Dad's Diary

The Beginning June 21, 2003 - August 31, 2003 Diagnosis, Induction, Stem Cell Collection	Induction Sept. 1, 2003 - Nov. 30, 2003 Induction, Surgery	Transplant Dec. 1, 2003 - Feb. 28, 2004 Transplant, Radiation
Antibodies (CH14.18) Mar. 1, 2004 - June 30, 2004 ANBL0032, Accutane, CH14.18	More Antibodies (CH14.18) July 1, 2004 - Sep. 30, 2004 ANBL0032, Accutane, CH14.18	Relapse? Oct. 1, 2004 - Dec. 31, 2004 Relapse, chemotherapy
Antibodies (3F8) Year 1 January 1, 2005 - December 31, 2005 Sloan Kettering, 3F8, Radiation	Antibodies (3F8) Year 2 January 1, 2006 - June 30, 2007 Sloan Kettering, 3F8	Remission July 1, 2007 - Current Looking for answers

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.

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.

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.

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.

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.

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...

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.

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.

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.

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.

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.

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.

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.

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...

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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