly answered yes but after further reflection throughout the afternoon we both became more and more uncomfortable with our decision. It began the game of "Make eye contact with Graham." I think we answered the question the way that we did because Graham looks like he is looking around. There are no obvious problems. His eyes aren't cloudy and he is reactive to light. We had both assumed that his glances at us were, although fleeting, just short bouts of eye contact. Additionally, since neither of us balked at the question we both assumed that the other parent was making eye contact with him. Thus, the conundrum. After purposefully trying to make eye contact with Graham, we have learned that we are not actually making eye contact with him. I even called Dr. Debbie last night at home (boy, isn't she glad to have us back as regular patients!!) to talk to her about it. I asked her what to look for and what we should worry about. Immediately after getting off of the phone I felt a little better but, now, I have had a nighttime to think about it and research it. Needless to say, I am worried. I simply can't help it. You would think that as much as I had cherished the first couple of weeks with Sydney I would remember how and when she made eye contact but, alas, I do not. I just don't have a frame of reference and it is driving me nuts. I just want to know that he is okay. I want to know that he does not have infant cataracts, glaucoma, or any of the other eye problems that can lead to blindness or other permanent conditions. I want to know that he can see and that, although he is not making eye contact, everything is okay. I just don't know how to go about getting the answers. I am in that all too familiar place of fear and I do not like it.

So, what do I know about the eyes? Not a lot -- yet!! I know that it is not extremely unusual for newborns not to make eye contact. It has just been recently that they haven proven that they know newborns can see. I know this could be developmental. He came into this world a few weeks early and maybe his eyes were not fully cooked. After all, if you follow it by his due date he would have been born yesterday. I also know that there are a few conditions which, when caught early, can be totally repaired. I could toss out a bunch of medical conditions but at this point they could just be remote possibilities and could surely just be the paranoid ramblings of a father on the edge. So for now, I am not going to go through them. What I am going to do is - well.... something!!! I imagine it will begin with another phone call to Dr. Debbie. Poor thing. She should have thought twice about accepting us as patients and friends. I need to find out what he has been tested for and what can be ruled out as a result of those tests. I also need to know what we can test for, right now, that has not been done. After all, for some conditions, catching it early can mean the difference between seeing the world and never seeing it at all. With this information I can establish a game plan. I can do something. Hopefully, it will all be for nothing. Hopefully, it is all just the paranoid thoughts of parents. And, hopefully little Graham is just as healthy and wonderful as we want him to be.

I guess you can probably tell that this has been a tough few days for me. I am still committed more that ever to being a good Daddy and husband. My priorities are in order and I am ready for action. Today will be busy with a clinic visit for Sydney, more work at the office, solving the eye contact mystery, and just being a good husband and father. It will definitely be a day full of purpose and action. I love you my family.

6:00 AM 3/12/2004

We made it through yesterday. Sydney's clinic visit went well although it was quite long. It was a busy, busy day at the clinic. For Sydney, it was a basic checkup. Her counts were good and everything looks to be in order for our admission into the hospital. Sydney has nausea, diarrhea, peely skin, and, of course, attitude. All of which is somewhat anticipated and is considered par for the course. We are just hoping for a nice relaxing weekend around the house before the next leg of our race begins on Monday.

This next round of treatment starts with a four day continuous infusion of IL-2. For you medicos:

A human recombinant interleukin-2 (IL2), aldesleukin is a lymphokine which is developed from a genetically engineered E. coli strain containing an analog of the interleukin-2 gene. In vivo, aldesleukin has demonstrated the ability to activate cellular immunity through lymphocytosis, eosinophilia and thrombocytopenia and production of cytokines including TNF, IL-1, and gamma interferon. The drug is rapidly distributed into extravascular space following IV administration. It is eliminated by metabolism in the kidneys with little or no active protein excreted in the urine. After completing an infusion, approximately 30% of the dose can be found in plasma. Following a 5 minute infusion, the distribution and elimination half-life is 13 and 85 minutes, respectively.

In english, IL-2 stimulates the growth of certain disease-fighting blood cells in the immune system. The idea behind this therapy is that by combining the 14.18 antibody with IL-2 it will increase the anti cancer effectiveness of the therapy. 14.18 is a protein found in mice that have developed an immunity to human cancer. It is specifically attracted to the GD2 antigen that sits on the surface of neuroblastoma cells. The antibody 'binds" to the NB cells, and thereafter recruits other elements in the immune system to come and destroy the cancer cells. Ch14.18 is a human-mouse "chimeric" antibody directed against GD2. The antibody can be administered alone or paired with other elements like GM-CSF (granulocyte-macrophage colony-stimulating factor, also called sargramostim) or IL2 (interleukin-2) that enhance their anti-cancer activity. (GM-CSF stimulates the production of white blood cells and platelet precursor cells. IL-2 stimulates the growth of certain disease-fighting blood cells in the immune system.)

It all sounds great until you read about the side effects of this particular round of therapy. It reads like a horror story. Common side effects include: fever, chills, malaise, diarrhea, vomiting, nausea, tachycardia, rash, pruritis, asthenia, anorexia, eosinophilia, thrombocytopenia, anemia. Occasional side effects include: Capillary leak syndrome, arrhythmia, acidosis, hypomagnesemia, hypocalcemia, anxiety, dizziness, respiratory disorder, cough, rhinitis, exfoliative dermatitis, insomnia, leukocytosis, hypotension, stomatitis, infection, pain, abdominal pain, abdominal enlargement, weight gain, edema, leukopenia, oliguria, and elevated creatinine. Unfortunately, there are more rare side effects that happen in about 5% of cases which include: hypersensitivity reactions, stupor, coma, psychosis, apnea, myocardial infarction, angina, sudden death, elevated bilirubin, SGOT, SGPT, confusion, somnolence, headache, rash, coagulative disorder, anuria, acute kidney failure, dyspnea, pulmonary abnormalities, and erythema. Yep, this is nasty stuff, and unfortunately, it is the same drug that shut this trial down for several months while the FDA sorted it out. In Canada, there were two deaths related to dosing errors of this drug. It was found that they were physician error and many new procedures were put in place, but, it still scares the daylight out of me.

It will be a nail biting week and I would not be surprised if Sydney ends up in the ICU but I am hoping for the best. This 4 day treatment will be repeated the following week but the second time it will include the 14.18 antibody and all of the additional side effects that we saw in the previous round of therapy. It is likely that we will stay in the hospital for about two weeks but there is always a possibility that we could get out sooner. I guess it is never to early to start hoping and praying.

On another note, we are becoming more comfortable with Graham's eyes although we are trying to find out more information about exactly what has and has not been tested. He seemed more responsive yesterday but, then again, I could just be nuts. Well, it is late and I am off to another busy day. I will be in touch this weekend. I am off to my purpii, one of which is tickling my toes.


6:00AM 3/14/2005

We have arrived at our last full day at home. Tomorrow at 6:00 AM we will be heading to the lovely Cook Children's Resort and Cancer Spa for another fun filled round of treatment. As usual Sydney is excited about going back to the hospital and, as usual, Lynley is not. I, however, am torn. I once again find myself in the ying yang position of being happy that we are going because we will be doing something but on the other hand not particularly comfortable with the IL-2 treatment. Of all of the therapies that Sydney has endured over the past 9 months this undoubtedly scares me the most. As is usual, we have done our research, we know what to watch out for and, to the extent possible, we know what to expect. I have my dosing charts handy and I have combed through the side effect listings and there resulting treatments repeatedly. IL-2 comes with its own chapter in the book that I have created, "Daddy's Little MoAB Instruction Book" and I have detailed out each possible side effect and what should be done medically if one should occur. I know it seems silly but it is something I can do. It keeps my mind focused and keeps the other Mark hidden in obscurity. Today, we will finish the rest of the preparations. There is a tremendous amount to be done. We need to pack and get the house ready for departure. There are also a million little "honey dues" to be accomplished. I am guessing that yesterday would have been our last "relaxing" day around the house. From now on, it is all business.

Sydney, or Cybil rather, has had a difficult week. I am so happy that we will be finishing this round of oral chemotherapy on Monday. We will have a 14 day break before we have to start talking those awful pills again. I know the next two weeks will not be fun for Sydney but, in all honesty, I think she will be far happier once she is off of those nasty pills. I would love for her to be able to smile again without it being followed by complete rage. Accutane is tough because there just does not seem to be anyway to connect with her on a consistent basis. For her, moments of happiness and comfort are short lived and much of her day is spent in a complete funk. Simply put, nothing makes Sydney happy. She is impossible to please and, worse, impossible to comfort. She is totally demanding and completely dissatisfied. I only wish I could bring her some happiness. Knowing that the Accutane will stop tomorrow gives me great hopes that I will once again be able to bring joy into her world and, hopefully, some comfort in what I know will be a trying time for her. Lynley and I love her with all of our hearts but it has been a frustrating week for all of us involved. I just wish we could fix what ails her. Perhaps, a breath of fresh air and time away from the nasty drug will bring her some peace. For the time being we will continue to put one foot in front of the other and continue to let her know that we are there and that we love her. Well, my purpii have started rustling and another day is starting well before I am ready for it. I keep reminding myself of my purpose so I do not forget in the melee.

2:55 PM 03/15/2004

We are back at Cook's and, for the most part, we are just plain tired. Graham decided that the night before an early morning hospital admission would be a great night to be demanding. Furthermore, every time he woke up, Lynley decided it would be a great time to wake me up and give me an earful of how unhappy she was about breastfeeding my son every two hours through the night. I have noticed that much about newborn life is my fault. It is funny. When she was in labor it was MY fault but after he was born she could not believe what a wonderful thing SHE created. When she changes his diaper and he pees all over the wall, the bed, and the front of her shirt she is really annoyed by MY son but when he is cuddly just before falling into another restful slumber HER son is God's greatest gift. And during the day as she shares a very special time nourishing HER son with breast milk all is right in the world yet, ironically, it is MY own damn fault when he expects the same at night. Graham this is your first lesson in women. It is always your fault. Accept it and move on. You will live happily ever after.

Now, on to another note. We arrived on time early this morning and Sydney has started her treatment of IL-2. To tell you how strong this stuff is, Sydney is receiving just under 4 ml over a 96 hour period. That just amazes me. Sydney seems to be tolerating the treatment fairly well although she arrived in rather poor shape. The last week of Accutane had brought along with it nausea, vomiting and diarrhea which has left her underweight and dehydrated. Her blood pressure this morning was well under normal and in addition she will require a blood transfusion later this afternoon. Before we had even started IL-2 we were already performing measures to regulate her little body. This did not leave us with a warm feeling in the pit of our stomachs but you do not always get what you want. Right now, Sydney is sleeping comfortably. We are praying and hoping for the rest of the day to be uneventful (and definitely more uneventful than this morning). I am off to my purpii.


6:20 AM

Every time I step into back into this surreal world I regain perception and perspective. It is always a little bit of a shock to my system but, once again, I feel in touch with myself. It sounds strange doesn't it? But when we get to leave this place and our narrow focus becomes complicated by life we forget what really is important. I think it is like anything else in life. I become complacent and my mind once again becomes filled with all of the little mitigating minutia that makes up my day to day life. I become more consumed with working, paying bills, accomplishing tasks that I forget how real this is. I forget how fragile life is and that this struggle continues to go on day after day. I guess it is a protection mechanism or perhaps all of this has just become so second nature, so common, that I forget how real this really is. When I am out of the hospital I believe that the worst is not going to happen to my daughter. There is no changing my mind. I am absolutely positive. But once I get back in these walls I realize how real of a possibility it is. I get first hand experience at seeing that this is not a game and that kids do lose there lives. I guess it is kind of like the age old adage, "You never know what you have until you lose it." Being here, inside these walls, I get to see it everyday. I get first hand experience and all of a sudden I am forced in the position to realize what I have. I get to be thankful and appreciative for having Sydney by my side. So in this sense, I love coming back in here. I get my emotional batteries recharged and I realize how lucky I am, and more importantly, I appreciate it. It really is perspective but it is a healthy dose of realization and yes, although it carries both good (appreciation and realization) it also brings the bad (fear and reality). I wish it was a pill that I could bottle and sell. The ability to truly appreciate what you have is a wonderful thing. All parents get to feel that feeling every once in a while. That feeling of pure joy, love, and happiness. Yes, this is would be the feeling that comes before your realize that there are diapers to change, breakfasts to cook, and work to be accomplished; the feeling before the chaos of life gets in your way where you truly get to appreciate and reflect upon what you have. That realization, that feeling is the gift that I get whenever I dawn these halls and, once again, I am surprised by the good that can come from this crazy roller coaster world.

Sydney has done well or, as they say, unremarkable. We have had a few rashes, pulse issues, and blood pressure issues, but all have been minor and easily remedied. Sydney is doing much better that I had expected but then again I was preparing for the worst. In reality, we probably could have anticipated a relatively smooth first week of IL-2 but I don't think Lynley or I would have admitted it. There is still a long road to hoe and too many possibilities to mention but we are very happy with her current state of being. We continue to hope today and tomorrow will go smoothly but we both know in the pit of our stomachs that next week will be the tough one. Then she will have a much stronger dose of IL-2 with the addition of monoclonal antibodies. There is already talk of just sending us straight to the ICU for the treatment. Regardless of what they choose, we are quite pleased with our current position. Sydney is better, too. It has been two days since she stopped taking her oral chemo and I noticed a change almost immediately. I can connect with her and even though she does have outbursts they seem typical of a two year old. It is so nice to have my baby back and even better that I feel that I can share this roller coaster ride with her. It really was difficult for me not to feel our strong connection was reciprocated. We have such a close relationship and it was tearing me up that I could not bring her peace. Accutane really is nasty stuff but the good news is that there is light at the end of the tunnel. I love my purpose even more when she knows it.

6:50 AM 3/18/2004

Another day has arrived at beautiful Cook's. Unfortunately, last night was another rather sleepless one. For some reason the EKG leads on Sydney were not reading correctly and it made for a rather "beepy" night. I think I feel more tired after a night of hearing beeps every twenty minutes than I do after a night of feeding a newborn child. It is like water torture. Every time you fall asleep you are awoken to that incessant beeping noise. Luckily, Sydney was so tired she really did not hear the beeps. Yesterday, for some reason, Sydney thought it would be a good idea to skip her nap and that she did. It was clear by late evening that she was in dire need so after pretending to sleep for about 10 seconds she was overcome and fell in to a deep and, so far, continuous slumber. Medically, she is still doing fairly well although yesterday we saw our first signs of fever. This is not too much to be worried about as the documentation states that "fevers are universal." The only problem with it is that fevers could keep us from going home for a brief break before the next round begins on Monday. If we get lucky we could be going home tomorrow. At 9:00 AM today we will begin or 4th and last day of continuous IL-2 until the early part of next week. Sydney has also been experiencing some elevated blood pressure. It is by no means in the danger zone but it is something that we have not been able to get under control. We are hoping that it will start to regulate itself today. Well, my brain is too tired for much else this morning and the words just do not seem to flow so I think I will end here and save my energy for my purpii. So far my lack of sleep has not disturbed the gifts of perception and realization that Sydney has bestowed upon me. I am one lucky man.


7:10 AM 3/19/2004

Our little trooper appears to have made it through this round of IL-2 undaunted. There have been side effects but they were all manageable and, generally speaking, side effects that we have become accustomed to. Quite frankly, I am in shock, but incredibly thankful. Given her "unremarkable" response to treatment we will be able to go home later this morning and spend a nice relaxing weekend at home before coming back early Monday morning for the bigger guns.


Yesterday was good for Sydney but it was very emotional for Lynley and I. You see, in the room beside us, another neuroblastoma warrior lost her life and earned her wings. It is still fairly difficult to talk about. This child who we knew was sick was still full of life. The three year old little girl was tremendously loved by her family - just like Sydney. And I know that there was nothing in her life that she could have done to deserve this - just like Sydney. She was as pure and innocent as any other young child that can be found on this earth - just like Sydney. We would hear her at night through the walls and as we passed by her room. We would see her lying on her bed or cuddling in her father's arms. But, yesterday that stopped. After hours and days of the family by her bedside or gathering in the waiting area just down the hall -- she was gone. A little child not really any different than Sydney succumbed to the very disease that had ravaged our baby girl. I can't really put into words how empty it feels. There was life and love. We could touch her, see her, hear her but, now, she is gone and never to return. Just lifeless silence. Why? I just don't understand...


4:00AM 3/22/2004

It was a nice weekend at home. We spent much of the time with family and friends. Sydney had a great time although she is not entirely up to par. She has still been battling nausea and diarrhea. She is clearly underweight and every time we felt some success by getting her to eat a substantial meal poor Sydney would send the meal right back up. On Sunday it was much better and we finally got three decent size meals to stay in her tummy. Unfortunately, we know that they are probably the last full meals that she will eat for a week. We will be battling malnutrition all week. If the past is anything like the future her appetite will continue to shrink throughout this week of treatment and the challenge will be to get her to maintain her weight. I doubt that we will be able to supplement her waining appetite with IV nutrition until after her treatment. As it is her noodles will be completely occupied with IL-2, MoABs, and Fentanyl. In fact, we are pretty sure that they are going to have to add a new peripheral IV this week just to keep her medicated. Two noodles are just not enough for this treatment.

If I had to pick a time period that I am the most nervous about it would be this week. Out of everything that I have written about regarding the difficulty of this treatment for Sydney, it culminates this week. This is the "big daddy" so to speak. Lynley and I are very nervous but, as always, prepared for what comes our way. Once again, we have studied and researched this particular leg of treatment to the fullest and are as ready as we are going to be. This week will start off on 3 north. After talking to the doctors and nursing staff it was decided that we would start there instead of the ICU. We are happy with the decision as we are all more comfortable with the nurses and procedures that we have had so much experience with. We will actually be staying in the room that Sydney was originally first diagnosed in. It is a big nice room and one that we are comfortable with. It looks like we might even get the opportunity to be treated by Miranda, Sydney's favorite nurse and one that has proven herself to be incredibly competent. We have had a few close calls with Sydney and it has always been Miranda that has identified the problem. We consider her part of our team and one of the family.

Well I have to run as we need to be at the hospital in just over and hour. In short, Sydney will be receiving another 96 hour dose of IL-2 (this dose is 50% more than we had last week) along with daily 6 hour injections of Monoclonal Antibodies. There will be pain and fever which we are fairly accepting of but what we are trying to avoid is the slue of other side effects that I have mentioned in the previous weeks. Her biggest battles to overcome will be blood pressure, heart rate, fluid shifts and electrolyte imbalances. If we can manage those we might just make it through this nasty round. It is time to dawn my cape. Super Dad has a purpose.


6:20 AM 3/23/2004

One day down. Yesterday was a tough day for Sydney. It started out tough and seemed to get tougher as the day went on. As it turns out, Sydney needed a peripheral IV catheter. I think she would have enjoyed it more had they not blown two veins before they actually got one in. She was a little trooper. Although there were screams and cries she sat there still as they fished around in her arm to find a good vein. Finally when they got one it appeared that it would be just right. Unfortunately, as the day drew on, it became increasingly clear that it was not doing its job entirely. We used this catheter to deliver her Fentanyl. We noticed in early afternoon that it was only having a small effect in controlling her pain and, unfortunately, we were trapped between the pillars of time and increased pain. At about 2:00 PM it was clear that she was receiving some relief although it was definitely not complete. We decided to continue to use the existing catheter instead of replacing it as she would likely only have another two hours of pain. We figured that by the time we put her through all of the stress of another poke and waited for someone to do it we would have only gained a short amount of comfort at the cost of some significant stress.

Sydney also had some other battles throughout the day. At first, the Fentanyl sent her into a rage. Apparently we should have ramped up the infusion a little more slowly. She became incredibly itchy and angry. She was like a caged animal with rabies. (Sorry Syd but that is how it looked) We reduced the rate rather quickly and within about ten minutes she was back to herself. By the way, it was probably this fit of rage that dislodged the catheter. She also battled with beepy machines. It was difficult to figure out what was and was not happening. During much of the morning her EKG leads were reporting something very different that her pulseox lead. It was stressful as we did not know what to believe and as her blood pressure, oxygen saturation, and pulse rates were all over the board. She only hit her threshholds, the predetermined rates which dictate that we perform certain medical procedures to bring her body back into balance, on a couple of occasions and they did not stay there for long. So medically speaking she did fairly well. By the end of the day she had blown up like a balloon. Her eyes looked as though she had been through 9 rounds with Tyson ( I say nine rounds because that is how tough she is in my eyes.) Lynley automatically diagnosed the problem as low serum albumin levels. Sydney was showing signs of incredible thirst and we have seen this before. After a quick blood sample has checked by the lab it was clear that Lynley's premonition was correct. We spent the night replacing her albumin and we are hoping to find that it is back in order this morning. Albumin controls how fluids are kept in the body. Generally speaking, low levels indicate that too much fluid is being kept in the tissue. Sydney has also been threatening fever. We have not officially hit the 101.5 mark but Sydney keeps spiking to around 101. It just so happens that every time that she does this she is due for another scheduled dose of Tylenol which brings her temperature back down.

Well another day is about to start and we have a new catheter to put in this morning. I have to run as my purpose calls. We are hoping and praying for a less eventful day and a more comfortable one for my little princess.

6:10 AM 3/24/2004

Sydney has run fevers all day. This time, they are official. She has spent most of the day and night in the 39 - 39.5 degrees Celsius range. That is somewhere between 102 and 103 degrees Fahrenheit. I know I am beginning to sound like a broken record but that, like everything else, is expected. Yesterday, Sydney's pain management was much better and for some reason she did not require nearly as much bolusing. She was quite comfortable with her continuous drip of 8 mcgs per hour. This hit Lynley and I as strange because normally we have had to sustain her at somewhere between 10 and 15 mcgs. On another note, we found ourselves battling fluid retention much of the day. It really is a fine balance. Her blood pressure has been fairly low over the past twenty four hours. To maintain her on the low side of normal requires fluid which means she puffs up like a balloon. We then have to take off the fluids with Lasix which decreases her blood pressure. I have really oversimplified what is happening and there are many other factors at play but those are the basics of the circle of fluid or, as we have come to call it, the IL-2 yoyo.

Sydney is doing pretty well. She lies down in the crib much of the time with her eyes closed. She likes either Lynley or I to lay in the crib with her and hold her hand. She continues to be opinionated and demanding although it is clear that she does not really know what she wants. Much of the time that she has a food craving we will deliver it to her only to find out that she does not want it anymore. We have noticed this tendency whenever she is heavily medicated or in pain and we are quite happy to indulge her even though we know it will probably be rejected. All in all, she knows she is loved.

I really wish that we were closer to the end of this treatment. We are only two days in with two more two days to go and I find my mind wandering to the question of how much worse can this get. So far it has been tolerable because she is experiencing all of the side effects that were expected. But then again, we are only two days in, what more is coming her way? It is a question that I really do not want to know the answer to but I keep wondering whether she will continue to get worse or whether she will get used to the drugs and get better. Obviously, I am hoping for the latter. I really do not want to see her temperature get any higher. I really do not want to see her blood pressure go any lower. I really do not want her heart to beat any faster. And, I really, really do not want her to feel any worse. Well it is time to go. I think I have covered most of what is going on and it is time to cuddle with Sydney and to try and forget it all. I am praying for a better day for my purpose.

6:40AM 3/25/2004


There is not a lot of time to write right now. I am getting really tired of saying this but Sydney's condition is "as expected" and I would sure like it to be better. She has spent the last 24 hours with a fever between 102 and 104 with most of the time spent near 104. Many of her electrolytes are off and she is experiencing pain and discomfort. A steady whimper emanates from her crib. There simply is not enough time to go into detail right now but suffice it to say that if there is an expected toxicity she has it. I can't wait until this is over. Hoping and praying for a more comfortable day. It is time to cuddle my purpose.


6:30 AM 3/26/2004

After a day of high fevers, labored breathing, pain, fluid retention, whacky electrolytes, almost catatonic slumber, and many drugs to try and bring her back in balance; something snapped. The best analogy that I can think of was a rubber band. Sydney kept stretching the outer limits of normal and abnormal. She was slowly deteriorating. Fevers were getting higher, blood pressure was getting lower, pulse was getting quicker, respirations were three times normal and then, at 4:30 this morning, something happened. Everything snapped back to normal. Her fever came down, her vital signs popped back into line and all of the whacky little electrolytes decided to shoot back into normal ranges. It is amazing -- and totally unexpected.

Sydney has completed her last day of monoclonal antibodies and should be finishing her 96 hour infusion of IL-2 at about 9:30 AM this morning. I had anticipated that it would be late this afternoon before we saw any true recovery. Boy, what was I thinking?!? Totally unanticipated and I can not tell you how nice it is to say that. I find my self almost giggling in the quiet dark corner that I am sitting in the room. I can't wait for everyone to wake up. I feel like I am a six year old waiting for Christmas morning. Will Sydney want to play, to eat, to cuddle. I don't really care but I know she will be better. I bet she opens her eyes and demands a milk cup and then sends me back to the kitchen to make it warmer. What fun that would be. You never really know what you have until it has been missing for a few days. I simply can't wait for today.

If all goes well we should be going home tomorrow. It would not surprise me to see a low grade fever this morning but I think we all know it is not caused by infection so it is likely that we would not have to stay a full 24 hours after her fever breaks. Ooh happy day!

I have a little extra prayer going out to another neuroblastoma family here at Cook's that are undoubtedly sleepless and worried about some upcoming scan results. There is thought of relapse quite soon after transplant. I hope and pray it is just another case of slow recovery and not those nasty little blue cells. So, if you have some extra space in your prayer list (and even if you don't), say a prayer for a special little boy. Pray that he has not relapsed. God will know who you are talking about.

It is time to start the day. Let's hope it goes well. My purpose is mumbling and it so much better than moaning.

11:00 AM 3/27/2004

Safely Home!!!


5:20 AM 3/29/2004

I probably should have written down my thoughts prior to today but it has just been so incredibly busy around here. We are still adjusting to another little one around the house. Where shall I start? Sydney finally finished all of the drugs and aside from a few abnormalities quickly returned back to normal. She shows flashes of herself but she also shows flashes of someone else, perhaps, Cybil. There are three challenges with Sydney that we are trying to overcome. First, Sydney has lost some significant weight over the past few weeks. The "random frequent fire" of this protocol just hasn't given her enough time to bounce back. About the time we are starting to finish one round of treatment we are starting the next. We no longer get the opportunity to see her recover from the effects of the previous round before we are providing her with another hurdle to overcome. Regardless, this upbeat tempo has left Sydney frail and malnourished and we have found ourselves, once again, playing amateur pharmacist at home concocting a nightly boost of TPN and lipids to fatten up our junior turkey. The good news is that she has maintained her appetite. In fact, it has even grown. I would guestimate that our little piggy is eating at about 80% of her norm. With her nightly nutritional IV providing another 80% of her dietary needs it should be no time at all before we have her back to her fighting weight. Unfortunately, this morning, we will be beginning another 14 day round of her oral chemotherapy which will undoubtedly put a damper on her appetite. Yep, it is time for daddy to become more clever about getting a 2 year old to swallow 4 horse pills per day. I have, once again, found myself hating Roche for not providing the drug in a form that these kids can swallow comfortably and Sydney has not even begun this round of therapy. The second challenge that we have with Sydney is with her eyes. Sydney's pupils remain dilated much of the time. This could be an effect of either IL-2 or the antibody that she is receiving. It turns out that, although it was not listed in "Daddy's Little MoAB Instruction Book" or any of the official documentation for this trial, the chimeric antibody used in this trial can cause this condition in about ten percent of its patients. The science behind it is actually pretty neat. The antibody that Sydney is using attaches itself to cells that express GD2. Neuroblastoma usually produces GD2. So these antibodies hook onto neuroblastoma cells and then recruit the body's own immune system to try and kill the cell. Pretty neat, huh? The problem that we are facing is that the scilliary muscle, the sphincter muscle in the iris, also produces GD2, so, the theory is that the dilation is caused by parasympathetic denervation. In other words, the nerves in the eyes are "wounded" by this treatment causing the pupils to dilate for an indeterminate amount of time. So what does this really mean? Well, this poorly documented side effect (very few people in the world are aware of it apparently) typically lasts for anywhere from 2 months to about a year. In about fifty percent of the kids afflicted with this side effect it also causes blurred vision in one or both eyes. Sydney is simply too young to express the concept of blurry vision so we are watching her behavior to see if she is also plagued with other vision problems. For the time being it is up in the air. She has sporadically complained about having water in her eyes and she seems to be rubbing them frequently. Both of these items could be indicators of blurred vision but with the sporadic nature of her complaints we just are not sure as of yet. Regardless, Sydney's eyes spend much of there time almost fully dilated. Lastly, Sydney is having some difficulty coping and we find ourselves in the all to familiar position of playing amateur psychologist. Sydney will spend much of the time being the loving, happy, and incredibly adorable little girl that we all know and love and then, without reason or even a breath, she starts crying or going into a "Cybolic" rage. We do not know if it is parenting. We do not know if it is an effect of some of the drugs. We do not know if it is because Graham is now a member of our family. We just don't know why. It seems more than just a two year old fit but, then again, I really do not have another reference to draw upon. When she transforms herself into this alter ego there is no way of connecting with her. She is not comforted my Mommy and Daddy and nothing seems to put the stopper on her behavior other than time. Another item that seems to be different is that she wakes up crying which she had never done before. Sydney used to always wake up with a smile and a "meow" but lately she has done it with tears and cries. I just wish I new what was causing it. I wish I could fix it. With all that she has had to endure already I want her to have joy and comfort and happiness and I just can't seem to bring them to her and, worse yet, I don't know how to fix it. I find myself hoping that it is a side effect of the drugs because that I know will go away. So I leave her with this:


I know you are having a tough time right now and, to be honest, I don't know whether I am making it better or worse. I can say that I am trying and, no matter what it takes, we will figure it out. I continue to be inspired by you everyday. You are such a strong little girl. I only wish that I could bring you a slice of the happiness that you have brought to my life. I wish I could make you understand. One of the lessons that you have taught me is perspective. I have learned, through you, what is important in life and it is a gift I hope to return to you. Because of you I can stay strong when I feel that I have no strength left. I can be happy when everything else around me is crumbling in despair. I can continue to put one foot in front of the other everyday and I can do this because of you. You have shown me the light. You have shown me the power of family and love and that with those two things I can accomplish anything in the world. I only wish I could put my own feelings into words so that I could make you understand how grateful I am for the gift that you have given me. Suffice it to say, I have gained perspective. By the time you are reading this I guess you will be about eighteen and I hope that I have found the words and the methods to show you how to be happy in life. (As a side note, I also hope that you have discovered my logic and wisdom in not allowing you to date until you are thirty.) I hope that you find joy and happiness in living everyday. It is this personality trait, this feeling of being complete, that I will use as my measuring stick to find out how good of a Daddy I truly have been. I can think of no better measurement of my success than your happiness. You have already been through so much in life and you have earned your right. You deserve to be happy. You are one amazing little girl. I am here by your side. We will succeed.

I will love you forever. I will love you for always. My baby girl you will always be.

Love, Daddy

Well it is time to start a new day. I am off to my purpii and another visit to the clinic.

5:20 AM 3/30/2004

Sydney is recovering well. I guess I had forgotten that this ride more closely resembles a roller coaster than anything else. Yesterday was great for Sydney. I don't know what happened and, once again, it was totally expected but Sydney was the perfect little princess for most of the day. She had two outbursts all day. One was at clinic where she had chosen to be difficult for Dr. Handsome and the other was right before bed time. Both tantrums were short lived and probably related to tiredness. I feel much more comfortable with these outbursts. They just seem much more normal to me. The most important factor is that both Lynley and I could connect with her during these little fits. I don't really know how intense a two year old fit should be and I really don't know how often they should be but I am much more comfortable with yesterday's episodes. They just felt normal and they seemed reasonable to me. I must admit and be honest though. Although I do not like the constant second guessing of our parenting skills, the worry about side effects, and the concern over Sydney's psychological welfare I am so comforted that I have these issues to deal with. They seem normal and, after all, that is why I got into this parenting gig in the first place. It is quite a relief from the minute to minute drama that we were living last week. Sometimes I forget in the midst of all of this treatment to just be normal. I still spend so much time worrying about the unknown effects of the drugs and the treatments that I forget to just be a parent. I guess this is one of the harder hurdles for me right now. It is only when she returns to the Sydney that I know - the normal Sydney, the toddler - that I can focus on just being a parent. Then, it all comes back to me and I can just be a good Daddy. It isn't that I am not a good Daddy for Sydney during the other times. My focus is just different. I guess one of me is a parent of a child with cancer and the other one is just Sydney's Daddy. Both of them are an important balance for me but it is so nice to get a break and just be Sydney's Daddy.

We actually received a bunch of good news at the clinic. All of Sydney blood tests came back in normal ranges and her weight was actually higher than it has been at anytime in history. She is up to 12.3 kg (about 27 lbs.). In fact, there was even some talk about readjusting her dosages of the oral chemotherapy to compensate for her weight gain. In the end, however, we decided to wait and see were her weight finally settled out. Her eyes continue to be dilated but reactive and she actually spends much of the day with her eyes in a normal state. We tend to see the dilated eyes in the morning, the evening, and throughout the day in medium light conditions. It really is not to much of a concern for anyone right now as there is nothing that can be done. It will just take some time to work itself out. Unfortunately, the time has come and I must put my pen aside for another day. The creatures are stirring and it is time to be Daddy. My purpii are calling.

6:23 AM 3/31/2004


I am officially calling Sydney's happiness recovery complete. Yesterday was marked by sheer joy, kindness, and sweetness. Yes, sugar and spice and everything nice. There were only two mild episodes of anger which came, appropriately, before both of her daily doses of Accutane. As I had mentioned during the last 14 day round of oral chemotherapy, Sydney literally eats the pills out of a bowl of ice cream. As we drew closer to the end of the last round of oral chemotherapy it became a much harder task for her to endure. In fact, she began to miss doses as the mere site of the horse pills would send her stomach turning and inevitably send the pills back out of her mouth in the wrong direction. Lynley and I both felt a change in routine was necessary in order to try and keep her comfortable with the idea of swallowing the pills. This time we tried new locations, new rewards, and new rules. This time we were far more firm with making her take the pills. There is no needless procrastination. There are no pre-pill cuddle moments. It is all business. I have Sydney sit in an uncomfortable wood chair far from any blankets, toys, or anything to bring her comfort. She receives exactly one spoonful of ice cream which is followed by another which includes the pills. I am not particularly nice during this portion of the pill-taking ceremony. In fact, I am all about business. I resemble a drill sergeant. My goal here is to let her know that there are no alternatives. I also want her to want to take the pills so that we can all go back to being the happy go lucky family of nerds that we are. I know it sounds a little strange. It seems a little harsh and I like the whole ordeal a little less than Sydney. But, it is working. As soon as the pills hit her mouth and her teeth break open the capsules the whole scene changes and the "chew, chew" parade begins. This is partly Sydney's reward but also it is the trick to get her mind off of chewing the pills. We scoop Sydney up and the dancing and singing begins. Yes, the Dungans and anyone else unfortunate enough to be at our house (it is a requirement of all guests) gets into the Congo line and starts singing the "chew, chew" song which will frequently burst out into a rendition of "Go Sydney, Go Sydney, get your pills down, Go Sydney, Go Sydney!!"" The raucous Congo line makes a beeline for the pool in the backyard where we dance, and sing, and yell as we make our way around the pool. This will continue until Sydney has given the sign that the pills have been swallowed. Sydney has a blast. There are giggles and laughter and, thankfully, chewing in earnest. She smiles continuously and loves the praise and fun. If you were to peek over our back gate you might be alarmed (heck as loud as we are you might just have to drive by our zip code), you might think we were all on drugs or, you might be frightened. But, guess what!! I don't care!! We have taken the worlds worst part of Sydney's daily life (not one of our favorites either) and turned it into a great experience and it is working for Sydney. So, call the cops! Complain to the city! Our house is a rockin' and I don't see it stoppin'. Our purpii are happy.


5:00 AM 4/1/2004

The Accutane has settled in and we are starting to see changes in Sydney. I guess it was expected but we were all hoping it would last a little longer. Her lips are starting to chap and her skin is starting to rash sporadically. Of course, we are also seeing changes in her temperament. So far, we can still connect with her. I think we have made some mistakes, however. Yesterday when Sydney was asked why she was so upset she said "It's the pills!!" She said this in mid-afternoon several hours after taking the pills and even more before she would be taking them again. This is actually an interesting intellectual question for me. Does she really know it is the pills that are causing the differences or is she just repeating things that she has heard us say? Does she really realize it? Is she using it as an excuse because we have some how communicated to her that the pills would affect her in a negative way? I really don't know the answer but I am intrigued by the questions. I like this problem. It is a parenting question through and through and it also gives me the opportunity to gain insight into her mind. Part of me wants to believe that she is just mimicking us. Yes, this would mean that I have had made some mistakes by creating the negative connotation in her mind, but I think I would rather believe that than the alternative. The alternative is that she is far more aware of her surroundings and condition than I have realized. It would also probably mean that she carries the burden of knowing that she has cancer. I really do not like that thought. This whole ordeal, this neuroblastoma life, has been so much easier for me to face because I have believed that Sydney is oblivious to her reality. In this sense, as long as Mommy, Daddy, and baby brother are there to love her everything is okay. I always knew that at some point in her life Sydney would have to learn that she had cancer but I always figured that she would learn later on when she was older, when she had the emotional tools to deal with it, and when her memories of the experience had faded. I don't want her to be burdened by the fear and the guilt and the worry. I want her to feel comforted and loved. It is still my job to carry all of those nasty feelings for her. I also believe, whether based in reality or not, that part of Sydney's success is based in the fact that she had been so comforted and loved that she only had positive energy and that was what had given her so much success through treatment. Strange? Unrealistic? Probably, but as a parent you have to cling on to some rationalization. You have to make this make sense and that is one of the ways that I have. So what does this all really mean? What does Sydney really understand about her life? I rack my brain constantly to try and see through her life through her eyes. I only wish I knew. For the time being, I am going to assume that she is just parroting our behavior and our discussions. I am going to focus my conversations that are within her earshot in a positive direction and I am going to continue to blanket her in love. I am simply not ready to believe that she is consciously aware of the burdens of her condition (although it would explain a lot). I am going to see if I can change the tide. It is time to repurpose my purpose.


5:40 AM 4/2/2004

Right before this round of Accutane I declared half time. Although we were staying in the game our team's attitude and spirit was definitely taking a nose dive. It was time for a shift in our game plan. In many ways this really is like a game of football. In the beginning we lost the coin flip and we were chosen to receive. For the first half of the game the other team spent most of the time with the ball and we spent all of our time on defense. We just plum got worn down. I think it took a toll on our perspective and our reality. It is our perception of the reality that dictates our actions and how we feel. For instance, Lynley and I can look at the same situation, the same reality, and see two totally different things and have two totally different reactions. It is this realization that tells me our team needs an attitude adjustment. After months of treatment, without really knowing it, this lifestyle changes you. It isn't one thing that turns the switch. That is why you really don't notice it until something just snaps. Luckily, I have this diary to go back an reflect on. Boy, have I changed! Several times!! Regardless the point is that our lives often get muddled in the details. There is so much going on that we lose sight of the forest for all of the trees. The diary lets me see my life through the third person and I get to see the changes from a global perspective. It is this realization that created a need for half time.

We are forgetting to live a little. If I spent half as much time just playing with Sydney as I did worrying about what was causing a particular problem I might be able to fix it with a simple change of perspective. Reflecting back on our history I notice it every time. For example, when Sydney starts to cry or go in a rage my first response is to try and figure what the cause is and then to analyze what the appropriate response is. It is an extremely analytical process. I am calculating thousands of possibilities in my head trying to cure the problem. In the process I am forgetting to treat the symptoms. A perfect example may be the stupid pills. In all of our discussions about how bad of an effect the pills were having on Sydney she undoubtedly picked it up. If I called them "happy pills" from the beginning I wonder what the past month would have been like? I am learning that there are some things that I can control and I can fix but there are many that I can't. For instance, if Accutane truly is the cause of some of Sydney's episodes of rage it really does not matter. She can't stop taking the drugs. She will either have rage as a side effect or she will not but whether I figure it out or not simply does not matter. What does matter is that I give her the tools to deal with it. Whether it is distraction or a hug, my job is to help her find the tools to work through the episodes. It is my job to give her coping skills. It is my job to treat the symptoms.

That is really what this entire entry is about. That is what half time is about. I need to shake things up so that when we go back onto the playing field we can focus on the things we can control. That has been what the last week has been about and it seems to be working. I don't know whether that has been the cause of her improved attitude and demeanor but I can tell you that our perspective has changed and that might have been all that was needed. It sure will be interesting to see how the future goes. For now I am off to my purpii and this time I am sure our "happy pills" will make today all that much better.


5:20 AM 4/5/2004

This weekend was pretty good for little Sydney. The "happy pill" theory seems to be doing the trick. I can now get her to take the pills within about a minute. In fact, she is even becoming excited at the thought of taking them. It started last Friday, the moment I mention that we are going to take her "happy pills" she goes frolicking to the official pill-taking chair where she happily anticipates the whole ordeal. The moment I arrive with her miniature bowl of Accutane-laced ice cream she covers her mouth with both of her hands. I am not as serious as I once was but I still leave no room for debate. I usually talk in strange voices and sing to her as I explain what is about to transpire. It is a loud and boisterous mixed melody of anything that I can think of and I must sound like a nut, but, on the count of three, her hands give way to an eagerly awaiting open mouth and the drugs are officially delivered. This is followed by dead silence as I place my ear next to her mouth in an extremely animated fashion. And I wait.. I am waiting to hear exactly two crunches, the sounds telling me that she was actually bitten into the pills. I then scoop her up, hoist her onto my shoulders, and head for the door where the congo line officially begins. We continue to dance and sing as we circle the pool. It takes between five and ten minutes for her to finish chewing and swallow the pills. I am hoping to alter the schedule as I would like Sydney to chew and swallow the pills almost immediately. We occasionally see a gag reflex if it takes her too long and I know it will only get worse if I do not find a way to curb the chewing procrastination. It is a fine line. What we are doing now seems to be working so I am hesitant to change what she has become used to but I am also interested in speeding up the process. Not to mention it is quite exhausting to dance around the pool for as long as we do. We have to keep the energy up to keep her mind off of those dastardly pills. Regardless it is going much, much better and I am extremely proud of Sydney's improvement. I never thought it would be remotely easy to get her to take the pills and, minus some physical exhaustion on our part, she is taking them like a champ.

Sydney's physical appearance has drastically changed over the past week or so. We are still providing her with nightly IV nutrition and we can really see the difference. She is a rather fuzzy, chubby little girl and it is so nice to see her fill out. It seems like it has been quite a long while since we have seen her in this condition. It is likely that today will be her last day with the supplemental IV nutrition and, thankfully, she has maintained her appetite. I am really interested to see how much weight she has gained at our clinic visit today.

This weekend we will be going on a trip to Washington D.C. Sydney has been invited to participate in the Easter Egg roll on the White House lawn. We are extremely excited about the opportunity and, to be honest, are just plain giddy at the thought of a vacation. We know it will be a memory to last forever. Well, it is time to go as Graham is beckoning for his daddy. I will have more details to follow tomorrow. My purpii await.

6:00 AM 4/6/2004

Another day of oversleeping. Yesterday was indeed a busy day. It was Lynley's first full day back to work since the birth of Graham (Tiger Woods Junior). We both thought it would be in her best interest that I take Sydney to the clinic alone as she did not think taking half of her first day back and spending it in the clinic would be in her best interest. Sydney was a perfect little princess which was a nice treat for me, especially because the clinic was packed. Apparently, they were short staffed and it was almost an hour and a half before we got to go back to one of the treatment rooms. Sydney spent this time jabbering and, to be honest, I really do not remember a word she said. It was pretty funny, one of the other kiddos that was sitting out in the waiting room turned to his mom and said "Boy, girls sure talk a lot!" The mother was a little embarrassed but I couldn't blame him -- I was thinking the same thing! We played in the play room for another hour before we got a chance to see Dr. Eames. As always, it was great to see her. Medically, Sydney is doing extremely well. Her blood counts came back and although most were on the low side of normal it was only her ANC which was taking a beating. Her ANC was about a thousand which means that she is an infection risk even though her white count was in the normal range. Luckily, we still got the okay for our trip this weekend. Sydney's central line site is also a little red and has produced a little discharge. We have gone to changing her dressing daily and put her on some antibiotics to keep infection away. Other than those items she is fit as a fiddle and porky as a pig. Her weight was up to12.5 kg which is somewhere around 27.5 lbs. For Sydney, that is phenomenal and a weight which sets her all time hugeness record. Due to this, she has been taken off of her nightly IV nutrition. Unfortunately it is time to go as the kiddos are beckoning. I hope I have a chance to write more tomorrow. My purpii await.


5:30 AM 4/7/2004

Wow, a new day has already dawned!! Things have started to really move at a hurried pace with Lynley back to work. We are both extremely busy trying to play catch up in our professional lives and by the time we both get home it becomes a race to try and get everybody fully medicated, cleaned, fed, played with, and put to bed. We are now operating in gears that we never knew each other had. Suffice it to say, that by the time I finish my work day at about 2:00 PM (hey, it pays to get up early) until the time my head hits the pillow at about 10:00PM it has been nothing but a rapid flurry of activity. Lynley is much the same. At times, we both feel that we are operating at two notches past full blast and wonder what we have gotten ourselves into. I suppose much of the drama is just from the fact that we now have two little twerps to love and care for and we have to get our lives back under control in this new environment. Yes, Sydney requires several hours of extra care per day just to cover her medical needs but I don't know how much easier it would be had she not been in this position. If we weren't giving her antibiotics, helping her get her Accutane down, performing a dressing change or preparing her nightly IV we would be, most certainly, doing something else more normal like playing with her or finger-painting masterpieces. So, our sources of high stress and busyness are not coming from the fact that Sydney has cancer. It is just life and the fact that we are getting used to a more hurried pace. I think my greatest source of anxiety probably comes from work. Right now, I am missing about a week or two of work per month due to Sydney's hospitalization. My partners and employees are extremely understanding and helpful but, the fact of the matter is that, they depend on me. I feel guilty every single time I leave the office. I think the difficulty is that they are forced to move at my pace and that is not fair. I try and make up for it on the weekends but it still is not enough. There is simply too much to do and not enough time to do it. By choice, or necessity, or whatever you want to call it, I place my family first and although work is on my short list it is often found on the bottom of it. I really do not know what or where the answer is but it is something that I am going to have to come to terms with. I often wonder what I would do and how I would have reacted if it had been one of my employees or partners that was in my position. It is one thing to be out for a while during a couple of months but quite another when you have been riding this roller coaster for almost a year. Would I continue to be understanding of their needs? Ten months down the road, would I still realize that this was as real as it was on day one? I would like to be really noble and say, "of course" but, the truth of the matter is that, I do not know. At times, on this journey so much of this becomes second nature. You get "used" to having a child with cancer and it certainly does not seem as scary as it did at first. But, even though my mind has gotten used to it, the game has not changed. I wonder if I would have realized it? Where does the responsibility end? I fear in the back of my mind that I would be pressuring my colleague to get back to work. I would be expecting them to focus and to be there and I guess that is were my source of stress and guilt stems from. I just don't know whether I would be as understanding as they have been and it sends a tinge down my spine. Because of this and in order to justify it, I fear that I am trying to live up to my own standard, my own expectancy, and it is totally unrealistic and virtually impossible. There really isn't an answer. The next 4 months will continue to be just as critical and busy as the past and I will just have to come to terms with it. I am looking for the light at the end of the tunnel and I am searching for answers. I know there is a solution. Although I still don't like the fact that Sydney has been chosen to walk through this fire I have learned a tremendous amount about myself. I am definitely a better person for the experience but clearly there is still learning to be done.

Sydney and baby Graham continue to do well. Sydney's central line site has continued to deteriorate but we are watching it closely and praying for it to stay infection free. I am off to a full day of purpose.


5:15 AM 4/8/2004

I am happy to say that Sydney's central line site seems to be improving. Last night's dressing change revealed an entry site which was far less red and there was significantly less discharge. Yes, the antibiotics seem to be working. I was beginning to get concerned that we were not going to be able to make it to Washington D.C. due to her condition. But due to her improvement and the lack of any signs of sickness or fever we should be ready for take off. We have tried to explain to Sydney where and why we are traveling this weekend. She seems to be stuck on the fact that (a) we are going on a plane and (b) we are going to see the Easter Bunny that lives in the bush (aptly named George) next to a big white house. This is yet another example of the wonderful toddler brain. It is just like Christmas morning when she gets an expensive present, discards it, and then spends hours playing with the box it came in. It is funny to watch the family's faces turn to disappointment as the child plays with the box instead of the toy that they had so carefully chosen and purchased for her. I think this is the reason that Santa Claus doesn't wrap the big gifts. He just displays them prominently in front of the tree. He doesn't have to deal with the anguish of a child playing with the 50 cent box instead of the $50 toy. At first, during Christmas or birthdays, I thought that maybe Sydney was missing the point but after a while I figured out that it was actually me that was missing the boat. It isn't about the gift but rather it is about the happiness. It is further proof that you cannot buy happiness. To be honest I don't really remember many of the gifts that we got Sydney for Christmas but I do remember the happiness on her face (and many of the boxes) So, I guess, this weekend may not be about the Easter Egg Roll on the White House lawn, museums, historic landmarks, or US history but, probably, more about the Easter Bunny that lives in the George bush next to the big white house. Furthermore, I am sure that she will be enamored with the hotel room because she gets to sleep with Mommy, Daddy, and baby brother and, undoubtedly, she will want to stay and ride the metro as opposed to getting off to see the historic landmarks, but, I am not inclined to care. It is about her happiness and I am going to get it anyway I can. It should be a fun time. I would love to see this trip through her eyes. My purpii certainly have an interesting perspective.


6:40 AM 4/14/2004

Wow!! I need a vacation! Yes, I know, it may seem like we just took a vacation but you must remember that this was the first time in over a year now that we have taken a vacation and the first jaunt with two kiddos. All things being considered we actually had a pretty good time but, boy, are we tired. The weather was less than agreeable which left us in the confines of our hotel room much of the time. Let's see, where should I begin - the plane flight. This was one of Sydney's favorite "rides." She spent most of her time telling everyone that she was flying the plane to go see the Easter Bunny. It just so happens that we were sitting behind another family of four that was making the same trip. Their two kids were a couple years older than Sydney and Graham but about as evenly spaced. We noticed something very wise about this family. They brought their nanny, and since then, we have realized that was the secret weapon against parental insanity on such a trip. How naive we were! So, note to self, always take a vacation nanny or your vacation will not be so much of a vacation. Regardless, even though we were nanny-less we had a great time. When we arrived Lynley and I schlepped our two little travelers and our bags across the airport and over the bridge to the Metro and parted ways with our model family (whose chauffeur was loading bags into the back of our limousine.) Granddaddy Kip thought the Metro ( a rather clean subway system in Washington D.C.) would be a fun venture for Sydney as she loves trains. He explained the process and we agreed that it might be a fun "ride" and first site seeing adventure for Sydney. What none of us considered was the fact that we lugging several huge suitcases, two kids, a stroller, and a car seat and the fact that it was approaching rush hour. Regardless, as we boarded the crowded railway car we could see our sister family off in the distance driving off in the lap of luxury in their limo. Second note to self, preferred method of travel also includes a limo driver. Within about twenty minutes we had reached our destination and the scramble to jump off the subway train ensued. The subway cars were not designed to accommodate large suitcases, two kids, and a double stroller, but none the less, we made it off the train together - barely. From their it was one short block to our final destination and a few moments of relaxation. At this point Sydney was reaching her mental limits and she was in dire need of a nap so we snuggled her into our bed and gave her a few hours of rest and relaxation. The rest of our first night would include room service for dinner, a large glass of wine for Lynley, and several hours of chasing Sydney around our hotel room.

The next day brought with it beautiful skies and nice weather. We opted for a stroller ride to The Mall. Our hotel was situated just two short blocks from the heart of D.C. action. We spent the morning and early afternoon soaking in the sites and the attractions. We visited the sculpture garden, the carousel, and the Museum of Natural History. Sydney loved the museum and talked about all that she saw - constantly. She was amazed by the animals and the dinosaurs. Within no time at all we were approaching 2:00PM and Sydney's naptime was appearing more and more necessary. We hurried back to the hotel room were Sydney slept for several hours. That night we hired a cab who gave us a tour of D.C. at night. It was really quite beautiful. We saw the White House (where the Easter Bunny lives), the Lincoln Memorial (where the big man sits), the Jefferson Memorial (where the big man stands) and the Capital (where the big men keep Sydney safe.) We also ventured past many of the other memorials and sites and got to see much of the beautiful architecture highlighted by the lights of the night. It was striking and beautiful and unfortunately, the last time weather would really permit any outside adventures.

The next day would be highlighted by cold rain and a trip to McDonalds. We also ventured out to the National Aquarium and the Museum of American History. The aquarium was less than impressive. In fact, I would venture to say that Cook's hospital provides a much larger array of fish and aquatic life. Needless to say, Sydney was unimpressed but we were all thankful to find an indoor activity that did not require several hours of waiting in line outside in the weather. We all had a good time at the Museum of American History, however, Sydney fell asleep almost immediately after dawning the doors. Luckily Graham was awake and eager to soak in the sites. Okay, maybe he was eager to soak in a bottle but, none the less, he was eager. We stayed until early afternoon and then, once again, hurriedly made our way back to the hotel. Unfortunately, that would be our last venture out that day due to inclimate weather.

Well the creatures have stirred and there is much to be done this morning. Sydney's is in pretty good conditionh, however, her central line site has continued to deteriorate. We are in for a dressing change and a morning of meds. Tomorrow I will have time to share the rest of the story and highlight a special moment for Sydney at the White House Easter Egg Roll. My purpii are calling.

5:30 AM 4/15/.2004


The day of the White House Easter Egg Roll was highlighted by cold and rain. We had seriously considered not going because of the weather but we knew that Sydney had really been looking forward to it. She had spent most of her awake hours during the previous days talking non stop about the Easter Bunny who lived under the George Bush at the big White House. So, in typical fashion, I talked to all of her heat cells as Lynley dressed her in her Sunday best and we were off. There are some great pictures of our stroller. We looked like homeless umbrella salesmen. Any space not taken by Sydney or Graham was jam packed with umbrellas and blankets. We ventured out the door and into a cab. Within a few minutes we were at our destination. It took a little while to make our way through security but it wasn't too long before we were smack dab in the middle of the White House lawn. We were all amazed at how close we were to the White House. It continued to rain but, none the worse for wear, I scooped up little, shivering Sydney and we went to stand in the Easter Egg Rolling line. Sydney warmed up rather quickly and although the rain was coming down steadily she was unaffected. She was having a wonderful time spying all of the life size cartoon characters and Easter Bunnies that where running around the White House lawn. As we finally made our way to the front of the line for our Easter Egg Roll "heat" Sydney was eager to participate. I set her down on the lawn, handed her a spoon, and placed her egg next to her feet on the wet grass. It took Sydney a minute to get the hang of it but soon she was trying to push the egg down the lawn. Sydney was dead last in her heat. In fact, everyone had finished when she was only about five feet from where she had started when it happened, perhaps the most significant experience of the trip. A six foot blue and orange dog scooped her up into her arms, grabbed her egg and carried her to the finish. She thought this was the culmination of all that was great in the world. Although she was cold and wet and a little tired, this was perhaps one of the greatest moments in her life. Needless to say, she did not want to leave the doggie's arms. After a few minutes it was all over but Sydney would tell everyone that she saw for the next 48 hours about her exciting finish. It was a very, very special moment in her life. We then capped this experience off with a trip to see the Easter Bunny. As we approached him on the White House lawn I set Sydney down on the ground. As soon as he was alone Sydney went running into his arms. This was the moment she was waiting for. She was incredibly happy and it was this experience and the one just before it that made the entire trip worthwhile. The White House lawn was filled with other activities. There where famous children's authors reading books, face painting, egg decorating and hundreds (okay at least tens) of people in different cartoon character costumes. We saw Barney, Bugs Bunny, Peter Cottontail, Arthur, Elmo, Mr. and Mrs. Easter Bunny and a slew of others, but unfortunately, the cold had taken its toll on the kiddo's. Everybody was shivering so we hurried ourselves back to a cab and finally the hotel. It was a phenomenal experience and there was much more to do at the White House but it just wasn't worth getting Lynley, Sydney, or Graham sick. By the time we actually hailed a cab Sydney was doubled over in her stroller shivering. Once in the cab (and the heater) Sydney perked right back up and we got to hear a fifteen minute dissertation on her experience at the White House. She would continue to tell everyone she saw (whether she new them or not) for the next couple of days.

The afternoon following the Easter Egg Roll was spent at the hotel at the National Childhood Cancer Foundation's luncheon. We got to meet several other families, several of whom had children with neuroblastoma. It really hit me how similar we were. I felt an instant kinship. Here we were, from all over the world, with different histories, backgrounds, and races, yet, we all shared a common language and vision of our lives. I don't know what it is but there is a difference in people that have children with cancer. You can see it in their eyes. I think there is always a little fear in there but there is something else. I think maybe it is hope and an understanding of what is important in life but this was the nicest group of people I had ever met and it was nice to share and hear their stories. I definitely felt a bond and it was an experience I will keep with me forever.

The next day we made our way back to Dallas/ Fort Worth and, no, this time we did not take the Metro. Ironically, our cab to the airport pulled in right behind a large limo where we, once again, found our model family having their luggage unloaded. I certainly have some learning to do regarding the appropriate way to travel. Nanny check, chauffeur check, limo check, the Willard Hotel check. Okay I got it. Now, all I have to do is find an upscale bank to rob. I joke, but they were a very nice family and we enjoyed spending time with them on several occasions. After all, I am young and I have a lot of learning to do.

On another note, this morning starts with a clinic visit. Sydney has several rashes and we are concerned about her ever-deteriorating central line site. We are glad to get the opportunity to have the doctor check it out. We know it will mean another round of antibiotics and at least a week of daily dressing changes but it will be comforting to know that it is not as serious as it feels like it is right now. We have several lab tests and our next round of therapy officially begins tomorrow. This round includes GM-CSF and the ch14.18 Monoclonal Antibody which is far less scary than the last round. Well I am off. I have a busy day today and if I remember correctly it is my birthday. 33rd!! Wow, just like fine wine. I am off to my purpose.

6:00 AM 4/16/2004

Aaah rest and relaxation!!! I tell you I sure needed a vacation from my vacation. Of course, this vacation also includes a regular work schedule, routine clinic visits, and the ever lasting game of "toddler round up" but it certainly feels good. Sydney's clinic visit went well. Her counts all appear to be on the low side of normal. Her rash and central line site continue to bug me but we are all pretty secure with the thought that it was caused by the Accutane. We continue to watch them closely. Sydney officially starts her third round of monoclonal antibody therapy today. She will receive a shot of GM-CSF starting tonight and lasting through the weekend. On Monday morning at 6:00 AM we will begin our next weekly stay at the hospital. She will receive four 6 hour (roughly) infusions of the antibody and it is guestimated that if all things go smoothly we will be out on Friday afternoon. This will be an extremely short update as there is much work to do this morning but I will update again this weekend and I hope to get the pictures of our trip up as well. My purpose calls.


4:40 AM 4/18/2004

Once again we are off to see the wizard. Sydney had a tough weekend. It all started on Friday morning. We believe that Sydney had a reaction to the GM-CSF shot. About two hours after receiving the dose Sydney developed a fever and began having severe chills. At this point her fever was at 101.6. We called the doctor and we were told to give her a dose of Tylenol to see what would happen. Within about 30 minutes her temp was up to 102.7 and it was decided that she should be brought in for an examination and probably hospitalization. She was extremely flushed, she had crouched up into a ball, and she was shivering uncontrollably. In a frenzy we packed up everything and headed off to see the doctor. I'll tell you, Sydney is exactly like a bad car air conditioner. As soon as we arrived at Cook's her temperature subsided, the chilling stopped, and her color returned. She was once again happy go lucky and everything was right in the world. Nevertheless we continued on with her appointment only to have Sydney receive the Good Housekeeping Seal of Approval. We tucked our tails between our legs and returned home. Sydney would spend the rest of the afternoon without any obvious medical reactions to the GM-CSF but she was clearly out of sorts. She had been such a complete angel since she had stopped her last round of Accutane and we, once again, found ourselves trying to help her with even the simplest of tasks without a complete breakdown. That is one of the things that I hate about this therapy. Sydney only has about 3 days of rest after recovering from the oral chemotherapy and then she is thrown right back into the mix. In those three short days we see an entirely different little girl. She is happy and friendly and incredibly loving. The remainder of her time is spent in a funk. She is either uncomfortable due to the pain of the antibodies or mad at the world due to the mind altering Accutane. Later Friday night Sydney once again developed a fever. We gave her another dose of Tylenol and within another two hours she had returned back to normal. We started premedicating Sydney with Tylenol before each and every shot that we gave Sydney over the weekend and Friday would be the last time that we saw fever. Sydney was extremely active but it was also clear that she was out of sorts. She just seems to be having a difficult time coping. Lynley and I are doing our best to help her work through the episodes but she continues to challenge just about everything. Once again, we are find ourselves trying to figure out what are side effects from the medications and what is due to her age. Let me tell you, trying to teach coping skills to a two year old is not easy. It seems to require patience which is the one thing that they are lacking. For the time being we will just have to be patient for her - patient but firm. Well, unfortunately it is time to go. We will be leaving for the hospital in just under an hour. I will update you as time allows. My purpii await..


5:10 AM 4/20/2004

All in all, yesterday was fairly uneventful. Right now, this treatment does not seem as scary as it once did. I remember back to our first round of this therapy and how incredibly uptight I felt but with time and experience much of that has passed. Sydney tolerated the treatment very well. She had moments of breakthrough pain throughout the day but we were able to manage it fairly well with the happy button on the PCA pump. We started her Fentanyl at a lower dose yesterday and opted to not give her a loading dose (basically a large bolus of pain medication) By doing this we were able to stay away from the itching and the semi-psychotic initial reaction that Sydney has to the drug. We also kept her continuous dose at a lower level than we normally do. We are extremely lucky, our doctors give us a lot of leeway in dealing with her pain medication. The simple fact of the matter is that we never know how Sydney is going to handle the pain. Maybe by the end of round five we will finally figure it out. It seems to change a little bit every time that we are in here and we are thankful that they give us such power to control her pain. It is kind of like balancing on the tight wire. Too little pain medication and she will writhe in pain. Too much and she will break out in hives, become itchy, and, on occasion, go into a rage. By yielding some control we are able to walk this fine line. Overall, Sydney is in pretty good condition this time around. Her counts are low (when compared to a healthy person) but great for her and pretty darn good for a heavily pretreated child with neuroblastoma. We are seeing some signs of her treatment as this morning brought with it some wacky electrolytes but, all in all, she is in good condition. So far, her weight has maintained and her appetite continues to exist. Obviously, we are hoping and praying for another day like the last.

Mentally, Sydney continues to have struggles - as do we. It is so hard to know what the right things to be doing in this situation are. I would think it would be hard enough to deal with the behavior of a two or three year old when they are healthy much less when they have cancer. This has really been a struggle for me as of late. There are just too many complicating factors. Now, first of all, I know I have a tendency to over think a problem, but hey, that's how I work a solution. So here it is in a nutshell (okay, more the size of a coconut shell) I have a long term goal. I want Sydney to be a happy well-adjusted half a cup full type of person when she grows up. I would think this is a hard enough task for any parent to instill in their child without them carrying the cancer card in their back pocket for the rest of their life. The way I view it is that the most important ingredient that I have to give Sydney is two cups of coping skills. Ordinarily, I would probably say it would just take one cup of coping skills but she will have extra burdens to work through so I think an extra cup will add just the necessary amount of flavor to her life. The problem is that I do not know what makes two cups of coping skills. The answer I have to find is what do I do today, tomorrow, then next day, the next year and so on to instill this in her. To find this answer I search within myself to try and find out what has made me an inherently happy type of person and then I try to create "life lessons" for Sydney aimed at trying to help her develop her own life skills tool box. The biggest problem is that I have not walked in her shoes. She has had and will continue to have tough life experiences that I will never comprehend and she will carry a personal burden that I have never known. So that is my first problem. I have to try to understand what she is going through and it is something that I have no experience to draw from. My second issue is that of guilt. I imagine any parent has a certain amount of guilt from disciplining their child. I imagine they constantly weigh their actions to find out if they are dealing with behavior appropriately. Am I being to harsh? Was I acting out of anger? Am I being selfish? Sydney, however, has another issue and that, for me, is the real hard one to overcome. It isn't one thing but it is everything that surrounds her treatment. Is she acting out because of the drugs? Is she feeling sick? She has been through a lot, doesn't she have the right to just be a toddler? It is these thoughts that give me real guilt whenever I discipline her and I have to keep my end goal in perspective. But I want to comfort her. I want her to know that she is loved. I want her to know that she is not alone, and yet, here I find myself hiding her blanket because she threw it out of the crib because she was mad. Doesn't she feel alone? Doesn't she feel ostracized? Shouldn't I just hug her and tell her it will be all okay? Shouldn't I tell her that I am by her side and that we will work it out? Yet, on the other side of the coin, if I don't let her work through her anger alone, will she develop the skills she so desperately needs? Will she become dependant upon others for her happiness? You see, it is a fine line. There is know obvious answer. Don't get me wrong. I of all people love a challenge. I just wish I was more prepared with the skills to deal with it. I wish I had the experience to draw upon. I know we are lucky and I am so thankful that this is the issue that I am grappling with today. I know of many others who are not so lucky but it does not change the fact that regardless of this hurdle in Sydney's life the end goal is that she is happy. The goal for me is not that she finishes treatment in four months. That is just one aspect. We are molding a person. Her success of this treatment not only depends upon the fact that she is cancer free but that she gets through the mental hurdles as well and unfortunately there are no scans to tell us where we stand. So Sydney, I don't have the answers. I am doing my best. I can't wait until you are eighteen and finally get to read this. Boy will we have some talking to do. This really is the molding of who you are in the future. I sure hope you are happy with who you are. I am going to continue to refine my recipe. I love you. And with that I am off to another day of purposeful cooking.

7:26 AM 4/21/2004

Wow, another totally unexciting day. It was so completely unremarkable I even overslept. Sydney only had one episode of breakthrough pain which was easily remedied with a hit of the happy button. We had increased her continuous infusion of the pain medication a little bit in an effort to prevent some of the pain and it worked. Not only was Sydney without pain but she was downright cheerful. Well, not during the infusion, but after it she sure was. She spent the evening playing in the playroom, painting works of art, and chowing down on just about everything left in the hospital kitchen. By about 8PM she was completely worn out which was the perfect precursor for a comfortable night of rest - for all.

Yesterday, I also had the privilege of meeting a new family who was new to the world of neuroblastoma. They are still muddling through the battles of the first rounds of chemo, adjusting to a new "normal", and searching for a somewhat level spot on the neuroblastoma roller coaster ride. The patient is a strapping young man, a young track star in the making who is starting to approach his teenage years. I am always completely amazed by these kids. I can remember back to before our lives were touched by cancer. I hate to admit the way I viewed the world, but I always thought that these kiddos that were getting cancer were somehow different. They could not have been normal. They must have been sickly children. I know it sounds awful but I just never really thought about it. But even though I completely realize how naive I was I am still taken back by these children -physically, mentally, and emotionally. It once again sets in how completely normal and healthy these kids are and I am at a loss for understanding why they have been chosen for this path. It becomes crystal clear that life simply is not fair and our new neuroblastoma "warrior" is a shining example. This kid is a track star. Not a little track star but a big one. An energetic, athletic, well spoken boy on his path to being a man. I talked to this family for about half an hour as they were packing up to go home for the first time after their initial stay after diagnosis. It is both really easy and incredibly difficult to try and talk them through this process. Their is so much that is the same with these kids and yet, with neuroblastoma, their is so much that is completely different. So, I try and stay with the rules that were passed down to me. Hope is the big factor. These families just went from having a child who was going to live the rest of their life to one that has a 25% of survival for five years. You need to know that they will survive. You need to know that people are beating this bastard everyday. Second, you need to know that life will not be like that first stay in the hospital. Parents and children really grieve during this period as they have experienced the death of the life that they had known. Normal no longer exists and their is no getting it back. It is one of the harder hurdles for many to overcome. The only thing that really works is knowing that a new normal will rise to the surface. It will not be the same and it will not be easy but it is a good life and, speaking from experience, a happy one. They need to know that their new normal will not be that feeling that they are experiencing in that first few weeks and months. There are no promises and their are no guarantees but they will make it through. I welcome a new family to our very strange world and pray and hope for our newest star.

This morning we are preparing for our 3rd of four rounds of antibodies and the start time is drawing near. It is time to dawn my cape and focus on my purpose.

4/22/2004 6:40 AM

Sydney had another spectacular day of antibody treatment and we have arrived at our final day of this round. Based upon her performance during the last few days it is quite possible that we could leave for the comfortable confines of our home this evening. We are crossing our fingers. There is not much time this morning as the weebles are already wobbling but I will update as I can. My purpii are up early this morning.


4/23/2004 6:00 AM

We are home!!! This round of antibody therapy was so much better than the last. Of course, it was also the easier round. Next time we go back Sydney will be receiving IL-2 in combination with the antibodies again and we are not very excited about that, especially with how smoothly this round went. Regardless, we are extremely happy to be blessed with such a smooth and uneventful round of therapy. Sydney will still receive her morning shots of GM-CSF for the next week and on Monday she will once again start her oral chemotherapy. Regardless, I sometimes have to sit back and think of how lucky we are and I never forget to appreciate where we stand today. I think part of my reflection has been due to many of the families I have met through the past couple of hospital stays. I spent quite a lot of time with another family who was new to the world of neuroblastoma. It brought back a tremendous amount of memories from Sydney's journey. We get so used to this lifestyle and quickly forget what it was like. I forget how scared I was. I forget the fear and how many unknowns there were. And, most of all, I forget the tremendous sense of loss. I think much of the difference is education about the disease and experience with it. I think that is the reason that it gets easier and, for better or worse, you get used to it. When thinking about it there really isn't a lot that is different as far as Sydney's treatment is concerned. She is still at high risk. She is still receiving treatment that is hard on her little body. But now, we are used to it. We all are. To a certain extent, we know exactly what to expect and we know what to do. There are not nearly as many surprises and that is the big difference. I never thought I would say it but I am somewhat comfortable in this world. I still don't like the fact that Sydney has cancer but I can say our lives are good. We are busy but ultimately - happy. There is light at the end of the tunnel and I learn more from my purpose everyday.


5:15 AM 4/26/2004

Well, what can I say, it is Lynley and my seven year anniversary. I don't know how she particularly feels about it as she keeps watching me very closely to see if I am scratching. But, in all do honesty, I could not be happier with our marriage. It has been seven years since we embarked on our lives together and almost 15 since we met. Our marriage was never something that I had planned on. It was not part of my plan for success. In fact, it was the exact opposite. Truth be known, according to plan, I should not have gotten married until I was 34 and the goal was to marry someone in their late twenties. By that time I was to be millionaire, with a nice house and a nicer vacation house. I was to be a jet-setter, flying around the world closing business deals and vacationing with the rich and famous. Had I never met Lynley, I am sure it would have all been a reality. Boy, am I glad I met her because that would have truly been a stressful lifestyle. Life never necessarily works out as planned but I sure am comfortable in my shoes. Had I not met her I would not be the man I am today. I do not know if I would have even liked him. But, I do like who I am today and much of it is thanks to her. Ultimately, I am comfortable, secure, and happy with where I am in life and that is to Lynley's credit. I am such a lucky, lucky man. As I sit back and reflect on who or what I could have been I get happier by the moment. In fact, if I made a list of all the things I could have accomplished in life with out Lynley I am sure it would be much shorter than the list of all of the things I have accomplished in life with her and that would not even include the small intangibles like true happiness, everlasting peace, and the gifts of Sydney and Graham. One of the most remarkable things to me about our lives together is our team work. Lynley and I, alone, separated from each other, are not much. (Well, maybe she is?) But it is the combination which makes us strong. We both have our weaknesses. We both have elements about ourselves which could be far stronger. But, it is our union, our combination together, which truly makes us something to be reckoned with. We have had a long roller coaster with both pain and happiness. We have hard hurdles in our race for happiness and we will continue to for many years to come. But we are together. Together we can accomplish anything and together we will make it through. She is my rock and yet a warm soft place to take shelter. Yes, I am a lucky, lucky man and glad to be the one chosen to be by her side - just don't let her know. I think I might ask her about buying a shiny red sports convertible and get my hair dyed just to keep her in check. After all she is my purpose too.

Sydney continues to do well. Last weekend was very good to her. She has continued to receive treatment at home. Each morning she is receiving her GM-CSF shots to boost her immune system and to help the little antibodies defeat this disease. Luckily, we have not seen the fevers that we had prior to her last hospitalization. This morning she will begin her oral chemotherapy again which we are none to happy about. Like always, it seems like the moment we get her back to being the happy loving child that we know we have to get her back on Accutane - the anti-Sydney drug or the "Cybil upper." Sydney will also have a clinic visit this afternoon. We are expecting a smooth visit without any complications. The redness has finally left the area around her central line and she appears to be in good working order. She is starting to lose weight again but we are hoping to find out that it is just a minor loss and not as much as we "think" it is. Well, the turkeys have arisen and it is time to care for my purpii - all three of them!!!

6:40 AM 4/27/2004

The clinic visit was a success. Sydney's medical condition is -- Bullet Proof -- with a white count over 30,000. Yes, normal is between about 5,500 and 10,000. The GM-CSF has been working and that means it is time to give her some more chemo. As predicted, we will begin another glorious round of Accutane this morning. Surprisingly, Sydney's weight has also maintained rather well. She is currently 11.7 kg which is a little low for her age but great for her. Her superior condition will keep us out of the clinic until we enter the hospital in just under two weeks. We even got the privilege of meeting with Dr. Eames, yesterday. It isn't that I don't love the other doctors it is just that she holds a special place in our hearts. It is always nice and comforting to see her. One of the topics of debate was our next round of scans. Although we hate scan week it is nice to get the reassurance that things are going as planned and that the monster is not lurking anywhere. We will be receiving our next scans following Sydney's fourth round of antibodies. That makes them about three weeks away. I think the fear that this monster will return will be our next hurdle to overcome. As we get closer to the end of treatment, we are thankful for Sydney's success with treatment but become uncomfortable with the fact that we will not be doing anything. I imagine it will be tough to say that treatment is over and even tougher to go on without the comfort of the hospital or the reassurance of actively fighting the beast.

Mentally, Sydney is doing really well. It completely amazes me. She has spent one third of her life in active treatment. She has received just about every type of cancer treatment available and received most of them in high doses and, yet, she continues to be a happy well-adjusted little girl. Yes, I know, but Mark, you are starting Accutane today, the anti-Sydney drug. And that is the point. Even though she is receiving a mind altering drug which is known to create strong feelings of depression and unhappiness, she always snaps back. It is a testament to her fortitude, her resilience, and her zest and love for life. It is awe inspiring. I mean really, think about it, she is two years old. She has been poked, prodded, made sick, made nauseous, made to be in pain, made bald, been bruised and medically abused, sent to the edge of death and brought back, and still she is happy and abnormal in the most normal of ways. In a way, I hope that she remembers all that she has been through. I hope she realizes that by conquering and enduring this monster that everything else in life will be small potatoes. I want her to realize for the rest of her life that she can accomplish anything that she sets her mind to. I want it to instill the confidence in her that she has in me. They always say that we see the strength of one's character in times of great difficulty and turmoil and Sydney is a great example. Mark my words, Sydney will do great things, heck, she already has. If she got through this she will get through anything. I hope when I grow up I can be as strong as she is. Until then, I will have to sit back and just focus on my purpose. There is a lot of learning to be done.


6:40 AM 4/28/2004

There really isn't a tremendous amount to be said this morning. We are back to irritating our neighbors twice a day. Sydney absolutely loves our "chew-chew" dance and has started this round of oral chemotherapy by asking for the pills. Yes, it is a far cry from the first round when we battled nausea and rage at the mere site of them. I could complain that it still takes a tremendous amount of energy to hoist her on my shoulders and do a ten minute overly-animated "cha-cha" dance around the pool in our back yard. I could complain that is difficult to find new lyrics to the "chew-chew" song and say them with pure enthusiasm.. I could say that it is difficult to keep up that level of energy and excitement as we do the same song and the same dance around the pool twice a day. I could be embarrassed at the site of our neighbors peering over the fence to see what the idiots next door are doing. But, to be honest, I really don't care. Sydney is so completely happy, so entirely excited, it just creates food for the soul. It hasn't gotten old for me and, at this point, I am happy that it has not diminished in her eyes either. It is family time and, although a little odd, it is what we do. Had Sydney never had cancer I never would have experienced it. It still doesn't make it worth while and I still wish the bastard never dawned our doorstep but I am thankful for the extra gifts it has brought along. Who would've known? My purpii are sneaky that way.


5:30 AM 4/29/2004

I get pretty used to sitting back and reflecting. My problem is that I do not want to forget all that I have learned over the past ten months. I think it is a protection mechanism. There has to be some reasoning in all of this. There must be some greater good out of all of the bad. Maybe this is normal thought or maybe it is not but, it is one of the things that I cling on to. Down deep in my soul I guess I (unrealistically) have to place the blame of Sydney getting neuroblastoma on something. It has to have a reason. It couldn't possibly just happen without one. Yes, I know, this does not seem based in sanity. It is not that I think Sydney got neuroblastoma because I am a bad guy. It is not due to something that Lynley and I are or did. I got that, but I still have these feelings that I can cure her, I can keep it away if I am an extra good human being. Doesn't that sound strange? Here I am, a rather intelligent guy, with my feet firmly based in the real world who understands that Sydney's cancer is not punishment from God, yet, I hold my self and my actions responsible for her recovery and cure. As if my "good behavior" will make the difference when my "bad behavior" did not. I hate it when I can logically understand something yet my mind won't accept it. I really do not know whether other parents touched by childhood cancer feel this way, but it is one of the effects that I have experienced. I think we all try to make sense of this crazy world and this just happens to be what I came up with. I think it is partially due to the "deals" that I made with God right after Sydney was diagnosed. I said I would do "this", I would give up "that", I would never do "something" again and I would do it all if he would spare Sydney. As I reread those words, I sound like the sick drunk kneeling with his face over the toilet bowl swearing that he will never take another drink of alcohol again. I guess the difference is that I have stuck to me words. I have lived up to all of my promises and that gives me a sense of pride. I feel like I can trust myself. It is part of maturity and I don't know whether at 33 years of age I should have already reached this point but this experience has made me comfortable in my skin. I understand myself better than at anytime in history and it feels good. It is difficult to explain but I always expected more of myself, and now, I have a better grasp of who I am. The only problem is continuing to meet all of my goals. Due to my "deals" with myself and my "God" I have created a burdensome list of things for Mark to accomplish. It isn't that I don't want to do them it is that there are not enough hours in the day. Between work, family life, raising two terrific kids, "honey dues", and life, in general, it becomes harder to accomplish all of the tasks that I have set out for myself. I know it is self implied pressure but it is pressure none the less. So, on one hand, I am happy with all that I have accomplished, happy with the changes I have made in my life, and thankful for the repercussions. But, on the other, I have put increasing pressure on myself to perform and dire consequences if I do not succeed. It is the veritable double-edged sword of life that I am living by. Good or bad, who knows? This philosophy has helped me through the toughest times in my life. It has kept my mind sharp and my purpose focused. The pressure is simply a byproduct of the condition. In the end, I do not know if it is right or wrong. I am certainly not advocating the behavior and I do not know the long term effects, but, it has gotten me by. Nobody ever said life was going to be fair and surely no one said it would be easy. For the time being, I will just keep plugging away. I will keep putting one foot in front of the other. My purpose is an incredible learning experience.


5:30 AM 4/30/2004

Sydney's last day of receiving her GM-CSF shots was last night. She now has a little over a week of Accutane before we reenter the hospital. So, how is she doing? Lynley and I have talked a lot about this. We could not be prouder of our little girl. For all practical purposes she is normal, healthy, and she has adjusted well to her lifestyle. The only lingering side effects that we continue to see are the high pitch hearing loss due to the platinum chemotherapy agents and the "kittyness" that is most assuredly due to intensive treatment that she has received. Yes, Sydney still much of her time as a kitty cat. Not only is she a kitty cat but she has recruited other family members into her kitty world such as Graham (baby brother kitty), Lynley (mommy kitty) and myself (daddy kitty). But, no, it does not stop there. It is safe to say that if Sydney has met you then at some point you have had kitty added on to your name. She also adds kitty to just about every other inanimate object in the house. Food is kitty food. House is kitty house. Heck, even the dogs have become kitties on occasion. It still continues to amaze me to watch her mind work. Even though "kittyness" is a strange and ever present part of her psyche she continues to through us in a loop everyday. She continues to learn and pick up new things that are beyond are comprehension and it is shocking to see how well she has adjusted to life. Ultimately, she is happy which is really all that you could ever want from your child.

We have a tremendous amount to be thankful for and, at times, I am not as good at expressing it as I should be. We continue to receive gifts in the mail and messages and well wishes from around the world on a daily basis. We have Sydney's health. We have Graham who has been one of God's greatest gifts. We have a great support network of family and friends. We have understanding peers, friends, and employers at work. We have dedicated and understanding doctors and nurses. And, we have each other. If I had sat back before having children I may not have been so appreciative of all of these things in life. I surely did not realize their importance. I think part of it is growing up, part of it is surviving cancer, and part of it is the journey, but it appears that true happiness exists in the simplist of things - family and friends. It just really hit me as I sat on the kitchen floor last night with Graham, Lynley, and Sydney. We were not doing anything important. We were playing and talking and, of course, meowing. But, as I sat there I thought, What more do I need? What more do I want out of life? I could not think of anything greater than that moment. We have been truly blessed and we are aware of it. Thank you for your support and kindness. It is amazing what my purpose and her friends have taught me.


8:20 AM 5/3/2004

You would think a technical family such as ours would never run into computer problems. Alas, my internet connection was not available from the house this morning. So, here I sit, in my office, frantically writing so I can get the rest of the days work completed. Last weekend was great although you could not tell by looking at Sydney. Simply put, she looks used and abused. We have loosened the reigns on Sydney a bit. Yes, I know, what bad parents. But she is seemingly so healthy, so full of life we feel it best to let her experience it. With her immune system in overdrive we are giving her opportunities to be a kid. Yeah, novel concept, but Sydney really hasn't had any exposure to toddler stuff. She has spent over one third of her life in treatment which has left her somewhat isolated. We want to give her some normalcy. We want to give her some zest and there is no time like the present, so, Lynley and I have given her freedom to do things that, before this, were completely foreign. It is not that we are letting her go wild - willy nilly. It isn't that we are doing fabulous things. We are just letting her do what normal kids do. Yes, she plays in the dirt. Yes, she runs on pavement. Yes, she gets to go out in public. She gets to play in the park. She gets to go to public events with her boyfriend. Yes Truman, but I am not at the point where I can talk about it yet. But, most importantly, she is being a kid with both its ups and downs. Both of which are wonderful. Sydney is getting used to some of her new freedoms and she is certainly worse for the wear. Her shins are covered in bruises. She has a busted, swollen lip. She has not one but two knots on her noggin. She has scrapes on her elbows, scratches on her face, and even received the first splinter in her foot.. To top all of this off the Accutane has set in and her skin is starting to peel from her chapped lips. The point is that she is happy. She is having fun and she is getting to experience real life for the first time in almost a year. I know it sounds a little overboard. I know it sounds like a call may be warranted to CPS. But, my daughter is living life and the adjustment is bringing another round of true happiness to her face. My purpose is living and I am not inclined to stop it - bruises and all.


4:50 AM 5/4/2004

Nausea started to set in for Sydney yesterday. Luckily, it appears to be related to the action of taking the pills and isolated to those moments. I believe it is a mental thing and I am hurriedly trying to come up with a solution. It is funny how everything changes from one round to the next. It is, as if, the moment you get comfortable with a particular reaction or situation it changes just to keep you on edge. I suppose this has nothing to do with the fact that Sydney has cancer and much more to do with life and I am guessing our lives sure would be boring without it. However, I sure would like to try it sometime. Sydney still loves pill time and I truly believe that she is under my spell that these pills will make her happy. She loves, and I mean loves, taking the pills. It continues to be a fun time for everyone involved. (Wow, I can't believe I just said that) The problem is that although she is a good chewer she is not such a great swallower. She loves to procrastinate and keep the pills in her mouth. This means she gets to continue being the center of attention. She continues to get to do the "chew chew" dance. She continues to get to be outside. All of which she loves. This also means that I have to be creative about finding an ending to the activity. The longer she keeps the pills in her mouth the greater the risk that she will throw up when she finally tries to swallow them. One minute into the swallowing portion of our little "pill party" and we can see the gag reflex in earnest. It then becomes a race of distraction to get her mind on something else. I have even gone as far as telling her she had already swallowed the pills when she hadn't. The gagging immediately stopped and she decided to eat a popsicle which had the side effect of flushing the pill down her throat. The problem is that if she thinks the pills are in her mouth she will not eat anything until they are gone. This is one behavior I would like to curb but for the life of me I have not been able to figure out. It appears that raising Sydney requires both a medical license and psychologist's license. I haven't really decided what I will try this morning. Many of my ideas come at the last minute because I never know, from one minute to the next, what will intrigue her. Regardless, I know we will figure something out. Hmmm. Right now, that is our biggest stress. This week is a little odd. We have no doctor's visits. We have no clinic visits. No shots to give. No labs to draw. What an eerie strange world this is. But, as part and parcel to this strange world, I expect to get used to it, comfortable if you will, by this Sunday afternoon. Oh, by the way, we go back into the hospital on Monday for our next stint of IL-2 and monoclonal antibodies. I guess I will have to get used to something new again. Oh well, I have my purpii beside me. Bring it on. Change is good right?


5:40AM 5/5/2004

Well, we made it through another day of pill swallowing. Yesterday, Lynley and I switched it up a little. She became the engine of the "chew-chew" train (my usual job) and I took up the position of the coal car. We danced in the front yard instead of the back which added an entirely new element to our pill swallowing adventure. Yes, we got some strange looks. It was trash day so everyone was out and about lugging their trash carts to the curb. I honestly had to laugh as I thought about what must have been going through their heads. There go those strange Dungans again. Here it is, 7:00 AM in the morning, and they are out yelling, singing, and dancing in the front yard like idiots. I have to wonder what I would think if I saw another family doing the same thing. I guess the important part is that it worked and, sure enough, within five minutes the pills were gone. The afternoon pill taking session went just as successfully but instead of the front yard, it occurred in the back. The reward was a slow cruise around the yard with Uncle Jay on his four wheeler. All in all, it was a tremendously successful day.

Sydney's skin has started to deteriorate in full force. Her eyebrows are peeling, her nose is peeling, her scalp is peeling. Okay, enough! Let's put it this way, pretty much, her entire head is peeling. The really strange thing, however, is her lips. Her lips are hot pink and, when caught in the light, they glow. It looks like she is wearing high-gloss, sparkly-bright, pink lipstick. This combined with her already battered and bruised little body creates quite an overall effect. Which, once again, makes me reflect on what my neighbors must be thinking about our strange little family out in the front yard. I know I have talked about it several times already and it is not that I truly am concerned about what they are thinking. It just hits me as completely funny. That is another lesson that I continue to learn on this journey. You have to keep laughing. It cures as it heals. There is enough in this world to be sad about. Heck, enough has happened over the last year to be sad about for the rest of our lives. It has to be balanced by good and happiness. We have to take advantage of the good times because they are that much sweeter. So, until the next time, my purpii and I will just keep laughing.


5:30 AM 5/6/2004

Last night was normal and I don't mean normal in the sense of "I have a child with cancer normal" but rather "just average human being normal." I don't know why it hit me yesterday but it did, like a ton of bricks. The family was all in the back yard. Some were working, some were playing, and I was relaxing in the hammock with a beer. Yes, midweek, after work and I was indulging in the fruit of the barley plant. Perhaps that is why I had such a sunny disposition. Regardless, as I sat there I was amazed at what I saw. Graham was resting peacefully in his carrier on the porch. Sydney was playing with some balls in the pool water and dangling her toesies in the almost frigid, but clean pool. Lynley was scraping the pool with a wire brush and Uncle Jay was just standing there providing us with his usually entertaining banter. As I looked around, I felt a sense of peace. I felt completely normal. There was no fear of cancer, no worries of treatments to come, no frantic business to prepare for dressing changes, IV nutrition, dreaded shots, or anything of the like. We were just a family spending time together. Honestly, it took me quite by surprise and I thought to myself, "What is the difference?", "What is any different about this moment - with and without the cancer card?" For the first time since this whole mess began, I could not define one. At that second in time I had no fear for Sydney. Call it naive, call it unreal, but I did not have the fear that neuroblastoma could win the battle. I never thought I would have a moment in my life where we did not carry that burden. I never thought I would spend another minute in my life without fear of that monster. It was, indeed, a nice surprise. It proves to me that this journey does get better and it is also nice to know that it is not only survivable, but livable - happily livable. I don't know how long this feeling will last. It could be hours or days but it is a nice derivation from what has become the norm. The future will bring us lots of reality checks. Sydney still has treatments to endure, scans to face, life to live, and many of the effects of the last year of treatment are yet to be realized. There is a long journey ahead but it is so refreshing to know that it (or at least parts of it) could be without fear. So, why do I have no fear or burden? Is my mental state firmly based in reality? Was the beer playing with my senses? Probably, it was a little bit of both mixed with a strong dose of hope. Perhaps, I am getting used to Sydney beating this monster. But, I believe in the bottom of my heart that we have won and I think you have to - regardless of what the statistics say. This far along in the road you have to believe you have won or you will spend the rest of your life - well - unhappy, fearful, and a bunch of other negative burdens. There has to be a point where we move on. Doesn't there? Is this it? Many of the other families that have made it to this point and then lost the war (and there have been many) may disagree with me. Maybe, I am wrong. But at some point we have to live again and I just assume it be sooner than later. Life just seems to be too good. I will be frantically knocking on wood with my purpose (who lives on, with or without my fears).


5:40 AM 5/7/2004

Wasn't it just yesterday that I was saying how normal life was? And then, when I woke up this morning, I realized that we go back into the hospital early Monday morning. These hospital stays have developed a quiet way of sneaking up on me. Next week Sydney will be receiving a 96 hour continuous infusion of IL-2. The theory behind this round of therapy is to boost her immune system to help the antibodies attack any hidden, lurking neuroblastoma that may or may not exist in Sydney's little body. The week following this will combine both the IL-2 infusion with the administration of the antibodies. This is the dangerous round of therapy. This is the one that I don't like but I am happy to get through it because it will be the last time that we have this particular combination of drugs. I am not nearly as nervous as I was preceding the last round of treatment that included this drug cocktail. We know a lot more about how Sydney tolerates the drugs and it is also less likely that she would develop some of the horrible reactions that are possible. Regardless, we will be hoping and praying for the best. Next week will be the easier of the two for Sydney. We can expect some mild fever, some blood pressure issues, some rashes, and possible some nausea but that should, hopefully, be the extent of her discomfort during the four days of treatment. It will be the following week which will be far more difficult for her. The next time I write, it will be from the confines of Cook's Medical Center.

Another sneaky occasion is Mother's Day. I would love to say that I have been planning frantically and that I am totally prepared. But, alas, I am not. I am a little mad at myself. Lynley has been such an incredible trooper through all of this. She has not only been a great mother to Sydney over the last year but she has brought us another gift into the world with Graham. Not only does she keep this family moving forward but, she continues to work, she continues to clean, she continues to cook and she continues to work through all of the minutia of our daily lives. Most importantly she continues to be a great person. She has been sturdy like a rock. She has been loving and caring and she is always by our sides. She has been a strong backbone to our family and soft shoulder to cry on. This year has been about everyone else but her yet she has been the one person that has always been the one to provide a solid foundation for us to walk on as we muddle through our journey. What kind of gift do you get that says all that? I don't think there is one. I am completely amazed by her, inspired if you will. I think to understand my sense of awe you have to understand Lynley both before and after. She was always a good wife and a great mother. She had a tendency to be a little self-centered and before cancer when the chips were down Lynley was out. I know, it sounds mean, but it is true. We all have our weaknesses - those just happened to be hers (Mine are far more complex and there are far too many to go through in this venue). The important part is that it has all changed. I can no longer use those descriptions of Lynley in the same paragraph of who she is today. Hence...

Lynley is strong - strong like bull. She faces every challenge head on. She inspires me to be stronger. Now, we can accomplish anything in the world because we know we have her strength beside us. There is no doubting her ability to move mountains. It isn't that she is in the forefront leading the way but she is the one that does all of the work to get us where we are going. I explain it this way. If Sydney was a rock star at a concert then I would be the MC to introduce her on stage and Graham would be the surprise guest star. You would not see Lynley but she would have been the one that booked the venue, sold the tickets, built the stage, decorated the arena, and made sure I had a beer, Sydney had a sippy cup full of warm milk, and Graham had a fresh bottle after we were finished. That is just who she is. She is selfless. I know that is a strong statement to make, but she is in my eyes. While I sit and type in my diary about how hard my life is, she is the one that is in the background dredging through it. I whine about change, about gathering the strength to continue to put one foot in front of the other, and she is the one that just does it. That is strength. That is love for her family. That is who Lynley is. When the chips were down this time she fought back and she has lead us back on the path to happiness. That is Lynley and I just don't think I will be able to find a gift that says that. In fact, I am having trouble just coming up with the words. There is a lot of planning to. My purpii have a purpose and so do I.


6:00AM 5/11/2004

We have arrived for another round at glorious Cook's. Sydney has just completed her first day of IL-2 and appears to be no worse for the wear. In fact, I can say that during the first day she has completely exhausted us. She has been talkative, playful, and downright busy. I know this sounds awful but sometimes while we are at the hospital we think it is harder to care for her while she is healthy. She is so energetic and the stress level rises as we try to keep an overly exuberant little girl from pulling out her noodles. Let me draw you a picture. Sydney has a purple gown on, a hospital gown, the type that allows her little diapered tushy to hang out the back. She has one (or two at any given moment) plastic tubes (noodles) that extend from her chest, out the bottom of her gown. The noodles come back up to the midsection of her back where they are taped to her gown, The noodles then extend roughly four feet to her medicine pole where they are connected to several pumps, infusers, and finally terminated into the medicine bag that is hanging from the top of the pole. It is my job, as Super Dad (or Sydney's pole driver) to follow her around and make sure that she stays close enough to the pole not to put any tension on the noodles which would most assuredly rip them from her chest. What you have to realize is that she is an ornery little twerp and will run down the halls, hide behind furniture, and do just about anything that she can think of to make it difficult for us to follow her with her medicine pole. It is funny at first but after several hours of playing cat and mouse it can really grate on you. "Sydney, stop, no, turn around, go the other way, get out from under the table, no your tangled, go the other way, don't play with that, stop it, Sydney get out from under the curtains, no the other way" That verbal rendition seems to play itself over and over by the minute. It does not take long to realize, however, how lucky we are and once we get the opportunity to take a break we, once again, know full well that it could be much worse. It is funny how I get wrapped up in my world. Here I am, a grown man, calm and collected, yet my mental state can be challenged by a little two year old. It is a tremendous learning experience in self control. I get so wrapped up in my difficulties when chasing Sydney around that, for moments, I loose clarity of the larger picture. Don't get me wrong. I was not outwardly angry or upset. In fact, I was fairly cheerful chasing Sydney around. But inside, I could sense the annoyance and I could hear myself thinking - "Boy, it is a lot harder to care for her when she is not sick." What??? That has to be the most "stupid" thought that has ever crossed my mind. Here, I am, getting to take the day off of work (sorry Monty, Chance, Scott, Jay and all of my other work compadres) to spend time with my daughter and son. Both of whom are happy and healthy and I am complaining because it is hard to keep up with my two year old in the hospital because she is too healthy. What utter nonsense but what great material to learn from. Once I realize that kernel of knowledge my whole mental state changes. I am somehow thankful for my position and the stars become realigned in my universe. It seems to be a recurring theme in my diary entries. I keep relearning the simple fact that I am somehow blessed. I truly get to see, everyday, how lucky I am. I get to be snapped back into reality. Had Sydney never gotten sick I probably never would have truly realized it. My purpii are amazing that way.


6:20 AM 5/12/2004

Another day has arrived at our lovely vacation spot here at Cook's. Sydney continues to do well. Yesterday, she slowed down a bit. It is clear that the IL-2 is starting to do its job. We are starting to see some whacky things on her blood panels but they are all "as expected." Her albumin has once again fallen to low levels and we will not expect to see them on the rise until this course of IL-2 has completed. I now look at many of these side effects in a positive light. Perhaps, it is because I understand them more but it is also because my perspective has changed. Take albumin for example. I liken it to this scenario. Suppose Sydney fell and cut her knee. An effect of that action would be that her knee would bleed. That is an expected side effect of cutting her knee. In fact, I think I would be worried if I did not see her knee bleed. Albumin is much the same way and without getting into the medical details lets just say that one of the side effects of receiving IL-2 is that her albumin will drop off temporarily - just like her knee would bleed temporarily. Now, we watch it just as we would if she skinned her knee. We look to make sure that the bleeding is appropriate for the size of the wound. We look to make sure that the bleeding stops. What we are looking for is to see if there are any other contributing factors or anything else that could make it worse. That is all that we are doing in watching her albumin and several of the electrolytes. We are watching for them to get "whacky" and then we are watching to make sure they are appropriately "wacky". So when I say "as expected" it is this relationship that I am talking about. I really wish I had this perspective early on and I really, really wish I had truly understood what kind of reactions were to be expected from each step in our protocol. Unfortunately, there is just too much information and, I guess, another reason our doctors had to spend years in medical school before they got their degrees. For the time being I am content with my degree given to me by my purpii.


6:20 AM 5/13/2004

It was another rather good day for Sydney. She was playful, demanding, "twerpful," and all of the wonderful things that make her Sydney. Her renal panels continue to be appropriately wacky. Her albumin is low, her chloride is high, and her anion gap is on the low side. Everything else is within the normal ranges. For some reason IL-2 burns albumin and although it is getting close to a place where we might want to treat it, with only one more day of IL-2 this week, I imagine that we will let it slide. It should rebound on its own tomorrow. The chloride and anion gaps are just byproducts of the fact that she is wasting albumin so those of you with medical backgrounds can rest assured that she has not developed multiple myeloma. You see when the anion gap is low, which is rare, it is can be an indication of a secondary cancer, however, in this case it is artificially low due to her serum albumin level. The medical part of this whole ordeal is really intriguing to me this time around and I have finally put together enough resources where I am starting to understand the biochemistry of what is going on. It is comforting to understand many of the things that have been unknowns. The only unexplained new occurrence over the last day has been Sydney's development of a cough. It is something we are watching extremely carefully. A cough can be an occasional immediate side effect of IL-2. That means that it would occur within a couple of days of the drugs administration and that it would occur in anywhere from about 20% to 50% of the kids. We are concerned because it is something new and something that we have never seen before, even during previous administrations of IL-2. Currently, the cough is dry but persistent.

For other reasons, this has been a tough week. I had mentioned a couple of months ago that there was another child that I was praying for because they were pretty sure he had relapsed. Well, I am sad to say that Cryton earned his wings early Monday morning. I have known for some while but I just could not come up with words to express my feelings. I still can't. It was not that long ago that he and Sydney were happily playing together in the playroom. It hits home with me and not because Cryton had neuroblastoma, not because he was diagnosed just a few months before Sydney, and not because I compare he and Sydney. It is because I knew, first hand, this sweet loving child and his family. It just makes no sense. There was nothing wrong with Cryton. He was just your typical little boy. I don't know what makes the difference between one child surviving and another one earning his wings. It certainly isn't the fault of the child or the parents and I am having trouble coming to terms with it. It makes me angry. It is not fair and, for the life of me, I don't think I will ever understand it. I think it hits home because in some way I can put myself in their shoes. I know I can't in reality and that is never something that I would say to another parent who has lost a child but let me put it this way. When Sydney was first diagnosed the possibility of death was so real that I could taste it. It was so close I could feel it and even though I was walking around in a mindless fog it is a feeling that I can still grasp today. I try not to but it is there and whenever I hear of the death of a child I can feel it in the back of my throat and I can see the picture all to clear. I can only imagine that the reality of a child earning his wings is far worse than that memory but that memory is bad enough that the feelings start to well up inside me. I sense some of their pain and it is heart wrenching and soul retching. I feel for Cryton and his family and I know that there is nothing that I can do to bring them comfort or peace. It just makes no sense. My purpose, however, is clear as day.

5:50 AM 5/14/2004

We are nearing the end. At about 9:00 AM this morning Sydney will have completed her 96 hour infusion of IL-2. The possibility of going home this morning is pretty high. For some reason, we saw some recovery in her renal panel rather early. That leaves her cough, snottinosedness, and some mild wheezing as the only things left to recover. Lynley and I are still concerned about the cough but it does not seem to bother Sydney one bit. She has continued to be playful and, most importantly, happy.

Yesterday, Sydney received another hearing test. Unfortunately, both ears are 100% occluded with wax so some of the tests could not be completed. The good news is that she can hear although most noises are probably muffled. This would explain her lack of response in noisy places. We were unable to test hearing in her left ear which is the one that we know has some hearing loss. Her right ear seems to be functioning at normal levels and is sufficient for both speech and normal development. The great news is that we finally got someone to stand up and say that the wax must be removed. We have been trying to get someone to clean out her ears for nearly a year and are hopeful that this will get the job done. Since Sydney is dependant upon her right ear for much of her hearing it is imperative that we keep it clean and healthy. It isn't that anyone has fallen down on the job. I have learned much over the last year about how medicine works with the "help" of insurance companies and it is tasks like this that seem to get left by the wayside. Okay, up on my soapbox. My doctors are great, my nurses are great, my insurance company is great, and everyone, in between, is great. Given that, the system is broken. It is increasingly difficult to get anything accomplished without fifteen forms being completed in triplicate. Worse yet, every clinic, doctor, insurance company, and hospital has a different way of doing it. More time is spent wrangling through this mess of documentation, verifying the unverifiable, and precertifying the uncertifiable that I am surprised that anyone ever gets anything done - medically. I don't know where the problems begin and where they end but what exists is a mess of paperwork that precludes everyone from getting the job done. Everyone is being squeezed for less dollars and more time and what results in the end is less care for the patients. Hey, it makes sense. The insurance company should make a profit, the hospital should make a profit, and lord knows the doctors and nurses should be paid well - after all they are saving lives and they have dedicated their lives to it and to a certain extent their families. The problem seems to be that every one is getting squeezed. The insurance companies are covering all of these frivolous lawsuits which means they have to increase the amount that they charge for insurance and reduce the amount that they pay out for care. Physicians have to cover higher insurance costs and lower payment for their services so that means they have to see more patients. That means they have less time to focus on each patient. That means more mistakes are made and more frivolous lawsuits are filed which in turn starts the whole chain over again. Unfortunately, in this scenario, everyone seems to be suffering but the attorney's. So, whose fault is it. Well, I think it is everybody's - including the patients. I could honestly talk about this subject for hours with specific examples but this is perhaps not the best time or place. Suffice it to say, the system is broken and everyone seems to suffer from it. Okay, I shall step down again.

Well, I hope to have a nice quiet weekend at home with our purpii. On Monday morning we will be returning for our next round of therapy which includes both IL-2 and the antibody. It will not be a fun week but it will be one that we will be thankful to have behind us. My purpii await.

11:30 AM 5/14/2004

We are home!!! This morning Sydney had a chest x-ray to rule out any hidden lung problems. The results were all clear. Sydney is good to go.


4:00 AM 5/17/2004

Well, I just got off the phone with our exceptional nursing staff at Cook's and they are all ready for our arrival. I usually call 3 north the night before our arrival just to make sure room is available, however, this time I had some ulterior motives. Like I have said before, I do not care for this round of therapy and combined with a sleepless night of worrisome anticipation I just had to call to make sure all of our ducks when in a row. Yes, the nurses are extremely talented and even better to put up with me. This morning will be bustling with activity and this is the calm before the storm. Sydney will be receiving several drugs starting today and the biggest problem is that of drug incompatibility, so, Sydney will need a peripheral IV placed just to have enough spots in which to deliver the medications. Unfortunately enough, the monoclonal antibody, the IL-2 and the Fentanyl have to run separately and that requirement alone has her completely full of noodles. This does not even account for pre-medications and other drugs which will need to be delivered throughout this course of therapy. We will be leaving for the hospital in just over an hour and the goal is to have the therapy started by 9:00 AM. Between now and then there are several hours which will be filled with blood tests, catheter placement, and pre-medication.

What to expect? I have mentioned most of this before but, for Sydney, this will be a difficult week. We can expect fevers which will most likely start tonight and continue to increase over the next four days. This will undoubtedly complicate the situation because she continues to have a cough. For this reason, I imagine that an antibiotic regimen will also be added to the list of meds to be delivered through her noodles. We will also expect whacky electrolytes. For starters her albumin will fall off (yep, another product that will have to be delivered through her noodles) which will require artificial support. I can't remember off of the top of my head what all of the items will be which will get a little crazy but I do know that we can expect to see her potassium, sodium, chloride, and calcium serum levels do some funky things. Rest assured, once I have woken up a little bit, I will be going through my notes so that I have an understanding of exactly what should and should not be happening in regards to her renal panel. We also expect pain, hence the Fentanyl, but we have all become pretty accustomed to this routine. Hopefully, we are getting better at this as parents and "happy button pushers" and can keep her pain managed fairly well. Lord knows we have seen the precursor signs of pain before and have become accustomed to looking for the signs. We can also expect to see some odd rashes and just general irritability. We also have a list of things to watch for. Sydney's biggest threat comes from capillary leak syndrome. This is a direct effect of IL-2 which is only bolstered by the fact that she is receiving the monoclonal antibody which has its own effects on blood pressure. We will watch her very closely to ensure that her blood pressure maintains itself, that she maintains her weight, and, most importantly, that she stays fairly balanced with her Is and Os. Is and Os are Ins and Outs we want to make sure that the amount of liquids and foods that go into her body are close to what she puts out through her urine (and sweat from the fevers). This will show us that her body is tolerating the treatment and that her capillaries are not leaking into her body. The laundry list continues but those are our major threats. Quite frankly, the list of items that could happen are too numerous to list here and I just assume none of them happen to my baby girl. Thank God this is that last extremely difficult round for her. We will have to be diligent and keep an eye on our purpose and our arms wrapped around our baby girl. It is go time.

5:50 AM 5/18/2004

One day down. Sydney had a difficult day. We had some difficulty managing her pain. It was not that it was out of control. We just could not get her comfortable. There is a fine line with Sydney and Fentanyl. We like to keep her just on the edge of comfortability. If we give Sydney too much Fentanyl she breaks out in a rash, she becomes very itchy and irritable. On the other hand, if we do not give her enough the pain quickly consumes her and she becomes a writhing ball of agony. The good news about yesterday is that we never gave her too much. The problem is that we were never totally able to control the pain and there were several occasions where she would cry and writhe in pain. We were able to recover from her episodes of pain rather quickly but it was certainly no fun to watch or for her, I am sure, endure. I have stopped seeing medicine as black and white. You would assume that after all of our experience with these drugs that we would have no problem controlling her pain. You would assume that the treatment of her pain would closely approximate the time before when we had been through this exact treatment. But, that is simply not the case. By the end of yesterday we had used almost double the amount of Fentanyl that we had used in previous treatments and the coverage still was not enough. Needless to say we are hoping that we have better luck today.

Another disturbing occurrence of the day was Sydney's incessant coughing. She spent much of the afternoon coughing uncontrollably. She simply could not stop. We tried a variety of different methods to make her more comfortable but it would not be until we got her fluid overload under control and administered a dose of benadryl before she would be comfortable again. Throughout the day yesterday Sydney gained almost two pounds in fluid. That may not sound like much but when it represents almost 10% of your total body weight it can send up a white flag. Fluid overload is indicative of either capillary leak syndrome or, most likely, a reduction in efficiency of her hepatic system. Both of these conditions can be caused by the treatment and it is just something that we will have to watch closely over the next few days. Sydney also received a blood transfusion and a good dose of albumin, neither of which is surprising. We are hoping that by keeping her counts above certain levels her body will be more capable of dealing with the treatment. As far as her renal panel goes -- appropriately wacky. Her calcium, chloride and albumin have fallen off. All of which is as expected. In fact, I would expect that the next couple of days will bring some further wackiness. I anticipate that her Potassium and sodium levels will also take a dive and it would not surprise me to see her creatinine and some various other electrolytes to hiccup.


5:30 AM 5/19/2004

I guess it is fairly obvious that I never got a chance to finish my entry from yesterday morning. We stayed busy much of the day. Sydney has continued to deteriorate. We have finally struck a mild fever which appears to be par for the course. I am happy to say that pain control was far better yesterday than it was the day before. Sydney was not in need of a single push of the happy button. Everything else appears to have been about the same and , unfortunately, her cough continues. There are brief periods when the cough is nonexistent but for the most part it is a constant occurrence. When she is doing well the coughs seem to come every few minutes, but when it is bad, they seem to come every thirty seconds or so. I am amazed but they do not seem to bother her. I would think that the frequency would be enough to drive anybody insane but she seems to be taking it in stride. She is such a little trooper. We really do not have any solid leads on the cause of her coughing and, therefore, no real cure. It does not seem to be from fluid overload and my best guess is that it is a result of the IL-2. Treatment seems to be the big issue. Sydney's heart rate spent a good deal of time in the 160's yesterday. This was, most likely, due to her fever and the breathing treatments of albuterol. The breathing treatments appear to bring Sydney some temporary comfort but, unfortunately, it also raises her heartbeat so we are limited in our ability to treat her with this methodology. So, that leaves us cough medicines and the like which do not seem to bring her any relief. The cough is strange. Her lungs are clear and she has no other signs of respiratory distress. Her breathing is normal and the oxygen saturation levels in her blood seem to hover at or near 100%. We have considered the possibility that it is an allergy but benadryl does not seem to work every time. It is just one of the many unknowns. I just wish it would stop so that she could rest peacefully.

Two thoughts have consumed much of my waking hours lately. I spend a lot of time talking to other parents who have just entered this journey through Neuroblastoma with their families and I have tried to put my finger on what is different about this part of the journey. There is a substantial departure between this leg of the race and the world as it was when Sydney first got diagnosed. Describing that difference and putting my finger on exactly what is different is quite a different thing. Two things come to mind. They are not guarantees and I think they are different for every family that enters this world but it is hope that things get better. These two items are the loss of fear and quality of life. Fearlessness is hard to explain and it is even harder to explain why, but I really no longer experience fear. For me, that is the biggest departure from the world as it was in the beginning. Part of my lack of fear is because I know a tremendous amount more. Very little is new in our world. I remember late last summer when I cringed at every lab, I held my breath during every transfusion, and I chewed my nails through every round of chemo. Everything set me off and I was in a constant state of worry and anxiety. I would wake up in the middle of the night with my heart racing and I fought to keep my panic attacks in check. My tools to get through those episodes were education and acceptance that there were no guarantees or absolutes. It was this switch in my brain that let the stronger of the two Mark's take over. There is so much more power when you know what to expect and where to go for answers. In the past there was so much that I did not know. If her blood pressure went up or down was it good or bad. Did it mean she was going to live or die? These were constant mental questions that were floating through me head. But now it is much different and I think because of it I am more capable of caring for Sydney, Graham, and Lynley. Right now, I have no fear of losing Sydney. I do know the risks of this particular round of treatment but I also know what to watch out for. I feel strong. In the beginning, I never felt that way. The other item that has kept my fears hidden away is the belief that Sydney has won. I know, unrealistic. But I truly believe in the bottom of my heart that we have beat the monster and I am not going to let him take my strength away. Don't get me wrong, their are still moments when the "what ifs hit my psyche" but they are quickly controlled by my fervent belief in her success. I think this strong belief system was fueled by hope. I hoped so hard and so consistently that my hopes and dreams became the reality that exists in my head. So for me, that is the big difference. For better of for worse, I don't experience fear and when it raises it ugly head it is quickly squelched by education and experience. I don't know if this will help you or not but it is how I feel. The strength that was ripped from my heart and soul in the beginning returned with a vengeance. I am a stronger man today and my family is better off for it.

Unfortunately, there is simply not enough time to cover my quality of life debate here today but I hope the next few days bring enough comfort for Sydney that I will have time to address what I believe to be one of the most important ingredients to life and happiness in this altered world. For now, my purpii await and there is a cough to cure.


6:50 AM 5/20/2004

Sydney continues to be a trooper although Cybil made an entrance in earnest yesterday morning. Her counts continue to be whacky but ,if I remember correctly, they are not nearly as whacky as they were at this point in round two. Her fevers, too, have not been nearly as severe. Her cough, however, remains. Her coughing spells have become rather routine and they seem to be worst between the hours of about 11:00AM and 7:00PM. Thankfully, that means she is receiving a comfortable night of rest. I only heard her coughing spells a few times last night.

We are now on the downward end of this round of therapy. Today she will receive her last round of the monoclonal antibody and with that she will receive the gift of her right hand. Yes, she will be extremely happy to know today that they will remove the peripheral IV out of the back of her hand. Sydney will continue her dose of IL-2 until tomorrow morning at about 9:00AM at which point she will have officially completed this round of therapy.

How is Sydney? Judging by my last diary entry I can tell that I have been tempered by our journey through this world but Sydney really has not. She is still the same little girl that I have always loved and admired. She is strong and courageous and continues to take all of this therapy in stride. Ultimately, I would say she was happy. Yes, some drugs cause mood swings. Yes, sometimes the pain just seems to be too much to handle. But, for the most part she is simply, happy. I think my statement that she takes all of this in stride really is the best description. She just goes. She just endures. And then she moves on. I consider our family and Sydney very lucky. Even after all that she has been through she still continues to love coming to the hospital and she loves going to the clinic. I know that many kids hate this experience. I know, for many, their lives and perceptions of them are forever altered for this experience. For Sydney, however, it is not true and I don't know why. Aaah, my purpose has arisen and her alter ego is demanding a warm milk cup. It is time to get to work. I will have to finish this later.


6:20 AM 5/21/2004

Thursday was a great day. Sydney's cough has continued to subside and, if forced to describe it, the best I could come up with is "sporadic." This round was very different from the previous rounds of therapy. She never really spiked the high fevers and for the most part, except for the cough, it was completely uneventful. Sydney was chipper and playful with the exception of a rather sore tushy. This brings up a great memory for the years to come. Sydney still has the habit of "sniffing" fuzz. Generally speaking, whenever she is stressed or she is experiencing pain she will pull off a piece of fuzz from her blanket and either rub it on her nose or, often times, on the place that is experiencing pain. Often times, when she is in treatment either Lynley or I will stand by her crib and rub a piece of fuzz across her brow or during the antibody treatment across her tummy. Now fuzz is truly amazing stuff and can cure most ills. You might laugh but it is amazing to watch. Sydney can be in intense pain verified by screams, increased heart rate, blood pressure, etc. and a simple rub of the fuzz can send her into a place where she fines both physical and mental comfort. I would even go as far as to say that it is on equal ground with Fentanyl or Morphine in her eyes. You know I hesitated to publish this on the website because now I fear that teenagers will read this and the next thing we know we will have a generation of high school kids getting their highs from sniffing fuzz. Fuzz is just that good of stuff apparently. Now, with that history, I can explain what happened yesterday. Sydney has had a fairly rough bout of diarrhea during this round of treatment. Her little hiney is red and chapped and it has left her in obvious discomfort. Well, yes, yesterday I was asked "Daddy, tushy owies, fuzz hiney." Now being the good father that I am I jumped from my seat and sprung to the crib where I fervently fuzzed her hiney. Every time I would stop she would tell me to continue. I must of stood there for an hour or two rubbing fuzz on Sydney's hiney. The thing that I didn't notice right off was that the curtain was open on our window that faced the hallway. Yes, the one where everyone was walking by and watching me madly fuzz my daughter's hiney. It pretty much became a show as the nurses gathered and passersby giggled at my delivery of an obviously medically necessary procedure for my daughter. The things we will do for our children. I am happy to report that we now have a very happy hiney.

Last night included another notable event. Uncle Jay, Lynley's brother, has become quite a fixture in our lives at the hospital. He comes up to see us every evening to make sure we have everything we need, to pick up dinner, or just to spend time with Sydney. It is like clockwork and every evening he appears. Yesterday Jay took the day off of work to go to the Colonial golf tournament, but like the sands of time, he made sure he was here early in the evening to care for us. Now it was obvious that Jay was "tired" after a busy day out in the sun walking around the golf course. The sun obviously took a toll on him and I am sure (not really) that it wasn't the margaritas that left him in such a dilapidated state. Yet, he was here to care for us. He sat down in my chair. (Yes, it is a recliner and it is mine and since I am not allowed to have one at home I have staked claim to this one!) Within minutes he had fallen into a deep slumber. Honesty, at first, we though it would be good for him to take a little rest so we left him to sleep. As the evening went on however it became necessary for me to wake him up because he was blocking my access to my inflatable bed and, thus, a peaceful night of rest. So, in both of our best interests I decided to move him. Luckily, the recliner had wheels so I was able to simply roll him and my recliner out of the way. He slept right through it. But, you know, now he was in the middle of the room and he was in the spot where I put my inflatable bed each night. Plus, because my mattress has a slow leak I would have to blow in up with my mini air compressor. Yep, he would have to be moved. We are in small cramped quarters here in the hospital and we would have to make room. That is when a light went on inside of my brain. I would need to move him again in order to inflate my bed. Once again, I wheeled him over next to the bathroom sink. Hmmm. He still slumbered. That is when I realized that this simply would not do. He now blocked access to the sink. How was my lovely wife going to get ready for bed? What if we needed to wash our hands before caring for Sydney? It became evident that he would have to be moved again. I figured I could just put him out in the hall. Yes, that was a good idea. That way we could get ready for bed and he could continue to sleep. So open the door I did. I quietly wheeled him out into and down the hallway. After all I did not want him to be in anyone's way. I went back into the room to get ready for bed. Within about ten minutes Jay woke up to applause by the nurses and various others who had gathered around him to make sure he was resting comfortably. For some reason he was not that appreciative of my efforts to preserve his sleep. I think he learned his lesson and I got a comfortable night of rest. We love you Uncle Jay.

Today we will be heading home. Currently she is receiving some potassium bolus to bring it back into normal levels. We still have a few more medications to deliver to Sydney throughout the morning but I am guestimateing that we should be home around noon. Thank you for the prayers and thank God for another successful and quiet round of therapy. My purpose awaits.

HOME, _________ HOME!!!

4:48 AM 5/24/2004

It appears that I had forgotten to mention that we made it home on Friday afternoon. Yes, although Sydney was still retaining fluid, we made the glorious trip home. Before our departure, however, Sydney received a tune-up. She received her monthly prophylactic antibiotic and after checking all of her fluid levels and pressure and filling up where needed Sydney was sent on the trip home. She also received some Lasix, some Potassium, and some Albumin just for good measure. The trip home was fairly uneventful although it sure was nice once we had arrived there. As much as I say it is not that bad to visit the lovely Cook's resort it sure is nice to get back home.

Sydney has had a little difficulty adjusting to her life back home this time. To be honest, both Lynley and I are a little concerned. Sydney has been acting - well - strangely. Something definitely is not right in Sydneyland and we are working to figure it out. The first day home was highlighted by some strange occurrences. First, and foremost, Sydney had not slept well. That, alone and in and of itself is not to shocking. The first few nights home are usually filled with frequent awakenings and cries. We believe she is adjusting to being alone in her bed and her room. But this time it was more than that. She is having either nightmares or psychotic episodes and, to be honest, we really do not know which is which. At night these brief moments give rise to strange conversations and at times - terror. She seems to be recollecting everything that has ever happened to her that was bad. Unfortunately, Sydney has a laundry list of events to relive. During the days she just seems uncomfortable and is having difficulty controlling her anger and her emotions. Yes, I know, it is a lot to expect of an almost three year old, but there is certainly a difference. We have also noticed that she seems to be much better after meals. Perhaps, this is a nutritional issue and we just need to get her back on track. I imagine that the chemicals floating through her body after treatment would make any one uncomfortable in their skin. I guess that the best way to describe her in Sydneyan would be to call her a "mad kitty." The difference is remarkable and almost predictable when watching her behavior. Sweet meows quickly turn to lion roars - literally. I wish I could better describe the sounds but suffice it to say that it sounds like a wild cat. She becomes agitated and it takes a few minutes, at the very least, or 30 minutes at the most to calm her down and get her to recover. Lynley and I are doing as much as we can to help her become comfortable in her world. There are a multitude of things that are probably going on and who could blame her for feeling the way that she does. Could it be the IL-2? Could it be a behavioral issue? Could it be developmental? Or, could it just be that she is tired? Like all things in this world of neuroblastoma we will face them head on and do our best so that our princess comes out happy and well adjusted on the other end. I love you baby girl and we will get through this. We don't have all the answers but Mommy and Daddy are right here by your side.

Today also marks the beginning of scan week. In a few short hours, after we deny her a morning cup of warm milk and breakfast (Good timing, huh?), we will head to Cook's for her scheduled CT scan and bone scan. We imagine that this will be an all day event. Hopefully, after a nice, complete night of rest Sydney will be more comfortable and ready to face another grueling day. This race is not over. My purpose is just getting more pissed off!!


4:30 AM 5/25/2003

Scan day is usually a day you would like to forget about but, somehow, you never do. First off, it is hard on these little kiddos. Not only are the subjected to what would usually be their least favorite thing to do but most times (okay, all times) they are subjected to hours of waiting. Second, the minute after you receive the scans you get to wallow in self doubt until you receive the results. I think I probably create more worry for myself during the hours and days of waiting for results but I simply can't help it. I look at all the technicians who administer the tests. Did they smile? Did they rescan an area of Sydney because the saw a "spot?" Did they avoid us after the scan? "Hmmmm....." What was that? Was that a good hmmm or a bad hmmm? What are they looking at? Yes, it is a nasty web of secrecy. Ever time we have scans I try to avoid doing these things but it always happens. I am always watching, wondering and worrying. Oh sure, I may look calm, cool, and collected (after all, I am super dad and everything) but inside I am about to explode with second guesses. Being a radiologist technician has got to be a difficult job. Not only do you have to be proficient at operating millions of dollars worth of equipment but they also have to be skilled in the artful craft of parental deception. In fact, I think part of the training includes a stint of spy school with 007. I have this mental picture of a torture chamber where they have the technicians sit in a chair where they are tortured to see if they will blab early test results. Only the ones that keep their lips sealed make the grade. They are a tough, well-trained bunch. They can't tell you it is good. They can't tell you it is bad. You just have to wait and waiting for scan results, believe it or not, is the second hardest part of this journey to endure for a parent. We know, all to well, what bad test results mean.

Sydney had a better day. Yes, there were still moments of mad kitty. She is still having difficulty with night terrors and something just isn't right in her world. But, I am proud to say that she was a great little girl yesterday. She stayed still for all of her scans and, get this, she even fell asleep on the bone scan machine during the scan. We spent hours in the playroom upstairs on the third floor where she calmly swallowed her 16 ounces of radiographic contrast. She was a very good little girl. Most importantly, she was happy, and with everything else that has happened, is happening, and will happen that is what brings a smile to my face and warmth to my heart. It is days and times like this when I feel like I am doing my job as a parent.

Thankfully, Dr. Eames understands our propensities for doubt and worry. She called us last night with the results of the CT scan and lab results - All clear!!! We still have to wait for the bone scan which was yet to be evaluated and we still have several more tests this week but so far, so good. My purpose is happy.


5:00 AM 5/26/2004

Our next clinic visit is June 11, 2004. Can you believe that? That just can't be possible. They must be trying to break us very easily into the thought of no treatment. Otherwise, I am sure there is something that could be done. It really is strange how these routines make you more comfortable. You get so used to being coddled in this world. Having doctor's visits twice a week is just one example of these routines. As a parent you never worry too much because a clinic visit is always, at most, a couple of days away. "Sydney has a cough. Well, that is okay because we will be in the clinic tomorrow." or "Sydney is acting lethargic. Well that is okay we will see Dr. Eames in two days." But never, never see you in three weeks. What kind of control freak do they not think I am. I have gotten used to my schedule and I want it back. I want somebody to tell me every other day that Sydney is doing well and it would really help if it was from a certified, professional, expert, neuroblastoma-minded oncologist. This three week visit stuff simply will not do. Wow, glad I got that out of my system. Now, how well do you think I am going to do in three months when we are officially off of treatment and our visits go to every three months. They may think that they can break me in easy now but they have another thing coming.

On a separate note (unrelated to my unnatural need for constant reassurance), Sydney seems to be doing better everyday. We are seeing less and less of mad kitty who is being replaced by my sweet little girl. Her tolerance for what angered her has been sent up the charts and she seems to be coping much better. Yesterday we had her MIBG injection and tomorrow we will be going back for a laundry list of scans and an ear tune up. We have finally (after a year of scheduling and rescheduling) arranged for Sydney's ENT to come and remove her tubes and perform an ear cleaning. This will mark a year that we have not been able to visualize her ear drums because of the wax buildup. We are hoping that this improves her hearing and gets us to the point that we can actually test her ears to find out the extent of loss in her left ear. Thankfully, we should only hear that her hearing is better than we suspected and we shouldn't hear anything about it being worse. That will be a significant change from what we have become accustomed to. Over the last year we have gotten used to hearing that just about everything was worse than expected so this will be a nice change. Here is to hoping that my purpii have a better than expected day.


5:00 AM 5/27/2004

Well, here it is. I used to look at scans with such dread. They are always a pain and there is an inordinate amount of waiting. There was also a high stress level just worrying about getting Sydney comfortable with the process. Alas, much of that has become second hat and, now, I have a need to have scans. It appears to be the only thing in our world that will tell us everything is alright. I have a feeling that I am crossing the bridge unto an entirely new world of neuroblastoma. So far I have discovered two states of existence. There was the "diagnosis" Mark. So far, that was the nastiest state of being that there was. Luckily he was short-lived. Next was "in treatment" Mark. This life is certainly livable although terribly time consuming. I guess you could call it high stress. These two periods on our journey are far different from each other, but the perspective on life, love, and family is much the same. There is much comfort in being "in treatment". I wear it like a banner because we are doing something and it is working. You have the sense of purpose. There is clear direction and to a certain extent less fear of the monster taking your child's life. It is the next stage that concerns me, the "post treatment" Mark. We are no longer doing anything. We are waiting. We are waiting for it never to come back. The only reassurances that we will receive come in the form of quarterly scans to make sure the monster has stayed away. We won't be doing anything. We won't be treating. We won't be winning. Just waiting and waiting and waiting. We will be waiting for our next scans and the reassurance that everything is okay until the following week when we will be wondering again. For me this will be more difficult than the "in treatment" phase. I am a doer. I am able to keep my worries in check by doing something about my problems and the future leaves me no tools to deal with my worries. I know it sounds strange but that is the reality of the situation. I am going to have to find a new way to deal with my worry. I will need a new tool, a new life lesson to win the next leg of the race. Regardless, I really look forward to my scans and hours of waiting because we are doing something. We are checking to make sure everything is okay. Here is to a day of waiting and clean scans for my purpose.


4:40 AM 5/28/2004

Okay, now we wait... Sydney was a stellar little good girl yesterday. She has completely recovered from the "mad kitty" stage. The difference is astounding. As a parent you are always trying to learn what you can do better to curb bad behavior. It is our job to give our children the tools to deal with life and the hurdles it throws at us. Four days ago Sydney had no coping skills. She was rude, combative, and just, through and through, mean. At that point in time Lynley and I were scratching our heads trying to figure out what to do. Was it the treatment? Was it her lifestyle? Was it a reaction to the drug? Was she just a bad girl because we have been too lax? A million things went through my head but I had to do something to fix it. She had completely lost her ability to cope with life, with her family, and with herself. She would burst into tears and anger at the smallest of occurrences and if you looked at her the wrong way you were due for a backlash of pure evil. Her recovery from these episodes was also lackluster and many times one rage ran into another. In retrospect, Lynley and I didn't really change our approach to caring for Sydney. We were consistent, we were firm, and we were loving but nothing was really different than the days before. Something just snapped in Sydney's brain over the past few days and for the most part she shows absolutely no signs of who she was in the days following the last round of treatment. She is loving caring, sweet, funny, twerpful and all of the things that make her so entirely special. She recovers from normal 2 year old outbursts quickly and for all practical purposes I could envision her as the poster child for good behavior. So what happened? What was the difference? What can we learn from this experienc?. What happened in the first place? It obviously wasn't my super-human super-dad child-rearing powers. The fact is that we just don't know but we are so incredibly happy to have our Sydney back. For the time being, I am going to blame it on treatment and IL-2, but I doubt that we will ever no for sure. I am just so relieved to have my Sydney back.

Yesterday was full of laughter. As mentioned before Sydney had a laundry list of "upkeep" and testing to accomplish. The first task came in the form of a sedated ear cleaning and tube removal performed by Dr. Lowrey. He is Sydney's ENT. I have no interest in capturing the full description of what he found in Sydney ears for all eternity here in my diary but lets just say it was shocking. After completing his procedure he brought us out a napkin filled with two small ear tubes and two balls of wax that each exceeded the width and girth of a jelly bean. Although this would not explain her high pitch hearing loss it will certainly improve her hearing. The next procedure on the docket was performed by Dr. Howrey (Dr. Handsome for many) one of Sydney's oncologists. He quickly obtained two bone aspirates from Sydney's hips. I have described this procedure before but it is safe to say that it has become rather routine and the procedure itself on Sydney was uneventful. The funny thing about the ordeal was all of the scheduling involved with two doctors whose names so closely resembled each other. It seemed like every time we talked to the nurses, doctors, receptionists and technicians about these two doctors the question was always "Dr. Who, Lowrey or Howrey. It concerned us a little so we though it appropriate to label her ears "Dr. L" and her tushy "Dr. H." We wanted to avoid any more confusion and we certainly didn't want her bone aspirates pulled from her ears or wax removed from her tushy. The introduction of these two doctors was also quite funny. Dr. Lowrey explained that his family name used to be Howrey until they had a cousin with a severe lisp and, thus, the name became Lowrey. He went on to explain that it was their experience that the Lowrey side of the family was far more intelligent and good looking than the Howrey side. A good laugh was enjoyed by all.

Sydney's MIBG scan followed and it too, was, uneventful. Or, so we think. Once again we sit and wait to hear the golden words that it is "all clear." It could be today but I am not inclined to get my hopes up. I imagine that we will have a holiday weekend with this in the back of our minds. Then again, it could be far worse. I am very lucky and extremely happy to have my Sydney back. I will enjoy the weekend with my purpii regardless.


4:47 AM 6/1/2004

Bruises all over the body. Pain and stiffness down to the bone. Cuts and scrapes all over the body. Yes, it is tough being the father of an almost three year old little girl and an over three month old boy. It was the grand parents idea. Hey, how about we pitch in and get the kids a play set. Better yet, lets get a monstrosity of a clubhouse/slash swing set that you have to build. Even better yet, let's have Mark build it. At some point, I should have thought things through. I should have said no. I should have said absolutely not. But being the "Super Dad" that I am I thought it would be a bunch of fun for the kids. So, on Saturday morning we set out. Within an hour we had two truck loads of lumber, a slide, four swings, some climbing rocks, and the ever important "kit" ( I shall get back to this later.) It should not be that difficult. It should take two people 16 hours each to put it together. It was all planned out. I had a cut sheet with all of the lumber dimensions. I had diagrams. I even had Uncle Cameron and Uncle Jay to help out. So, I grabbed my trusty screw gun, my 10" miter saw, and a plethora of manly woodworking tools and headed out to the back forty.

It took a while to get started. There were over 150 pieces of wood to be cut. Not to worry, though. I am "Super Dad." After all, how hard could this be. I had built my own cabinets for our kitchen. I had remodeled two houses. This was child's play. This was simple rough cut lumber. So, off I went. Hold on, rules. Every one needs rules. First rule when dealing with Lowe's Clubhouse/Swing Set kit - there are two sets of instructions in the box. One set is to build the clubhouse pictured on the front of the box and one set is to build something else. Make sure you select the correct instructions before you cut all of the wood (Not that I did that -- Okay, I did!) or you will end up with a bunch of miss cut wood. Not a problem, though. I caught myself midway through and was able to recalculate the yield on the lumber so that I was able to get all of the pieces that I needed. Second rule, when building the Lowe's Clubhouse/Swing Set kit. After you have cut all of the wood, followed all of the instructions to the tee, and constructed both the first and second story of this monstrosity of a playhouse, do NOT be upset that you have to take it a part and reconstruct it again because of a mistake in the instructions. Yes, for those of you in self abuse/self playhouse construction land, the Lowe's Clubhouse / Swing Set kit includes a misprint on page 1. The second story is to be 59" from the bottom of the foundation, not the top of the foundation as it clearly illustrates. Not a problem though. At this point I was working by myself (I was uncleless so to speak) I would simply take it down and put humpty stupid damn clubhouse dumpty back together again.

After my deconstruction and reconstruction which really happened rather quickly (2 or 3 hours) I noticed I was still uncleless so I decided to start building the roof rafters on the ground. After that, I was still uncleless and the roof needed to be hoisted onto the house. (By the way this is not wise to do yourself but I was under a timeline) So up it went. With the help of some 2 x 4s (my replacement uncles) I was able to hoist the roof up. The remainder of the weekend and the holiday, the two uncles (the 2x4 ones) enjoyed our companionship and teamwork and completed the clubhouse. Yes, we are worn. Uncle Jay 2x4 has some splinters and is definitely worse for wear and Uncle Cameron 2x4 is missing in action. I think he was cut in half, much like his missing human counterpart will be. The only items left to complete are the swing set and some climbing rocks. Sydney has been helping me and the Uncle 2 x 4s and we just might complete it if we can ever get her out of the clubhouse. It was a very tiring yet rewarding week end and although I certainly had my hiccups in the road seeing Sydney's happiness in the clubhouse made it all worth while. Uncle Jay 2 x 4 even welled up with tears (okay, perhaps, it was sap).

On another note we have officially received all of Sydney's scan results. CLEAN, CLEAN, CLEAN, CLEAN, CLEAN, CLEAN, CLEAN, CLEAN, and more CLEAN. Yeppers, Sydney continues her complete remission. Every scan was negative with the exception of the bone scan which shows some slight increased uptake in her left proximal humerus. This area has been consistent for a long time and it is not believed to be neuroblastoma. It could be that there is some bone damage. It could have healed incorrectly. Or, it could be continuing to heal. It is one of the unknowns but it has continued to improve over the past year. The spot has not been seen with any of the other tests and everyone assumes that it is unrelated.

Unfortunately, there is much left to say but not enough time to do it. I am off to work, my purpii, and I think I will get together with the Uncle 2 x 4s to finish up the swing set tonight. I will write tomorrow assuming I am still alive.

6:22 AM 6/3/2005


I just realized that I said I would write yesterday assuming I was alive. Oops. Well, I had a pretty darn good excuse and I am, in fact, still alive. Fort Worth experienced quite a storm the other night. There were tornadoes, hail, and strong storms. I am happy to say we made it through, however, we were out of power, phones, and the ever beloved internet access at both home and work. We have gotten pretty used to dodging tornadoes and the routine has become engrained in our minds. For those of you that don't know, or don't remember, Lynley and I survived the tornado of 2000 that came sweeping down our street. We have a closet under the stairs that has become quite the little storm shelter for us. Two nights ago Lynley, Sydney, Graham and I huddled in our makeshift fortress and listened to the radio until the storms passed. I would like to also point out that the monstrosity of a playhouse/swing set also made it through. I know it is not surprising considering how well it is constructed but I was glad to see that all of my work and the work of Uncles Cameron and Jay 2x4s was not demolished. Uncle Jay and Cameron 2x4s even believed in our construction so thoroughly that they weathered the storm in the playhouse itself.

Sydney is one week into this round of her oral chemotherapy and aside from the usual Accutane angst seems to be doing very well. I have been going in to work at about 4:00 AM and Lynley has been given the duties of administering the pills. She has taught Sydney how to swallow them whole. No "chew chew" dance. No running around the pool. Just simply - take your pills. Sydney opens her mouth and Lynley puts them in. Sydney grabs a cup of apple juice with a straw in it and sucks away. Within seconds they are gone. Hmmmm. I don't know how I feel about this. After, all I am "super dad". I must of broke her in. Anyway, I am extremely proud of the both of them for figuring out how to get the job done and doing it better and more smoothly than I. I am amazed that she, an almost three year old can swallow the jelly bean sized pills down whole. It goes to prove to all of the other parents out there in neuroblastoma land that two-year-olds can, in fact, swallow the pills. Just don't ask me how.

For me it is a day of catch up. Perhaps tomorrow there will be more time to write. As I keep mentioning there is a lot to say. Until then I will continue to learn from my pill swallowing, formula sucking, and pill giving purpii.


5:16 AM 6/4/2005

The countdown until Sydney's birthday has begun. In just two short days she will be three. The clubhouse/swing set monstrosity has been completed. The pool has been cleaned. The yard has been mowed. The bouncy chamber has been ordered. The food has been purchased. Now we wait. Tomorrow's party should be much fun. We are having it a day early as we figure that we will need a day of rest and recuperation to recover from the swarm of 1 through 8 year olds that will be terrorizing our house. The only child who will not be present is her beloved Truman who, after a incident of public nudity, has been banned from the Dungan household. Okay, that is not entirely true. Truman and Preston did come over to play with Sydney last weekend. We celebrated labor day with the Robertson's at our house. The kids had a great time. They played on the new swing set. They demolished the toy room. They even took a swim as Sydney dangled her toesies in the shallow end of the pool. It was all of this that led to the culmination of a grotesque display of five year old nudity. While the kids were drying off on the back deck and we were preparing for dinner it happened. The dreaded wet legs/dry underwear conundrum. Truman was caught. He had taken off his bathing suit (under a towel, of course) and was putting on his Shrek 2 tighty whities when they got stuck to his wet legs. In the shuffle to get them loose his towel fell off and there he was, in plain view of my daughter, caught buck naked with his underwear lodged somewhere between his knees and his tushy. I was shocked to say the least. For some reason, when you are young and you get dry underwear stuck to wet legs your first instinct is to run. So off he went. Here we were enjoying a beautiful evening and the next thing I know I have a naked five year old doing donuts around my patio set and MY DAUGHTER as he was trying to pull his underwear up, hopping around like a chicken with its head cut off and his little "mr. happy" flipping around in the open breeze. I really hope Sydney was not impressed but she did the right thing by laughing at him as he made his way around her side of the table. I know what your thinking. These are little kids, 2 and 5 years old to be exact, and kids will do the strangest things. But, I am pretty sure that there is an ulterior motive. If history and memory serves me correctly I am pretty sure that this is exactly the same thing that Truman's father, Chance, did to woo his wife. They always say -- like father, like son. Regardless, I did not make a big deal about it. I was caught so off guard I did not know what to say. I guess I can chalk it up to another day in the life, BUT, I will be watching very closely.

Sydney continues to thrive. Her hair is now about an inch long and aside from the "noodles" sticking out from her chest she has all of the appearances of a normal healthy child. Accutane madness has set in a little but, for the most part, she continues to be the happy girl I have always loved. It is days like this that I am so very much more proud of being a father. Seeing a smile on her face lets me know that I am doing my job even though it has become apparent that Lynley is a better pill-giver than I. (I still say I broke Sydney in. It is exactly like a lid on a jar of jelly.) Well, I am off to work and I busy TGIF but looking forward to a weekend celebration with my purpii and hopefully nudeless event.


5:19 AM 6/17/2004

We made it! There were certainly times over the past weekend that I never thought we would survive it but we made to and through Sydney's birthday party. This was, perhaps, one of the most fun occasions I have had in recent memory and I know, for Sydney, it is one the will be remembered forever. It all began with the delivery of "Mr. Bounce" The oversized, air-filled, bouncy, jumpy contraption. At first sight Sydney was excited that they had delivered a big balloon for her birthday but was completely overjoyed when she discovered what it was. I was frankly surprised at how well it blended in with the rest of our backyard. Now that we had an oversized, giant monstrosity, playhouse / swing set, the addition of a fifteen by fifteen foot yellow red and blue carnival bouncer seemed quite appropriate for our backyard, but, I digress. Once Sydney set foot into "Mr. Bounce" that was it. She had experienced true joy and love and it would require significant coaxing to coerce her out of the contraption on the three occasions that we were successful in the 24 hour period that we had rented it. She was crazed with happiness. Seriously, if you looked into her eyes there was this crazed sparkle of pure joy and she simply would not leave it. We had several other kiddos join the party and I think all of them enjoyed the contraption but, for Sydney, it was perhaps one of the greatest experiences in her life. I guess part of it was the fact that she was doing something so normal. She simply has not been exposed to many of these types of things and it is so nice (but tiring) to get to enjoy watching her experience normal life. Overall, Sydney had a tremendous time and got the opportunity to play with others which was an experience that she had missed out on over the past year. We had several friends and family over and, for me, it was not only a celebration of Sydney's birthday, but also it was an opportunity to thank all of those that have done so much for us over the past year. It was a celebration of life, a celebration of friendship, and a celebration of thanks.

Sydney continues to do well. We are nearing the end of this round of chemotherapy and she is doing better with this course than any of the others. Her skin continues to degrade and her fuse continues to get shorter but it is far better than any of our other trips down this road. Tomorrow she will officially complete this round and we will be given two short days before starting the next round of therapy. It is hard to believe that next week's hospital stay will be our last. Until then, I am going to do my best to recover from last weekends onslaught as we can begin to see the light at the end of the tunnel. My purpose is beginning to experience life.


4:57 AM 6/8/2004

The official last day of round four of immunotherapy is today. This evening Sydney will swallow her last pills and we will have two days of rest before we start our final round of monoclonal antibodies. The next round of immunotherapy will include the combination of GM-CSF and the 14.18 antibody. On Friday, during our next clinic visit (If your wondering if it has been a long time since our last clinic visit, you are correct. It has been over a month.) she will start the GM-CSF. She will receive her morning shot each day for two weeks thereafter. As I mentioned yesterday this will be combined with her last five days of hospitalization which will start early Monday morning. There she will receive four days of the 14.18 antibody. This will be followed by another two rounds of oral chemotherapy for 14 days each and then...... well...... then I don't know. We will be finished. Kaput!! No more therapy and with that the belief that the monster will never come back.

It all seems rather surreal. We have become so used to therapy it has really become second nature. It is what we do. Therapy seems natural. There has been great debate, both on the NBLAST list and in the back of my mind, about the quality of life of these kiddos. As always, I have my opinions. Now first off, my thoughts on this subject are tainted. Sydney has had a very smooth ride through therapy. She has been lucky enough to make it through the experience relatively unscathed and I know all to well that it is not always the case. I don't know what Sydney would be like never having had to go through this therapy. Would she be different? Would she be less of a kitty? Would she be less opinionated? Would she be less demanding? Would she have been more happy? I might be naive but, in most cases, I would have to say "NO!!". Well, that is not entirely correct. I think she would have been less of a kitty. We know that chemotherapy kills her little human cells and there has been no clear evidence in research that it has any effect on kitty cat cells, so, I have to believe that had she not have had chemotherapy she would have had far fewer of the kitty cat cells per pint and they would have not been allowed to proliferate unchecked. Actually, it is my belief that being a "kitty" is her coping mechanism and it is one that we have supported. So, if there is anyone to blame it must be Lynley. (Hey, I am a dog person.) But, that really isn't the point. My point is that Sydney is whole. She is happy and she is loved. So what has been her quality of life? -- Good and judging by the smile on her face and mine I would have to say great. What made the difference? To be honest, I don't know. She just seems to take the process in stride. She is still so young that she does not know that life is to be any different. I think that perspective combined with love and support from family, friends, strangers, nurses and doctors she just kept on chugging. She accepted her reality and made the best of it. I think that is a testament to children. At her age she really did not have to endure the mental burdens. Those were Lynley and mine to carry. We hung our hat on hope and fought to keep a positive attitude around Sydney. I also took it as a learning experience and fought to come to terms with the whole ordeal in my head. I guess I could have looked at it as being unfair or it could have just really made be mad but that honestly never really crossed my mind when I was in Sydney's presence. I was so consumed with comforting Sydney that I never thought to look at it any other way. Were these some of the reasons she has faired so well? I simply do not know. I am, however, incredibly thankful. I can actually look at this experience from a positive point of view. It was and is part of our lives and I think we are all better for the experience. Sounds strange doesn't it? (After all, I am a bit loopy.) The point isn't that we did it because I think we are special. The point is that it can be done. I still don't know why or how -- but, it can be done. So, if you are reading these words and you are sitting at the beginning of this roller coaster ride please realize that it is survivable and thankfully, in our case, thrivable. I am not saying it is an easy road but, as you look into the future to try and figure out how all this will end, please know that it can end well. It can end with happiness and peace. It can be your child's success story. Sydney is happy and there is very little more that I could want for her. Perhaps, I am biased because I am the recipient of her strength, but it has been her who has given my life purpose. It really is all perspective. I think Alex Scott says it best. "When life throws lemons at you just make lemonade."

5:17 AM 6/9/2004

You may not know this but there are problems with being married and having a public diary. Your wife seems to critique your thoughts. I thought I mentioned at the beginning of this thing that I did not want to discuss it? I think Lynley reads it just to see how much trouble she has gotten herself into. She uses it as a "nut barometer", so to speak. It actually works out very well. Sometimes I am really effective at expressing myself through the diary and not as good in person. That is either due to a lack of time on both our parts or the fact that sitting alone to write really gives me time to reflect. Regardless, it seems to be a good way to figure out if we are on the same page in life. I guess it is another lesson learned in this world and yet another hidden positive to come out of this experience. We have certainly become far closer through Sydney's journey. I have always thought that we were a team but the bond becomes stronger everyday and our relationship is now incomparable to that at any other point in time. My marriage gives me an enormous sense of pride. Regardless, this is not what I wanted to talk about. Yesterday, my wife kindly thought to point out the areas that I was wrong in yesterday's entry. I guess you can tell by now that I am the "glass half full" person and she is the "glass half empty" person. The points of view really complement each other and together we almost make a full glass. Lynley pointed out that we still have hurdles to overcome and there were several areas we needed to work on if we truly wanted to consider her whole and normal.

Lynley follows charts. I follow the heart. That really is the difference. I see Sydney as healthy and happy. To me that is success at this stage in her life. With all that she has been through those are ultimately the tests that I follow to ascertain how well Sydney is doing. Lynley has a different approach. Not a worse approach, just different. She compares things. She reads a tremendous amount about childhood development and follows Sydney's growth by comparison to the population of children that are her age. Her definition of normal is that she is acting, behaving, and learning at or above the levels of children her age. That is really the difference in our perspectives. In many ways she is correct. If you look at kids her age there are many things that a "normal" child could do that she can't. Sydney can't write her name yet. Sydney sometimes has difficulty identifying colors. Sydney does not know the alphabet and although she knows the names of numbers she does not necessarily understand their correlation to one another. At her age she should be able to do these things. Is this a failure? I adamantly do not believe so. Most kids have spent the last year in day care or some form of preschool. Daily and routinely they have been exposed to this type of learning. Sydney has not. Her intelligence has fallen along different lines. I know of very few children that know how many cc's are needed to flush a catheter such as hers but she does.

AAAAAAHHHHHHH!!! Unfortunately I cannot begin to address all of her strengths right now and what our plan of attack is. Sydney woke up with "owie toot toots" and is throwing up. I am leaving the office and my diary and going home to see what I can do to help. Until another time. My purpose calls.


8:00AM 6/10/2004

There is not a lot of time right now but here are the facts. Sydney started running a temperature late yesterday afternoon. We were sent into the ER where we continued to run fevers. They took labs and blood cultures. She received some IV antibiotics and at about 1AM last night sent us home to wait. Sydney continues to run a high fever and we are doing just that. I am tired, concerned, and surprised.

6:23 AM 6/11/2004

A full night of rest has my batteries recharged but I am anxious for Sydney to wake up to see how she is feeling today. She speen most of yesterday morning with a tempurature in the 101 degree range. Yesterday afternoon her temperature spiked up to 102.3 but quickly came down after another dose of Tylenol. She spent the remainder of the evening in the 99 range. Other than the fever and the nausea that she experienced the first morning Sydney has tolerated this well. There are times when she would prefer to cuddle up on the couch but, for the most part, she has been herself. Even after this I am still amazed at her resilience. I am pretty darn sure that if I had a 101 degree fever I would not want to be playing puzzles out in the playroom or running around the house but she seems to just take all of these things in stride. The current theory is that Sydney has some kind of virus. She had been exposed to other kids at her birthday party and has been out on the town so it is reasonable that she could have just caught a bug. Luckily her counts are strong so we are hoping that this is just a little virus that got a hold of her. We still have not heard back on her blood cultures but the general rule is that no news is good news.

I think I am getting a strong dose of life after treatment. My mind was quickly switched from what was relatively normal to thoughts of the lurking monster coming back. It is not something that can be controlled. Even though it is far more likely that her unexplained fevers are from a normal virus the thoughts in my mind are of neuroblastoma. You know, unexplained fevers were how all of this began. It was exactly this time last year that we were struggling to find out where Sydney's fevers were coming from. She would spike high fevers at night and then during the day she would be relatively normal. That was until June 20, when she stopped walking. On June 21, 2003 she was diagnosed with neuroblastoma. Tell me that isn't a sick feeling in the pit of your stomach. This is not how I wanted to spend the anniversary of her diagnosis. Regardless, it is not something that I can keep from my mind and in that sense it has been a lousy, nervous two days.

Today we are going in for a clinic visit. This is a routine visit in preparation for our next round of therapy but is also necessary to see how Sydney is recovering. I expect that she will begin therapy today. For the next three days she will receive GM-CSF in preparation for her rounds of the CH14.18 monoclonal antibody next week. This should be our last hospitalization. After this we will be fancy free with just two more months of oral chemo to be administered at home. This is an eerie time in our lives but I am eagerly anticipating my purpii this morning and the beginning of the end of hospital life.

4:30 AM 7/14/2004

We are off. Today marks the first day of our last hospital stay. This morning we will be arriving at the hospital at about 6:00 AM to begin our last round of monoclonal antibodies. I have just gotten off the phone with our wonderful nurses up on the floor and we will be staying back in the bone marrow unit as the floor is full. Although this isolates us somewhat it should make for a very comfortable stay.

Sydney has continued to improve over the weekend and we have not seen hide nor hair of a fever since Friday. She was even feeling well enough for a trip to the zoo on Sunday morning with her beloved Truman. All in all, it was a great weekend and, this time, there were no unnecessary episodes of six year old Robertson nudity.

Well, it is time for me to get my game face on. There are protocols to reread, a BSA to calculate, and dosing charts to review. It is hard to believe that this will be my last chance to play amateur pharmacist but I am so very thankful. It is time to dawn my cape. My purpose awaits.


10:45 AM 7/15/2004

Yesterday was a difficult day for Sydney. We just weren't able to control her pain and when we finally felt like we were on top of it she was so wigged out on pain medication that the side effects seemed just as bad as the, obviously, unbearable pain. I don't know why it works differently every time but this was by far Sydney's worst experience on this therapy. This episode has brought back thoughts of the roller coaster nature of this ride. What made yesterday so bad? I don't want to seem overly dramatic but it was scary and it brought bad thoughts to the forefront of my mind. All of a sudden I found myself uninformed and worried about what the past two weeks and her reactions to the antibody meant. Was the monster coming back? Was that the reason for the unexplained fevers and tummy owies? Was that the reason there was so much more pain with this round of therapy? Are we going to hear the nasty, evil word - relapse? Had Sydney never had neuroblastoma this thought would have never crossed my mind but now it is becoming a constant companion no matter how hard I try and keep it at bay. I knew that the end of therapy would bring several hurdles for us all to overcome, I just did not expect it to hit me with such dramatic force. I am particularly nervous right now. There is no rhyme or reason for my state - it just is. I am not overly sensitive about other things in my life. I am not going through an emotional period. I am just scared and it is a feeling I had hoped would not be relived. Am I wrong? Hopefully, but my confidence has waned over the past few weeks. This is just not me. I have always been confident. I am not a worrier and yet I find myself on unsteady ground. With all that has transpired with Sydney over the past year this is certainly a hurdle I can overcome. Perhaps a good day for my purpose will make it all better.


5:10 AM 7/16/2004

Today was a better day, a better day indeed. Sydney tolerated her second day of treatment like a champ. Although it was not her best day it was far better than the day before. Sydney woke up early in a particularly cheerful mood. At about 7:00 AM we switched rooms and found ourselves back in the comfort of one of the rooms on 3 north. As a special treat we were even blessed with Sydney's favorite nurse Magical Maranda who seemed to make all of Sydney's tummy owies go away just by her mere presence. It is funny how close we have come to the nurses and doctors here at Cook's. They have not only been excellent caregivers but they have also become part of our family. We will miss them tremendously when they are no longer a regular fixture in our lives. They will, however, live on in our hearts.

Yesterday we had an additional surprise. A camera crew was here at the hospital to film a documentary on the importance of children's hospitals and clinical trials. For some reason we were selected to participate and both Lynley and I were filmed and interviewed in our hospital room. Sydney and Maranda even got in on the action as they took footage of them doing what they do best -- veterinary medicine. I think we did fairly well in our interviews but, as always, we could think of better answers after the cameras had stopped rolling. I do not know if we can expect to see ourselves on the big screen as our interviews were both spattered with background meows but it was fun and made us think of how appreciative we are for the people and friends that care for us here at Cook's. Maranda was just happy that they had chosen to film but not interview her. That was, until later that afternoon when they called back to do a special segment with her. They spent a good 35 minutes later that evening grilling her on camera. Poor Maranda.

So, do I feel any better about Sydney's condition (or lack there of) than I did the day before? Not really. The emotions are certainly compounded by seeing your baby girl in pain. I think I always carry some element of fearing for the worst but it really comes to the forefront when I am stressed or Sydney is in pain. I think part of it is my cup half full nature that keeps it hidden away. Heck, maybe it is my ability to hide the emotion that has made this easier. I have just always been more comfortable focusing on the positive than the negative. I naturally just assume everything will work itself out. I believe it will get better so I just motor on until it does. But it is still there. It is still hiding somewhere in the back of my mind. Generally, I choose not to focus on elements that I cannot control. I consciously concentrate on what I can control. But, when you believe your child's life is in the balance there is no controlling it. There is just waiting, hoping, and praying. I know what you are thinking. Hey, get on with your life. You are finished. Just enjoy. If only it were that easy. I will have to learn to forget. For the time being I will do I what I do best and focus on my purpose.


5:23 AM 6/18/2003

We have returned home. Sydney managed through her last two days of antibody therapy fairly well. There was the usual doses of pain but for the most part she just kept jugging through. It really is a bittersweet time for us. We have heard congratulations from just about everybody at the hospital. It has been a long year and we are finally finished with the hospitalization portion of Sydney's treatment. Yes, you heard me correct. We have absolutely no more planned hospital stays. I guess I should be ecstatic. I should be jumping for joy. But, in reality, I am not. It is really rather strange but there is something very comforting about knowing that there is more therapy to come. Before we have always had something coming next. There was always a next leg in the race. But now, there is nothing. This seems to be the point in the journey where we wait.

Don't get me wrong. This is not the end. After all, we still have GM-CSF shots to give. We still have two months of oral chemotherapy to deliver at home and there are still clinic visits and scans in our future. Part of our life, however, is missing. It is really hard to explain. I am very thankful that we have made it this far. I am overjoyed that Sydney will no longer have to endure the grueling pace and rigors of therapy. But something is still amiss.

Over the past two days I have been trying to encapsulate this feeling that I have. I have tried to find the words to make people understand. It is strange. When you step onto this ride and you take your first walk down the corridor in the oncology ward, your first thought (or at least mine) is that "this life is not us." When you see the kids for the first time the first instinct is to think that you are different. There is no way that your child will be like those other children. The smells are foreign. The people are foreign. The language is foreign. At that point in time, your life has been flipped upside down. You have gone from the place where your biggest worry in life was what to make for dinner to one in which you are making decisions which will dictate whether your child could survive another month. Your world has been shaken violently. Friends and family are great. They are your support group and network. They comfort you with love and prayers and, many times, they go out of there way to help your life be more livable. But there is something that is still missing and that is where the nurses and staff come in. They are the ones that help you to bridge the gap. They have seen this before. They give you hope and a means to belong and fit in. They become an integral part of your life and, in our case, valued close family friends.

Let me see if I can put it another way. If someone (a friend, a family member, or just some kind enough to ask) asks me how Sydney is doing. I usually answer that she is "fine." If I go beyond that, their eyes seem to glaze over a bit. Now, don't get me wrong. I appreciate them caring enough to ask and I want them to know that she is okay but, for my health and my sanity, it is not nearly enough. However, when I am asked by a nurse or one of the people at Cook's how Sydney is doing I tell them in medical terms and in detail. I tell them and they now exactly how I feel. They know exactly how Sydney is doing and understand my joys, my worries and somehow that helps me cope. It is someone to talk to that truly understands. Somehow, they know just the right words to say. It soothes the soul. It completes me and it is one of the major reasons why today is so bittersweet and why not being at the hospital is both good and bad.

Well, after rereading my words I have written another substandard paragraph that inadequately expresses how I feel. Over the past two days I have now written six drafts of a letter that is meant to express exactly how I feel and none have seemed to do the job. I will find the words to express how incredibly important they are to me and my family. I guess right now is just not the right time. Suffice it to say, they have been my backbone and my strength. They have given me the hope and the power to help me care for my family. Yes, they gave great "medical" care but it was everything else that really made the difference. For the rest of my life I will never forget the wonderful things that they have done for me and at some point I will find the right words to express it. For the time being I will be incredibly thankful that my purpose is beside me and that she will not have to endure another day of pain to sooth my soul.


4:41 AM 6/21/2004

A year has passed. Have we been doing this for that long? I can't believe it has been a year since we embarked on this journey. Yes, it was June 21,2003 that we knew something was terribly wrong. I remember the day all to vividly. I think our pediatrician does as well. It was this morning at 10 o'clock AM that we were called into Dr. Debbie's office for the talk. I remember seeing her in the parking lot at the doctor's office and thinking that it was strange that she was there on her day off. We had been scheduled to see another pediatrician. And then it came, as we sat in her office we heard the nasty words, Sydney had bone destruction in her left hip. We all knew that it was bad news we just had no idea that it would be, for sure, the worst of our options. I remember sitting in her office and Sydney was playing underneath my chair. Although she could not walk she was having the best time trying to tickle me from underneath the chair where I sat. At that time there were lots of questions but very few answers. It was the weekend and it would be the following Monday, at the earliest (and probably Thursday) before we knew anything at all. At that moment we were dignified. We accepted our fate and we put one foot in front of the other as we left the building. We did not make it far. In fact, we barely made it to the car and settled Sydney into her car seat when the tears and horror came in earnest. Lynley and I held each other and cried as we stood by the front of the car. Little did we know what this would all mean. At that point it was fear of what would become our reality. That afternoon we would awaken Sydney from her nap, deny her cup of warm milk, and rush her to the ER. We wanted her mad. We wanted her stomach empty for the scans that we knew they would need to correctly diagnose her. We wanted answers that day and were not prepared to wait another minute. That afternoon and evening would be a whirlwind and at 10:00 PM we would meet Dr. Eames for the first time, settle into to our new home in room 9 on 3 North, and commence the first two weeks of terror that is the post diagnosis blues. It was the greatest heart wrenching pain a parent could endure short of losing their child. I can't believe it has been a year but as I sit and write I am amazed at how clearly I can see and feel all of the events that are nestled somewhere in the back of my mind. I did not know if we would be here today, a year later, but I am so incredibly thankful that we are. It has been a long hard road but I have also been surprised by all of the blessings it has brought along with it. We are all different and I think it has been for the better. I just wish it had not been this that made us really truly understand the importance of family, friends, love, and life. It is definitely not a lesson to be learned the hard way. I suppose anniversaries are good things. After all, these thoughts, have put life all back in perspective. With the hurried pace of our lives it is easy to forget sometimes. Important things can get lost in the hustle and bustle without even knowing it. This day will serve as a reminder so that I never forget again.

This morning we have a clinic visit scheduled. Today, if all the blood work comes back good, should be the start of another round of Sydney's oral chemotherapy. We have lots of questions for our doctors. Sydney has continued to have trouble putting on weight. Addressing that will be our first priority. Secondly, Sydney has a rattle in her chest and she continues to have a runny nose. We want to nip any sickness in the bud. Third, Sydney continues to complain of "belly owies" and we want to see if we can isolate what the problem could be. Yes, today will be another busy day for the Dungan household, but, not so busy that we will forget our purpose.


4:52 AM 6/22/2004

Sydney's visit went well and we have officially started the fifth round of Accutane. This course will be 14 days long and will be followed by two weeks of --- nothing. Sydney's rattle in her chest was confirmed by the doctors and we have started her on breathing treatments which seem to clear up the problem rather quickly. Home health has delivered a pump to administer these treatments twice per day. As far as nutrition, well, we are walking a fine line. Sydney is eating, just not as much as we would like. It has been decided that we will continue to watch her appetite over the next few days to see if a nightly infusion of TPN and lipids is really necessary. Lynley is of the opinion that it could not hurt and may very well give Sydney's body the shock that makes it understand that it needs more nutrients. I am on the fence and am fairly content to wait and see. Sydney will eat and I believe that she will eat enough volume to truly start putting on the weight. It just takes time and patience to (a) find the foods that Sydney will eat and (b) convincing her to eat instead of just playing with her food. We have had a lot of success with yogurt, carnation instant breakfast, and popcorn with melted butter. On another note, Sydney is currently bulletproof. Although, looking at her, you may doubt it. She is emaciated but her counts are souring. Her white count was at about 37,500 yesterday. Her platelets continue to hang around the low side of normal (and I mean normal kid normal) and her hemoglobin has maintained itself at healthy levels. On Thursday she will receive her last shot of GM-CSF and we can expect her white count to stabilize at a normal level around 5500.

It has been a while since I have mentioned Graham, or Dude-ly as I like to call him. He is over 3 and one half months old and growing like gangbusters. He has moved past the amoeba stage and is now watching the world around him very closely. He is perhaps the happiest child I have ever seen. He loves Mommy, Daddy, and, especially, his big sister. His eyes really light up when he hears her voice. Heck, he loves everybody. Also, his hearing seems to be working at full force. So far he has had a fairly strange existence. He is constantly shuffled along with the rest of us as we juggle clinic visits and, in the past, hospital stays. He just seems to take life in stride and as long as food is not to far away he is content. If I had to describe him I would say Graham is a happy little bundle of joy with an enormous noggin. Sorry, kiddo, but your head is huge. In fact, you could be twins. But with time and your superior paternal genetics I am sure that you will grow into your true state of buffness in no time.

Well, this morning is yet another busy one in our lives and I have to get to work. Here is to a normal life and a regained appreciation for my purpii.


5:28 AM 6/23/2004

Mentally, Sydney had a great day. She was happier than I have seen her in a long time. She was full of love, kisses and, of course, meows. I forget from month to month and treatment cycle to treatment cycle how nice this "in between" period is for her. It is always heartwarming and as a parent you get to be reminded of how happy childhood really is. We do still have some worries, however. The rattle in her chest has continued to worsen and the breathing treatments do not appear to be doing her any good. The wheeze and rattle seem to be getting louder and more frequent. Today we will call the clinic to see if they have any ideas. I know scheduling a chest x-ray would be a pain but I think it would make everybody feel a little bit better.

I have come to find that this existence is somewhat annoying. Even today, with the rattle in her chest, my brain is thinking about neuroblastoma. Could it be coming back? Could it be in her lungs? Is that what the tummy owies are all about? Generally speaking, I am not a paranoid human being. I have better things to do than sit around and find things to worry about. It certainly would not be a good life if I spent the rest of my years in this state debating whether neuroblastoma is coming back because she scraped her knee and has a limp. It is as if, in some way, the other Mark (Yes, the one that was so apparent at the beginning of this journey) has raised his evil incoherent head. I know my worries are somewhat based in reality but for the most part I feel totally irrational and I have spent the last month getting no better at controlling my worries. It is frustrating. I tell my mind not to think about it and the next thing I know is that it is all that I can think about. At those times it is totally encompassing and constricting. The air feels thicker. I can even feel my heart pound in my chest. The stupid part is that I am conscious of it and, yet, I can't seem to make it go away. All in all, it is an interesting hurdle to overcome. I have had thoughts throughout my life that I could not control but they were by no means as incapacitating. I think I will have to develop some type of reward system to recover from these funks. I have to find some ways to deal with it and I will have to come up with some tools to give me some peace and some reassurances. In all that has happened who would of thought that this mental hiccup would have been the hardest for me to overcome. In fact that is exactly what it is like - the hiccups. Hiccups are a phenomenon that I can not control even though I am conscious about it. Perhaps I will try putting a bag over my head or holding my breath. Wouldn't it be great if I could solve this by drinking a coke upside down. Until the answer is found I may very well have a bag over my head but my purpose can still see clear as day.

5:41AM 06/24/2004

This update is going to be short. I am not blaming anybody but Lynley did not set the alarm last night and I am running late. The rattle in Sydney's chest has continued to get worse. She continues to complain of tummy owies and she has also had a 4 day bout of green poopoo. (You really needed to know that, didn't you! Have a great day!!) Other than those symptoms she is completely and entirely asymptomatic. She feels great and she is eating pretty well but we are not seeing the weight come back on. After talking to the doctor it was decided that we would bring her in for a tune up this morning. We are betting on a round of several antibiotics and about a week of TPN to get her past this. I also imagine that they will give her an albuterol breathing treatment as the Xopenex treatments that we have been administering twice a day at home do not seem to be making any improvements.

Last night I took Sydney to see Garfield the movie. We went with the Robertsons and, yes, she sat next to her beloved Truman. I watched carefully and was happy to see that there was no extraneous handholding or snuggling. All went well until we left and she announced "I Wuv you Twuman!!" -- words a Daddy never wants to hear unless it ends in his name. Regardless, we had a good time and it was a nice midweek break from reality. On the way home she was, once again, back to complaining of tummy owies. This time, however, I was not too worried. She and I had spent the last two hours garbling down a large tub of popcorn, polishing off a pound of cotton candy, and slurping up 2 mega-cups of lemonade. Even I had tummy owies. Well ,I am off. We have a busy morning with work, a busy mid-morning at the clinic, and a busy rest of the day with my purpii.

5:44 AM 6/25/2004

The clinic was very busy. We saw just about everybody we knew. Sydney is particularly difficult to diagnose right now. Yes, she is frail and her eyes look sunken in, but her appetite continues to grow everyday. TPN does not appear to be a medically necessary option. She continues to have a cough, a runny nose, a wheeze, and a rattle in her chest but, as expected, when we were at the clinic all of those symptoms were mysteriously absent. She does complain of tummy owies but, never in the presence of our doctors and, usually, this symptom could be explained away by something she had eaten previously or the fact that she is about to have a movement. She also has diarrhea several times per day. Okay, maybe not diarrhea, more like green peanut butter. Yet, she appears to be well hydrated. Lynley thinks that she has dark circles under her eyes and I am of the opinion that they are just sunken in. She has also developed some small pimple like bumps on her forehead and under her left eye. But, other than that laundry list of symptoms, she is completely asymptomatic. She is, otherwise, happy healthy, and playful. She is down right energetic and with the exception of the moments that she has tummy owies she is a completely normal, non-stop type of kiddo. She has no fevers. The chest x-ray came back clear, apparently. Her belly is soft and non-distended. Her ears, nose, and throat all appear clear. So, what's the deal? Dunno. I really don't know. The current medical theory is that she has some upper respiratory drainage which is causing the runny nose, wheezing, and coughing. The fact that she is just out of a treatment that left her malnourished would explain her inability to put on weight, her sunken appearance, and, perhaps, even the diarrhea. The bumps have been called pimples or a skin irritation which are most likely from the Accutane. All very simple and concise, but let me give you a neuroblastoma parent's perspective. She had high fevers about two weeks ago - just like before diagnosis. She has symptoms of an upper respiratory or sinus infection that could not be identified - just like before diagnosis. She has diarrhea - just like before diagnosis. Her eyes are darkening (or sunken) - just like the kiddos that have relapsed in the orbits. You see, I sound pretty convincing don't I.

This is the battle that goes on in the brain. You are always worried and it is difficult to search for reasons that it could not be neuroblastoma. My brain has been permanently switched. Before all of this NB was the last possibility on my mind, but now, like it or not, it is always the first thing to rise to the surface. In retrospect (and after hours of searching for reasons that it could not be NB), she can walk. The fact that her legs are not bothering her is strong evidence to the contrary. Also, her belly is not firm and distended. This is quite different from her original diagnosis. Although kids seem to rarely relapse (25%) at the same location these days. The fact that she is active also bodes well. Before diagnosis Sydney had periods of inactivity and not feeling well. Right now, and over the past week or so, she has shown no signs of slowing down. So, I guess, that could also be construed as different. Where does that leave us? I dunno. I could make arguments either way. I wish there was a simple test. I wish neuroblastoma could be easily diagnosed. I wish there was a silver bullet. Until then, we will wait. We will try and find reasons for it to not be neuroblastoma, but mostly, we will worry. It is still time to find a cure. My purpose is calling.


6:00 AM 6/28/2004

Sydney's symptoms of "whatever it was" have, for the most part, completely vanished. She seems to be breathing much more clearly and I am finding it increasingly difficult to detect a rattle in her chest. The runny nose continues but appears to be less frequent. To be honest, I cannot remember a time in the past year in which her nose was not running. She has had a few tummy owies but all were attributable to the need for food or a bowel movement. We are continuing to give her an oral antibiotic and a child's dose of Claritin just in case. Although she is 8 days into this round of her oral chemotherapy she seems to be in good spirits and her skin is holding up rather well. Yep, she is on the mend. So, what does this mean? Well, since we have nothing better to do and because she will not have to be hospitalized any longer we have decided to finally potty train her. It is going very well. We are only a day into our new, pamperless lifestyle so it ought to be very interesting but, all I can say is so far, so good. We have had a couple of "oops" moments but for the most part she is happy to oblige us. She loves the toilet. She is extremely proud of her accomplishments and we are just as enthusiastic. Her problem right now seems to be her memory. She forgets that she needs to use the potty so we have to ask her frequently - every ten minutes or so. We seem to have better luck letting her go diaper-less and training pant-less but with that comes its own set of problems. For some unknown reason she is really fascinated with the sensation of her naked hinny on just about every inanimate object in the house. She will run from object to object just to test it out to see how it feels on her naked hinny and then she will ask me to do the same. So, off I go to put my hinny on whatever just gave her such a thrill. I know you are wondering. Is he wearing pants or do we have a daughter-father duo running bottomless around the house putting their hinnies all over the furniture? Exactly what are the putting their hinnies on? Do they clean the objects that they put their hinnies on? Do I really want to go over to their house? Would I be putting my drink where a naked hinny could have been? Would I be sitting here a naked hinny could have been? Well, just to ease your mind the answers are:

I am not telling..........

Have a great day and stop by anytime? My daughter and I have a purpose.


5:35 AM 6/29/2004

Somebody still needs to write a book. This should be a well known rule. Yes, I know it should be self evident, but, it wasn't. Rule number 236 when raising a child. If, by chance, your child has neuroblastoma, or an infection, or, for that matter, anything requiring antibiotics, it is common knowledge that diarrhea can be a common side effect. During these periods, if you are potty training, catastrophic messes can and will occur, sometimes with incredible force. It is my advice, as a parent and professional super dad, to wait until after such time that risk of diarrhea recurring has passed to commence diaper-less potty training. Non adherence to this very important rule of parenting could result in an extremely smelly house and endless cleaning.

Potty Training Aborted!

6:00AM 6/30/2004

Yesterday the nice people at Lynley's work sponsored another fundraiser in Sydney's name. Her friends and coworkers have really been tremendously supportive of our family. Many often say that the newness of a new diagnosis wears off of friends very quickly. To a certain extent, I guess, you could say that it is true. Even I feel that way sometimes. But for these people it has not been the case. They have stuck by our family through thick and thin and have been along side of us every step of the way. They have been extremely accommodating to Lynley, letting her work a schedule that has allowed her to be by Sydney's side every step of the way. They have brought by gifts for Sydney and there is not a time that I dawn the halls of the University of North Texas Health Science Center that there is not somebody, known or unknown to me, that is there to offer their kind words of support. They have also been tremendously helpful in aiding us with Sydney's medical bills, and thus, the purpose of this lunch and every single one that they have thrown for us over the last year. I can't really tell you what a warm feeling it is to continue to have support this long down the road. Even after the "hype" has died down and we are no longer faced with daily life and death decisions and the horrendous worrisome burden has been eased from our shoulders there are still bills to pay and mouths to feed and treatments to administer. I am completely amazed by their dedication to Lynley and my family. Just as a side note, so that I remember this in the future when I look back: I looked at Sydney's medical bills today. The total cost of treatment up to this point is well over 1 million dollars. Of course, we don't bear the majority of this burden (that is what our insurance is for) but that number just astounds me. Wow, I was really hoping to make my first million before we spent it. The truth of the matter is that I do not know how much we owe. The invoices that I receive from well over ten different companies show that we owe somewhere between $15,000 and $500,000 depending on which minute of the day that they print the reports. It ought to tell insurance companies that if a one time CPA can't get a grasp on all of the medical bills and insurance expenses without days of tabulating that there really is a problem. It should not be this hard. Regardless, that is not what I am here to talk about. Sydney had a great time at the luncheon. Of course and as expected, she showed up as a kitty cat. She was happy to scamper around the atrium and spat meows at anyone that was nice enough to listen. It was good to take her. We are so proud of how far she has come through this journey and we wanted to share our successes with so many that had gotten us through. On previous occasions she was usually to sick to attend or, when she did, she was often fairly sickly. It was nice to show off our clinical "remissed," fuzzy wonder in all of her splendor. It has been a long road and we thank you once again for sharing this ride with us and, in this case, purchasing the tickets. Thank you from the bottom of my heart. Our purpose is on the mend.

Until the next time......