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

I hesitate to say this because it always seems to get me in trouble, but, Sydney seems to be doing very well. She is, once again, nearing the end of this round of oral chemotherapy and, this time, everything seems to be in good working order. Her skin is holding up fairly well, her appetite is up, and, for the most part, she seems to be very happy. This gives us time to concentrate on things that we have not really done in almost a year. We get to look into the future. We get to plan! At the end of this month we will be traveling to Chicago for the Children's Neuroblastoma Cancer Foundation's Conference. I am really looking forward to it and it is nice that we will be able to go this year instead of sending Monty in our stead. The docket for this year's conference is jam packed with presentations from several of the most prominent oncologists and researchers in the neuroblastoma world but I am really looking forward to meeting many of the parents and the kids that I have become so close to over the past year. We have spent hours, days, weeks, and months talking or writing to these people. They have really become family and it is so nice to have them as a resource when you are trying to make decisions in that strange world. As I look back over the past year it will be sad to see many of them will not return as there were many lives lost this year. I haven't talked about it in quite a while but there are several on the list that have earned their wings as of late and, unfortunately, there are several whose wings appear to be growing as we speak. After a year of being exposed to this first hand it just never gets any easier and the fact that these innocents are losing their lives just gets harder to take. There is still no rhyme or reason. It just is.

Dudely (a.k.a. Graham) continues to thrive although we think he may be coming down with an eye infection. Over the past couple of days his eyes have regularly started producing "gunk" and we noticed last night that the areas around his eyes were starting to appear puffy and red. I am guessing that a doctor's appointment is in our very near future. In the big scheme of things it really is not a big deal but it is something that we are watching closely. Other than the eye thing, though, Dudely is doing great. He is perhaps the happiest child I have ever seen and as long as he has a bottle nearby he is apt to put up with just about anything. I think he is picking up the "jabbers" from Sydney. When he gets on a role there is just nothing that can be done to shut him up and he will sit and talk endlessly to you. At this point we have no idea what he is trying to communicate to us about but, whatever it is, he is very serious about it. To be honest, I think he is trying to tell us a long winded joke because at the end he will often bust out in a large belly laugh. Yep, he is a keeper. A talkative, hungry little mini me. Well, enough jabbering. I have been as long winded as my miniature purpii and it is time to face the work day.

This is a jam packed morning and, for better or worse, there is not a lot to be said. Sydney continues to do well. We are in the process of looking for preschools for her. You see, I told you yesterday we were looking into the future. The key for us is to work on her social skills and to get her involved in some structured learning. We know it will be an interesting transition but the time is nearing when we will be officially "normal" again and, therefore, it will be time for us all to face the grind. Dudely's eyes continue to be massive little producers of gunk. I think we will need to get it addressed before the weekend so I am eagerly anticipating a call from Lynley this morning which will let me know when and where. Other than that, we are good to go and looking forward to a nice weekend at home. Well, they are anyway. My "honeydo" list will keep me entirely to busy. Well, it is time to go. My purpose awaits.

It was a very busy holiday weekend and today marks another momentous occasion -- Lynley's birthday. Now I am sure she will be evil and bitter as she welcomes a new (and larger) digit to her age but all I have to say about the subject is that she is as beautiful as the day I married her and she only gets better with each new year. Lynley, too, is like fine wine. But enough about that subject as I know I will say something that is sure to get me into trouble.

Sydney has officially completed her fifth round of oral chemotherapy. The end of this round was difficult, but manageable, for her. For the last four days she decided that she was no longer going to take her pills. I can't say that I blame her but, unfortunately, that was just not a realistic option. For some reason, she just stopped swallowing them. It was a take back to the days when we first started the Accutane regimen. No matter what we tried she just had no interest in taking them. I had suggested that we retreat to the surefire "chew-chew" train method but Lynley had none of that. Her concern was that Sydney would stop swallowing the pills whole and that we would have to start the (2x) daily hour long process of bribery and dancing to get her to chew up the pills. It has also been suggested that the pills are more effective if swallowed whole and it is also known that they can burn the lining of her esophagus if the capsules are ruptured in the mouth. There were several times over the weekend where she sat in her high chair for hours on end while we waited and re-attempted to get her to swallow the pills. Nothing could be more frustrating for her or for us. The pill taking sessions were often interrupted with crying sessions but, in the end, both Lynley and Sydney would always recover. I felt completely useless. I really could not help. Ever since Lynley started administering the pills by the swallow method I have had to pretty much go into isolation during the episodes. You see, every time I walk into the room she wants to do the "chew-chew" dance and we would prefer her to swallow the pills. So, long story short, I have been ostracized from the twice daily pill taking ceremony. Do I sound bitter? Not really. I do like being a part of everything I can in Sydney's life but I know it is in her best interest if I am sometimes out of the picture. The good news is we now face two weeks of -- nothing!! Which will be followed by her very last round of oral chemotherapy. The end of treatment is drawing very near. My purpose, however, lives on.

Lynley had a great birthday. I think part of the reason was that she decided to tell everybody it was her fortieth birthday. The rest of the day everybody told her how great she looked for turning forty. Sydney and I went out with her to lunch with a bunch of her work compadres and then in the evening DeeDee came over and we met the Robertsons for an early dinner at Edelweiss. The kids had a wonderful time dancing to the German folk music and Sydney took a particular liking to Bernd, the owner and headliner of the folk extravaganza. She spent most of the evening sitting in her high chair at the table dancing back and forth and she would never miss an opportunity to blow him kisses whenever he would sing in her direction. She was having a blast and that, I think, was the best birthday present of all. After everything that she has been through, seeing her so incredibly happy is quite a heartwarming experience. As I looked at her, I was, honestly, just about in tears of joy. It is hard to explain but that two hour period of watching her was better than any round of golf with my buddies, the joy of a success at work, or any night that I have had out on the town. Rarely would I prefer to be doing something without my wife and children but this was truly a perfect example of why I prefer to spend time with them instead of playing golf or going out with the guys. It is too worthwhile of an experience to ever risk missing. Do I make my point? Do you feel the incredible joy that I experienced? Do you understand that life could get no better? Do you realize that this is the reason for living? -- And then it happened!!

It is a complete one eighty. It is that moment that takes you from complete peace to sheer terror. As we traveled home Sydney started screaming in pain. "My leg, owie, My leg!!" At that moment there was nothing I could do other than to race home. Her leg was not caught. It did not appear to be uncomfortable. She was in agony and the crying was getting worse. As I drove home as fast as I could I went through the parental math. What was happening? What led to this moment? Why was she in pain? After living through the last year with Sydney I have become rather adept at this process. It is something you just do. This is another hard item to explain but you leap into action without thought. The process of dealing with a sick child just happens. It requires no thought. In those moments you know exactly what to do and you do it, calmly and decisively. In the background and somewhere in the back of your mind you are doing the math. Although your actions come naturally your mind is in a totally different place altogether. With NB in your past your mental focus is particularly acute. You can taste the fear and feel your heart sink. It is an incredible and complex set of emotions that reeks havoc on your body -- all at once. So, why the fear? One of neuroblastoma's tell tale indicators is leg pain. It is a side effect of the marrow filling with tumor cells. This is the main symptom that Sydney first presented with and the one thing that is sure to send a NB parent into shock. It is not a good thing and it sends your mind racing. What could the pain be from? Here is what we know. The day before yesterday, Sydney had been sitting in her high chair and was complaining that her toes were tingling. She had been in the chair for a while. We wrote this one off and assumed that her legs had fallen asleep due to the position that she was sitting. When this occurred. We quickly removed her from the seat and took her to the sink to run warm water over her legs. This wasn't a medical fix but running water is known to calm Sydney. Within minutes her attention was elsewhere and the tingling was never mentioned again although the incident was tucked away in our mental filing cabinets. Now last might was a bit different. At dinner she had complained of leg pain in her high chair. From what we could gather (or what we assumed, rather) was that she had gotten her thigh and foot caught in the chair while dancing to the music. We readjusted her and not another sound of discomfort was uttered - ntil we got in the car. In the car she was in obvious pain but it was not attributable to anything at that moment. Her leg was lying normally. The seat belt was riding appropriately at her hips. There was no apparent cause. Did she bruise it earlier? There were no discolorations on her leg. Was she experiencing "growing pains"? She seems a bit young. We had no answers but, once again, we stored it in our mental filing cabinet. Upon arriving home she was still in obvious pain. She asked for ice to put on her leg and we obliged. For the rest of the evening and until we put her to bed she would continue to complain but the severity of her discomfort was obviously greatly reduced. After putting her to bed she woke up three times screaming and writhing in pain. We put her in our bed for a while but she opted to play with our tired bodies instead of relaxing and falling to sleep. Later at night we took her back to bed and we have not heard a peep out of her since. So what does all of these mean? I don't know but it is scary as hell. We are going to call the clinic this morning just to keep our doctors informed and see what there plan of attack is. I imagine it will be to wait and watch as only time will tell. I don't like it. Not one freaking bit. My mind is filled with purpose and my body, of shock. I have a need to know.

Yesterday morning we got a hold of the doctor's office. It was decided that it was a good idea to bring her in and have her checked out. Fortunately, we already had a clinic appointment scheduled first thing this morning. I am also happy (well, cautiously optimistic) that Sydney's pain could be attributable to any of the factors that I mentioned yesterday or, for that matter, any one of a hundred reasons that a child could experience leg pain without having neuroblastoma. So, why do I feel a little bit better. I feel better because Sydney did not experience the pain yesterday. She did fall down and scrape her knees on the concrete and she did complain about that, but the terrifying pain, the really scary one, did not resurface itself in the middle of her left thigh. I don't know why, but that seems good to me. It is somehow comforting. My mind can still make the cause seem like neuroblastoma. After all, the pain before diagnosis was sporadic as well. So were the fevers. Remember those, yes, just like the ones we had a couple of weeks before diagnosis. I am watching very closely and I am looking for the tell tale signs but luckily, yesterday, none of them appeared. So, where do we stand? I really don't know. Is it better? I don't' know that either. She had a good day (pain - wise) but it still can not erase the experiences of the last few days. Something is causing intense pain in her left thigh. It happens sporadically but it is happening and it does continue. We need to figure this one out.

As far as Sydney was concerned life was and is great. She has now been off of the Accutane for several days and her mental state has returned. She seems comfortable and happy with life. Yes, Sydney had a great day yesterday. That is also refreshing and that helps my mind to be more comfortable with the pain. After all, I still get much of my strength from her. My purpose is strange that way.

Early yesterday morning Lynley and I scooped up the kiddos and headed to the oncology clinic. It really was nice to get the opportunity to sit and talk to many of the doctors, nurses, families, and friends that we have missed as of late. It is quite a transition when you are not in the hospital or going to the clinic several times per week. In some ways it felt like we were seeing some long lost friends. Both Sydney and Graham were in great moods and surprisingly our visit went relatively quick. Simply put, Sydney is in perfect running order. She has continued to put on weight and although she has not achieved a weight that would be appropriate for her age and height for a "normal" kid she is doing well. It has now been two days since we have seen hide or hair of the intense pain. It is the belief of the benevolent Dr. Handsome than the pain is in fact due to the Accutane. He says that although the side effect is not reproduced in any of our documentation it is in fact a fairly common side effect and a couple of other kiddos have had this type of reaction. Furthermore, some kids even require a dose reduction to curb the pain. This would explain the timing of the pain and the fact that I remember this occurring about 1 month ago. The trick now is to wait. We hope to not see the pain return over the next two weeks. This would solidify the position that it is in fact the Accutane and not something more sinister. For the time being we will watch her closely. We will look for swelling, problems with her joints, and the like. In addition, we are left with treating the symptoms with Tylenol or Ibuprofen. I can tell you that this is a huge relief. I still don't know if I buy entirely into the theory but at this point I am willing to believe anyone that has a good reason for it not to be caused by neuroblastoma. In the back of my mind, however, I will not rest and relax until the pain goes away and stays away.

I spent much of the afternoon meeting with Doug Kingswriter, the CDO of the National Children's Cancer Foundation (the primary funding body for the COG) and one of the architects of CureSearch. We discussed what was needed in the world of pediatric cancer and more importantly, to me, what is needed in the world of neuroblastoma. The NCCF is a large organization that funds research through the COG. Basically, from what I gather, they receive money from private funding, the NCI, and the government and use the funds to support the COG and trials like the ones that Sydney has participated on. Many have harsh opinions of the NCCF due to their history, their ex-leadership, and clear lack of support but I was pleased to see that the new regime was committed to helping the families and searching for the cure. I am not particularly content with how they fund neuroblastoma. The percentage of funds that they commit to Neuroblastoma is well below the rate of occurrence and at least threefold under the mortality rate (per capita). Of course, I am biased, but I believe that if you really want to make a significant impact in reducing the mortality rate of children's cancer, in general, you have to commit funds to the cancers that have the highest mortality rates per capita and, so far, Neuroblastoma continues to be left out as a bastard stepchild. I was happy to hear, however, that they are committed to changing this in the future. I really enjoyed my time with Doug and I was inspired by his commitment to institute change. I believe he will lead the tide to an already new and better NCCF which, in the end, will benefit all children of cancer. There is no doubt in my mind that they are committed to the families and the cure of childhood cancer. For the time being, though, I thank God everyday for organizations and people like the Children's Neuroblastoma Cancer Foundation (CNCF) and Pat Tallungan. Right now, there is a place for families of neuroblastoma, there are people to talk to, and support for everyone touched by this disease. There is a funding body committed to eradicating neuroblastoma and although small we will make the difference. Well, enough. I am off my pedestal and it is time for another busy Friday. My purpii is out of pain.

First off it is important to note that Sydney has not experienced any pain in her legs in the last 6 days. It appears that Dr. Handsome was indeed correct in his assumption that the pain in Sydney's thigh was due to Accutane. For that, we are extremely thankful. Sydney's appetite has continued to increase and her belly now protrudes from the front of her body and "love handles" are appearing over the sides of her panties. Yes, you heard me correctly. I said panties. Not diapers. Not pull-ups. But, real full-fledged "Dora the Explorer," glitter painted, little girl, no peeing in my diaper anymore, panties. Yes, we finally decided that her stools had finally firmed up enough to give it a shot. Sydney is now day 381 post-diagnosis, day 219 post-transplant, and day 1 post-potty-trained.

Yesterday morning started normal enough but, by the end of the day, I had been forever changed. Early in the morning I scrubbed the pool and Lynley did her usual Sunday chores around the house. Sydney woke up and we all congregated on Mommy and Daddy's bed for the premier showing of "Once upon a Potty." In addition, we also had books to read, "My Potty" and "I am a big girl now" and, in the end, a final presentation of a brand spanking new pair of "Dora the Explorer" cotton panties. It all seemed simple enough. We have prepared. But the day would not end there and, as we found out, success can be both elusive and sporadic.

Sydney did a great job. Early in the morning she was quite excited about the theory behind the potty and was anxious enough to have several successes. She had successes because she pretty much stayed glued to the potty. As the morning wore on, however, remembering to go to the bathroom became the challenge and her excitement waned. We would check with her often - usually every twenty minutes or so. So much so, I think she became irritated. We got to the point that we would ask her if she needed to go potty, she would deny the need adamantly, and then thirty seconds later leave poor Dora scarred for life. Yes, Dora needed more than a map to get her out of those messes. At nap time we had the chance to regroup. The plan of the day became - forced preemptive potty strikes. Although this would not help her identify the need to go potty. It gave her the feeling of success. The afternoon would only be complicated by a few mistakes and by the end of the day we were all pottyed out. At bedtime, we would wrap her in a diaper to help her through the nightly flood.

Just before we tucked her into bed I finally got the opportunity to take a shower. I have always found it relieving to go to the restroom prior to a shower. (I know, too much information but it is part of the story line!) And, so I did. I closed the door to the bathroom, stepped up to my porcelain friend, and took the nice, quiet opportunity to relieve myself. What I did not realize was that pottying was now a part of the public domain. Sheer terror filled my body as I heard the pitter patter of little Sydney steps. My mind raced to the lock on the bathroom door. Damn, it was busted. (I will get that fixed first thing today.) The door flung open and Sydney was there to watch me in my full glory. I was caught by surprise. Adult pottying and showering had always been a private experience. As I stood there relieving myself I tried to shuffle my feet to block dear Sydney's view but she would have none of that. I could here Lynley laughing in the other room. Sydney's head peered around the edge of the toilet bowl. Her inquisitive head cocked a little bit. I do not think she had ever seen a man go to the restroom before. This felt like the longest pee of my life and I was caught. There was no stopping now and I was focused intently on my aim. If I was going to be studied I was at least going to be accurate. Sydney looked on in amazement. As I finished Sydney cracked a glorious smile. She was so proud. She shouted to her mother "Daddy went real potty!" She followed that up with "When Mommy and Sydney get big we will go real potty, too." Apparently, in her mind, standing is the difference between real and fake pottying. Amidst snickers I began the clapping to signify success. We all participated. Rosey-cheeked and with a chink in my protective embarrassment armor, I scuttled myself into the shower. Over the sound of the water running I could here Lynley telling Sydney about the difference between boys and girls going potty. I tried to let the experience drift from my mind but it wouldn't, eventually I recovered from the traumatic experience, and I found myself laughing for the next thirty minutes or so. After my shower we put Sydney to bed. It was all that we could take. Now, I tell you this story not to embarrass myself and not to express my joy at the successes that Sydney had on her first day of potty training. I tell you this story so you have to hear the word potty as much as I did yesterday. I have now used the word potty 27 times in this update to my diary. I fear potty is now my life. Potty is certainly on my mind. In fact, I think I will have to end this entry due to my now overwhelming need to go potty. I would look to my purpose for strength but I fear it too may be on a potty break.

Sydney seems to be coming down with something. The drip from her nose has started to change from clear to an off-yellow color. I first noticed it yesterday afternoon. She sounded funny and it took me off guard. I am so used to hearing Sydney's voice without the muffle of congestion that it took my a moment to figure out what the difference was. Yes, Sydney may have neuroblastoma but, all in all, she has been a pretty healthy child. With all of the isolation she has experienced over the past year the common cold has been elusive. Apparently, that has now changed. It will be interesting to see how she feels today. Last night as we drifted to sleep we could hear the sound of muffled coughs coming from the next room. We are, of course, hoping that this is just a little bug that is passing by and not something more sinister. So far, she has not spiked a fever and both her appetite and energy levels continue to be high. We have a pretty good idea of what and where this could be from. Last weekend and pre-potty training we had an extremely busy Saturday. Sydney had three birthday parties to attend. The first was for Sophia, the four year old daughter of Jake and Lynita. Sophia had a birthday party at the Forest Park Pool. Although Sydney could not swim due to her noodles she had a blast wading with me through the kiddy pool. All in all there where about 15 kiddos and all seemed to have a great time. As usual, it did not take Sydney long to overheat and it was time for us to leave within about an hour and a half. The second party we attended was for little Miss Tate, the 3 year old daughter of Dan and Suki. Their choice of party place was The Little Gym. Here about 10 plus kids congregated for a couple hours of raucous play. There were all kinds of things to run and jump on. They had the opportunity to play with the parachute and run and jump on a long, air-filled, bouncy, mattress about the size two king size beds. To say the least, it plumb wore the kids out. What a neat idea and novel concept. The third party of the day was with the DeSimone's to celebrate both Lynley and Alicia's birthdays. This party was centered around a backyard pool but Sydney spent much of her evening running throughout the inside of the house like a chicken with her head cut off. Graham spent the evening imitating a sack of potatoes as he was passed around from person to person as they wanted to hold him. All in all, it was an excellent and busy day but we think that it may have been the impetus of her sickness. With that much exercise and exposure it was, more than likely, the perfect time to catch a germ as well. Hey, this is the price you pay for normalcy - as long as this is just that. It is time to go as it is another busy day. Today we are interviewing preschools for Sydney and there is a mountain to climb at work. My purpose is showing signs of normalcy.

Sydney seems to be unhindered by her "cold." We have given her several medications and she does sound better but we know the cold's symptoms are probably just being masked by the drugs. Yesterday, she was as energetic and playful as ever. Mid morning we set out to visit the Overton Ridge Children's Center. In reminds me very much of the preschool that I went to as a child. We had the opportunity to view the cafeteria, the playground and several of the school's rooms. Sydney even had the opportunity to meet some of her future classmates. It was very exciting and Sydney was thrilled at the thought of going to a "big girl" school. There was and is some debate about which age group that we should put Sydney in. The "young" three year olds are fully potty trained and well ingrained into their social lifestyle. The "old" two year olds are still learning to master the potty and seemed more friendly to her. We really have several goals for Sydney in the upcoming school year but at the height of our list socialization has got to be at the very top. Sydney has spent the last year surrounded by adults and entrenched in a completely different lifestyle than a "normal" child. Although she is advanced in many areas of her development her social skills with children her age are nonexistent. By putting her in a younger class it is our belief that she will have more confidence and, thus, it will be easier for her to pick up the skills. In the same sense, when it comes to her social development she is probably more alike children in the "old" twos instead of the "young" threes. On the flip side of the coin her cognitive and learning skills are probably above that of many children her age. Remember, she has been forced to live in an adult world. So, in short, putting her in an age group below her may not challenge her as much. Then again, I don't remember preschool being about higher math or literature so, perhaps, the degree to which she is challenged isn't that big of an issue yet. I am assuming that the lesson plans are very similar but that realization also prepares me to ask some very important questions. I do want her in a structured learning environment. I want her mind to be busy and I want her to be challenged daily but, for me, at this point, social interaction and learning to live amongst a group of her peers is perhaps the most important initial hurdle to overcome. Regardless of our choices I feel safe and secure in putting our child in this school. They were warm, friendly, and professional. The have even had experience with children in Sydney's position. Just think, in one short month Sydney will be noodleless and institutionalized. Oops, I mean "in school." My purpose is preparing to embark on her brave new world.

Some days I am reminded of where we stand. I am reminded of the cold harsh realities of neuroblastoma. There still are no answers and the monster is still lurking out there somewhere. Today is not about us but another little girl who is fighting for her life. It was not long ago that this little girl stood in Sydney's shoes. Yesterday, her mother wrote:

I am typing the email that I never thought I would need to, but always feared. Unfortunately, it's not the hardest one that I will ever have to do. She is fading fast and fighting so hard to win the battle against neuroblastoma. We felt we needed to tell her the truth about the path she is on. She knows that without a miracle, she will die. She doesn't know that it will be in as little as a week, but she knows it's soon. She was fighting so hard and becoming less peaceful as the hours passed. She was very sad, and clearly doesn't want to die, but she seems to be okay with it now. As okay as an 8 year old can be. My biggest fear is that she wouldn't have anything in her heart but fear and anger when we told her. That doesn't seem to be the case. She wants to talk to our pastor and ask her questions about heaven. She will come by tomorrow morning. She asked the hospice nurse if she could get the pain under control, would that mean that she won't die? She really doesn't want to go yet, but her life is truly so hard now.

She has shingles on her eye, forehead and skull. That eye is swollen shut. The other eye is bulged, swollen closed to a slit and weepy. Her lips and gums are bleeding.

Her pain is fairly under control, but we keep increasing the meds and she can't keep her eyes open. She is afraid that she will die in her sleep and is fighting to stay awake. We've told her that sleeping won't make her die. G.d will take her when her place is ready and perfect for her. She won't necessarily be asleep when it happens. Might not be completely true, but it's sad to watch her fight to stay awake.

I promised her that I would tell her if she was dying. I think we made the right decision, but this is unbelievably hard. I want to release balloons before she dies so that they are waiting for her in heaven. I hope she will take comfort in that. Blessings!

Little Michaela earned her wings early this morning. Life is not fair. With tears in my eyes, a heavy heart, and a empty feeling in the pit of my stomach I will go on. Our purpose has once again been illuminated.

I really take these things personally and, even today, I really do not care to talk about how things are going in my family. There was something in Michaela's mother's words that struck me deeply. It is funny how we can go through the battle of neuroblastoma and seem to go on with our lives. You never forget that your child has had cancer and you are especially mindful of the fact that it can come back. But, with all of your heart, you believe it never will. I think this is partly a protection mechanism and I am able to continue moving forward every day. It is not that I do not fear it. I do. But I do not believe it. It is a feeling stronger than hope and I do not know what to call it. Regardless of its name, I am able to keep it in the back of my mind. I am able to not be totally consumed by the the thoughts and the "what ifs." I am able to enjoy everyday. I guess the best way to explain it is that I think about neuroblastoma everyday but it does not consume me. If it did, I would not function.

And then there are days like yesterday. It becomes real again. I could not get Michaela out of my mind. I could feel it as though it was Sydney. Many people often say to me, "I could never imagine what you are going through." Well, the problem is, once you have been down this road you can not only imagine but you can feel it as well. You have been so close to the end you can taste it and smell it. I am not saying that I know what it is like to lose a child but I do know what it is like to be near the end. I can tell you what it is like when you have no hope. I can tell you what it is like to not know if your child will be with you on the very next day. It was for these reasons that I understood and identified with her letter. I felt it in my bones.

Ultimately, we are talking about a living, breathing, innocent child - just like Sydney or Graham or Truman or Preston or any other child you know. Look into your child's eyes tonight. I do everyday. Imagine. Michaela had the same feelings, concerns, and inherent right to be happy. It was not that she did something wrong. It was not that she was somehow different. For some reason, she was just chosen for this path. And now, she is without life. Suffering until the end. How do you make that okay? How do you accept it? How do you make sense of it? Go ahead, tell me!

These angel "wingings" are pissing me off. I will put a stop to it. I don't know how. But, I will. I have a purpose.

I hesitated naming this entry "The Beginning of the End." That is just a scary title. But, I figure, if I write it for a good reason I will never have to write it for its evil counterpart. Regardless, today is the first day of the last round of oral chemotherapy for Sydney. In just 14 short days she will be completely off therapy. It is a strange and foreign concept but I am sure we will adjust. This morning we will draw her labs, venture to the clinic, and have Sydney checked over during her last pre-therapy checkup.

After much consideration and deep thought I have decided that my beautiful, sweet daughter is actually an obstinate twerp. I know, I know, I should be more forgiving. After all, she has been through quite a lot. But, nonetheless, I am going to stick with my previous conclusion. I don't know what switch was thrown but, at some point near the end of last week, she made the complete and utterly annoying transformation. Again, bad daddy, how can you say that. Well, I will tell you how. Sydney has forgotten how to walk. She is either at a complete stop, dangling in mid air from the chandelier, or she is running at full throttle. There is no midground. There are no moments of rest and relaxation. She is a fury. I have written many times before that Sydney is "full blast," but in comparison to those times she was not event at a partial blast. She is unrelenting, unmanageable, and entirely unbelievable. Lynley and I used to get tired by the end of the day. After working a full day, managing the house, and spending time with the kiddos you are ready to hit a nice soft pillow. Over the past few days that time has come at about 10:00 AM. I really can't believe it. I do not know where Sydney's energy is coming from but she is totally tireless. Is this what three year olds are like? (Don't answer that!! I don't want to know. I am just going to assume that, like her kittydome, it is a direct result of therapy and not my obviously superior parenting skills.) I would love to list everything that she does in a day but the entry would be far longer than this diary in whole. Just accept it. She is a menace.

Don't get me wrong. I still love her with all of my heart and when reflecting back on the day before it is always easy to do it with a smile. But during that day, it is a entirely different story. I have never strung so many "nos" together in my life. Here is a short rendition of what will happen in any fifteen minute period of Sydney's day.

"Sydney, don't stand on the top of the couch. No, don't jump on it either. I am serious. Get off the couch. I said NO!!" Here is the part where I take the bottle out of Graham's mouth and get up to set him down so that I can go physically remove her from the top of the couch. There is the sound of expletives whispered under my breath, then the rustling of pillows, followed by a mad scampering of three year old footsteps as she tears off in the opposite direction.. By the time I have set Graham down she is gone. I hear a mad crash. She is in the kitchen. I run into the kitchen but she is gone. She has left a trail of plastic cups strewn across the kitchen floor. "Sydney." I wait. "Sydneeeeeey." I wait, again. "Sydney please come back in here and clean up your mess." There is no answer. I am off down the hallway to find her. As I get closer to her I hear the pitter patter of three year old footsteps running into the bathroom. "Wham!!!", the bathroom door slams. "Waaaah!!!" Graham starts crying. Through the door I tell Sydney not to slam the door. There are more expletives whispered under my breath. I am off to check on Graham. As soon as I pick him up Sydney starts to cry. She has locked herself in the bathroom. I now have a crying baby boy in my arms and a crying obnoxious twerp in the bathroom. It will be another five minutes before I get them both to stop crying, another five more as I try to squish her yellow blanket under the bathroom door and then five additional minutes before we convince Sydney to calm down enough to explain to her how to unlock the bathroom door. In this scenario it is now 8:30 AM and I am just starting to realize that there are 12 more hours left in the day. That was the last moment of relative calm I would have. Parenting is hard stuff.

I am off. It is time to nap (not really). I have a busy day full of obnoxious, high-stress purpose ahead. Life is good.

Well, yesterday went off pretty much as planned. We arrived at the clinic at just after 8:00AM. Sydney was mobile but, luckily, unarmed. We would spend the next hour chasing her around the playroom. Once we entered one of the post-waiting waiting rooms we would have her confined and she was forced to run circles in the exam room. After a blood draw and a little more waiting we were blessed by the presence of Dr. Eames. This was quite a treat for us. For some reason we have spent most of our time with opposite schedules. When we were in the hospital she was in the clinic and when we were in the clinic she was in the hospital. It was great to spend some time with her. The good news is that Sydney is fit as a fiddle and apparently "normal." I debated that and explained her high energy level. Dr. Eames did not have much sympathy and did not buy into my theory that her unmanageable exuberance was therapy induced. It is apparently "normal kid" behavior. Well, what does she know, anyway. She only has three kids and she only treats several hundred pediatric cancer patients per year. I prefer to live in my own world. Nonetheless we had a great time. We are still waiting on her urine results to start her final round of Accutane but I imagine the final "okydoky" will come some time later this morning. Due to her weight gain she will now be receiving 80mg per day as opposed to 60mg so this ought to be an interesting two weeks.

On another note, we will be leaving for Chicago on Thursday morning. We are attending and participating in the Children's Neuroblastoma Cancer Foundation's Annual Conference. There are almost ninety kids that will be attending and several hundred adults. We also have about ten speakers on neuroblastoma so it should be an interesting event. It will be so nice to finally put a face and a hug around so many of these people that I have come to know over the past year. In some ways it will be much like a family reunion. Speaking of which, I need to get to work. I am working on a presentation for "Lunch for Life" and there is still much to be done. The next few days will be jam packed with purpose.

Our trip to Chicago is right around the corner. I still do not think Sydney quite understands the concept. She does realize that we are going on an airplane. It is hard to explain these concepts to her as she moves really fast. Yesterday, during one of the hundred or so times that she whizzed by me she made some comment about getting on the plane to see the Easter bunny. I tried to correct her but she was already gone. A few seconds later she came back in my direction and I tried to explain the concept but I was only able to utter a few short words before she was gone again. With her current agility and speed I have calculated that it takes approximately 12 trips by me to complete an actual sentence. The funny thing is that as busy as she is 12 trips takes less than a minute.

Well it has been quite a long time since I last stood on my soapbox and I think now is as good time as any. I am frustrated once again with the way things are and although tempered with the more insight (given to me by Sydney) I find the need to express my opinion about the bigger picture and what really matters.

Over the past two days we have been trying in earnest to get Sydney's prescription of Accutane filled at the Eckerd's down the street. Although we have continuous problems with the pharmacy miss filling prescriptions and just down right rudeness we keep going back for our almost weekly beating because it is far closer than many other pharmacies. I guess we are eternal optimists because we always believe that they have realized there mistakes and will go out of there way to be friendly and help us out. Wrong!!! (but not really the point) Monday, Lynley went into the Eckerd's to get Sydney's prescription filled. They called later to say that it needed to be precertified by the doctor and the insurance company. This would entail a faxing process and it would be several days before we got our prescription. We tried to manage the process. We would call each of the parties to make sure each was receiving and sending the fax. Unfortunately, our pharmacy never sent the fax out even though we asked several times, very politely. This would not have been such an issue if we were not going out of town and we would certainly have been far more understanding had this been a new prescription but Sydney has been taking this drug for over five months now. Finally, after no luck with the faxing process, Lynley went down to the pharmacy yesterday afternoon to (a) find out what the reason was for the need of the precertification, (b) see if they could sell us enough pills to get through our trip (without insurance) and (c) to make sure they had the right number for the fax machine at the clinic (both our physician and the assistant had been standing in wait for their faxes which never came.) Anyway, when Lynley got to the pharmacy the pharmacist was on the phone so she waited - and waited - and waited. Finally the pharmacist pulled the phone down and said something to the effect of "I am busy, what do you want?" Lynley replied "I am back to check on the status of Sydney Dungan's prescription." The pharmacist apparently rolled her eyes and told her to go away, there was nothing that could be done and she would just have to wait 3 or 4 days. The pharmacist went back to talking on the phone. Lynley tried to ask the other questions but the pharmacist actually ignored her. Lynley waited to for another pharmacist to return and then politely asked for his help. He was helpful in making sure the fax was sent. He let us know that the 12 pills that we would need would cost $127 dollars and suggested that the insurance company would not cover the cost even if we filed. He also pointed out that insurance required the precertification and gave no explanation as to why? The other pharmacist continued to roll her eyes in disgust and in the meantime was rude (and I mean completely rude) to two other patrons. Lynley thanked the pharmacist and went to find the manager. The manager had been preprogrammed to say she was sorry and that customer service was her main priority. She also stated that the pharmacist in question was having a bad day, had already had a public screaming match earlier in the day and sometimes that just happens. Dissatisfied, Lynley left. By the time Lynley got home she had entered high blood pressure fuming zone. Nothing made sense and on top of that she had been treated poorly. Nobody does that to my wife other than Sydney and Graham. This was my calling. I thrive on situations like this and this is what I love. I decided to call the insurance company. Almost immediately I discovered the problem. Sydney had been precertified for a generic equivalent for Accutane called Aberdeen. Eckerd's no longer carried this generic equivalent and was now carrying Sotret (another generic equivalent). The insurance company was still going to require a precertification. I asked the representative if she understood that this drug was a generic equivalent. She said yes. I asked her if they normally required precertifications when people switched from one generic equivalent to another. She said no. She didn't get it. I asked her if she understood my problem and all of a sudden she got it. It was like a light went off in her head. She said "Oh, I am sorry Mr. Dungan. What a silly problem to have. I have corrected it in our system and you should have no problem." I thanked her and hung up. That phone call took a little over two minutes. I was now off to Eckerd's. This was going to be fun and I had the added benefit of protecting my wife's honor. When I got there I stepped right up to the plate and waited patiently for the pharmacist to call on me. I got stuck with the nice pharmacist. I think they saw me coming. I kindly explained the issue and within seconds our prescription was filled. I did not get an apology. I got a "Hmmm. I should have caught that?" The nasty pharmacist kept trying to make eye contact with me and offer a smug glance. I thought that was pretty stupid as it was just as much her fault as it was the insurance company's. Regardless, I politely paid for the prescription and made a beeline for the store manager. She was under-whelmed to see me. I explained the issue and what the solution was. I explained that this was not our fault. I explained that although this was not an error it was a problem created by how Eckerd's filled out the original precertification . I explained that the problem was created because her pharmacists did not make the connection between the generic drugs. I explained that it was also the problem of the insurance company not making the association automatically. I explained that, regardless, if someone just took a minute to think about it, the problem was obvious - especially to a pharmacist and if they had taken the time this whole situation would have been avoided. I got the same preprogrammed answer that Lynley did. "I am sorry for your inconvenience but my major priority is customer service." She then explained to me about bad days as if I had never experienced one and that insurance companies are difficult to deal with. She did not get it. I chose to enlighten her in my kindest of voices. I said.

"Miss (whatever her name was), I don't think you understand. The problem that occurred was not our fault, yet we have been treated as though it was. You explain to me that it happens. You explain to me that people have bad days but let me offer this point of view. Your store is a pharmacy. People come to you when they are sick, they are dying or when they know someone who is sick or dying. People come to you to get drugs because the have a heart condition, because the have a disease, or in some cases because they have cancer. I can ensure you that in many cases you or your staff's bad day is far better than many of your patron's best of days. Yet no one seems to realize this and, worse yet, they don't have the common decency to take the required step of doing their very minimum much less taking an additional step because they realize that someone could be having a much worse day, week, or year. It is not your patrons' fault that they are sick. They are not a lower common denominator because they dawn you halls. They are people, just like you and me, that just need some help. It isn't about customer service. It is about human decency. I am not asking for a change in policy. I am not asking you to work any harder. I am just asking for a change in perspective."

In her preprogrammed voice she thanked me and told me she would take it into consideration. She didn't get it. What is there to consider? This makes me re-realize one of the first fundamental tenants that I learned in this journey. Someone is always worse off. Be thankful for what you have. You never know when you will be with out it. It is people like this that frustrate me. They just don't get it. Hey, I can't necessarily blame them. Until Sydney was diagnosed I thought I really understood life. My biggest worry was whether the laundry got done or not and boy did it hack me off when my shirts weren't clean. I wish I could make these people understand. I wish I could do something to show them the light. I know nothing will change. I know the next time I walk in the store (which I won't) it will be the same thing. I just wish everyone had the opportunity to walk in these footsteps for just a short period of time. For all of the bad, there is good. I will be happier in my life for the experience. I have a purpose and I have perspective. Okay, off my pedestal.

I have absolutely no idea of where to begin. It would not be enough to say that our trip to Chicago affected me profoundly. It would not be enough for me to say that it was life altering, eye widening, or soul touching. This memory now rests somewhere in my soul beside the loss of my father, my marriage to Lynley, the birth of Graham, the birth of Sydney, and the day this journey started for our family.

The conference, itself, was first class. It was held in a beautiful hotel right on the river in Chicago. I was completely amazed by the level of organization, professionalism, and down right decadence. We had excellent meals. Our children were cared for completely and the families' thirst for information was filled. It was not this, however, that blew me away. The dedicated doctors and researchers of neuroblastoma in attendance were clearly there for our families and whether it was a presentation that answered the question of a parent or whether it was a comment made in the question/answer period following each presentation or whether it was a quiet chat with one of these caring physicians over a glass of wine later in the evening I think everyone left with a warm sense of direction, fulfillment, and caring. It was not this, however, that blew me away. Sydney had a tremendous time. The kid's needs were met completely. This included meals entertainment, activities, movies, and a slew of toys. There were several "kid's rooms" and what seemed like millions of volunteers to help make sure things went smoothly. But this, again, was not what blew me away.

It all came down to a few life defining moments that will forever change my life.

On Friday night we had a dinner. Now, once again, this was no ordinary dinner. It too was first class. The meal was served buffet style and even the kiddos had there own miniature buffet table which was set at their height. It was filled with every food that I think could appeal to a kid and, yes, especially that of a kid whose taste buds have been tainted by chemotherapy. I guess I saw about 60 kids that night. It was later that night after the dinner and as the DJ turned up the music that I would really be affected. The kids naturally migrated to the dance floor as the DJ enticed them with the artful sounds of the "Chicken Dance", the "Macarena", and the "Hokey Pokey." Here we stood as many of these children gathered in a circle in the middle of the dance floor. They were having a blast. They were laughing and dancing and having the time of their lives. Most had been through treatment. Most had been on the edge of their lives at one moment or another. All had been through the rigors of this monster and yet they danced and played as if nothing had ever happened to them. They were happy. They were normal. They were just kids having a good time. I stood on the edge of the dance floor in the background in watchful super dad position. At first I was looking for signs of distress. I was looking for a child in trouble, but, there would be none of that tonight. It was not long before I could feel the tears well up inside me. It was an emotional touching moment for me. Here was Sydney amongst many others just like her. I had flashbacks to just about every moment of her therapy. I remembered the endless rounds of induction chemo. I remembered all of the times that I was not sure that she would make it through the next day. I remembered her surgery along with her morphine rage. I remembered wondering if after being sliced from one end to the other if she would ever forgive me. I remembered transplant. I remembered the mucositus and the skin ripping off of her tongue and sticking to the toothette. I remembered waiting moment by moment to see if her stem cells would engraft. I remembered worrying if I would ever get to take her home again. I remembered the daily trips to radiation and worrying if, because of that, she would ever be able to have children. I remembered the antibodies with the pain, IL-2 with the fevers and the fears that serious conditions could occur at any moment.. With its fast pace, I wondered if we would keep her whole throughout the trial. Every time we got out of the hospital we were starting another round of Accutane which left her depleted and mad. I wondered if I would ever get to see her get a chance to take a break and just be a kid. When looking around the room I realized very quickly that I was not isolated. This sentiment was shared and there were other parents thinking the very same thing. Here we were. We never knew that we would get to this point. We never knew our children could be as happy and carefree again. It was tremendously heartwarming. Once again, I was inspired by the resilience of our children and so happy for this moment. This feeling was not only for the children but for the parents, much like myself, who stood in the shadows of the background enveloped in this shared sense of peace and reflection. At this moment we were faced with our survivors. Every child on the dance floor was a hero and every child had touched the lives of not only their families but of their friends, their distant relatives and, in many cases, the world. They were congregated in one room on one floor with one purpose. They were having fun. They were normal. They were complete. I will never find the words to express how profoundly that evening impacted me. It was a night of memories that will stay with me forever. I realized how incredible our children were and it further affirmed that we were not alone. My purpose has grown. It was not that I did not realize we were fighting for thousands of children's lives. I follow many of them on a daily basis. But, it is quite a different thing to see, to hear, and to touch them. I could look around the room and see what an incredible miracle this was. This was the first event of several last weekend that have changed me forever. This story was that of our survivors and the hope for the future. Tomorrow I will share another perspective as I gained strength and clarity through so many of our angels. For now, it is time to face another important day of ever-expanding purpose.

This is an entry that I know I will not do justice. One of the great things about Chicago was that we were able to connect with other people. There was a certain automatic kinship. I met many people that I follow or talk to on the list. The instance I spoke to them I felt warm. It made me immediately comfortable and safe. I think what I felt was the isolation melting away. At home I am the expert. It is really easy to be an expert when there is no competition and there are so few people around that truly have an understanding of the disease. I would even go as far as to say that I know more about neuroblastoma than many of our doctors. Now, don't get me wrong, they know much more about cancer, pediatrics, chemotherapeutics, and treatment than I will ever know. But, when it comes to neuroblastoma, when it comes to knowing our children, when it comes to facing this disease I am simply exposed to far more information than they ever will be. Right after Lynley, Sydney, and Graham - neuroblastoma is my life's work. It has to be. Regardless, in Chicago I was no longer the expert. I was simply another "expert" in the room. It felt so good to be surrounded by other people who knew and who understood. It was even better to share in that communal glass of hope and, for me, be touched by the hands of our angels.

I received, perhaps, the strongest gift since the first days of diagnosis. I found this through the eyes and the hearts of two dads of angels. Let me see if I can put this into perspective. When Sydney was first diagnosed my mind went to the edge. I could feel, hear, smell, and taste what it would be like if I lost my dear Sydney to this monster. It was the most awful, gut-wrenching ,soul-wretching feeling I have ever experienced in my life. For comparison sake, let me say this. I dearly loved and admired my father. He passed away when I was 15 years old. It was a hard road. It changed me tremendously and, as you would expect, hurt me very deeply. However, that emotion was not even a skinned knee in comparison to the true feeling of even really thinking about the loss of your child. That is not to diminish my dad. I still love him very dearly and have looked to his guidance frequently throughout this journey but I am trying to paint a picture of this extraordinary feeling of loss.

Since the time of Sydney's diagnosis I have not been able to go back to this place. You might say GOOD! But, I have an entirely different perspective. At first, you may assume that it is morbid fascination but it is not. For me, it is a powerful emotion to draw upon and, in fact, it refuels my strength, my perspective, and my purpose. Now, I may be alone here, but it is difficult for me to get to that place. I cannot think what it is like to be without Sydney. My mind will not go there. I don't know whether it is a subconscious protection mechanism or whether it is just something a parent is not allowed to do. I can sit here and say "Okay Mark, think about what it would be like if Sydney was not here." I can think of being without her but it is totally unemotional. I cannot, no matter how hard I try, feel it. My mind won't let me. I can even come up with some sad scenarios (like speaking at her funeral) and even that, although sad, really does not affect me. My mind will not allow me to believe that it could be my reality. I don't feel.

So, why Mark? Why do you have this morbid fascination? Why do you want to feel those moments of terror, of isolation, of pain? Truth be known, I don't want to forget. I don't want to forget one moment of how important this journey has been in my life. I don't want to turn back into the person I was. As Sydney finishes treatment, I don't want to go back to playing golf. I don't want to go back to working 24/7. I don't want to let life go by. I want to feel it. As awful as this thing is I don't want to forget one miniscule second of what I have learned and I am afraid. I am afraid of forgetting what is important in life. I am afraid of not remembering my priorities. That is the reason I reaffirm my purpose everyday. I want to remember every moment and feel how great of a gift I have been given. I don't want my perspective to change. I want to feel. I want to love.

So all of this came down to two fathers. Both were fathers of angels. One lost his son several years ago and the other not nearly as long. I could see it in their eyes. Eyes are powerful. There is a certain expression in the eyes of a parent who is or has been to that place. They are warm an open, however, the shock and the pain is ever present. These parents shared with me. They allowed me to walk into their worlds. I was able to hear the stories - both good and bad. I was able to hear, in detail, about the last few days and moments of their children's lives. They also shared the good times and the scary events that make up the life of a family battling neuroblastoma. They shared with me in a way that I could relate and I could feel. My eyes welled up several times and their were moments that I was able to sneak off to be alone with my tears. I was feeling. I was feeling for the first time in a very long time.

At the beginning of this journey I spoke of two Marks. There was the strong one and the other was fairly emotional and irrational. I lost one of those Marks in the process. But thanks to these parents he is back. He is an emotional sort but he keeps me connected and keeps my priorities in line.

There is no way that I can express how incredible this trip was for me. I could not share any of their words and make them as powerful as they were in real life. My soul was touched and my mind was healed and I like to think that it was a gift from Nick and Lance. I know that I will never be able to bring meaning to their parent's lives but they have changed mine forever. Thank you for healing my soul. Thank you for letting me in your life. My purpose is impenetrable and I am once again whole.....

Sydney had quite a trip as well. Apparently, this trip has had just as much of an effect on her as it had on me. For some reason, she will not stop talking about it and, of course, it is really funny to hear her rendition. You see, she has a little bit of a different perspective on it than I and, furthermore, it sounds quite different. For starters, I say "Chicago" and she says "Taco (or something to that effect)." You know, I say tomäto she says tom

to.

Several times per day, since we returned home, Sydney has decided to relive her memory of our trip. It starts with an announcement. "Daddy, want to go to Taco with me?" Of course, the answer is always yes. The first thing we do is pack. She gets her stuffed kitty (a kitty that we got at the "Build a Bear" store in Chicago.) and places it in a small animal carrier. She usually also gets a cup of juice for the road, several blankets, and a book to read on the trip. She then tells me to load up the "car". The "car" is a large cardboard box that sits in the middle of her playroom. Once loaded we get into the "car" (well, she does, I don't exactly fit). Then we drive to the "airport". On the way to the airport her imagination runs wild. She asks me if I forgot anything at home. She asks if we need to stop to get any gas and she talks at length about how excited she is to get out of town. Once we arrive at the airport she climbs out of her box and we have to get all of her luggage. We carry the luggage out of the playroom and make a circle around the living room before returning to our cardboard box which is now, miraculously, an airplane. We then check our baggage and load it onto the "plane." We load up, once again, and we are off. She spends most of the flight talking about chewing gum so that she does not get "ear owies" and explains that you should just chew it, not swallow it. Here is an important part, the plane flight is not over until I shake the box. After all, planes have a little bump when they land. She will stay in the box until I shake it - no matter what I say. (It just occurred to me that I now have a weapon to keep my child still and sitting in a box. That is important to know with a three year old.) If I don't shake the box she will eventually stomp out of the box, give me a mean look as if I were stupid, shake the box, and then stomp back into the "plane." She then announces "We are in Taco daddy." This scenario continues to play out with a limo ride (unfortunately I do not have a "stretch" box) to the hotel, unloading the luggage, a trip to Navy Pier, then back in a cab to the airport, loading the luggage on the plane, flying home, and unloading the luggage, loading the luggage in the car, a drive home, unpacking the car, and then, and only then, she declares an end to the trip. It is usually something like "Oh daddy, I had a fun in Taco. It is good to be home to see my kitties. -- Hey, dad, want to go to Taco again!" -- Like sands through the hourglass these are the days of our lives. How good is this?

Sydney is currently on day ten of her last round of Accutane. The increased dosage has taken its toll on her skin. Her lips are chapped and her face is extremely dry and peeling. We continue to lather her up with lotion and vitamin E but the toll is far worse this time around. Emotionally she is doing pretty well. We can see instances of "Cybil" but, for the most part, she seems to be content. She has sporadically complained of "belly owies" but as of now we are not yet concerned. It will be interesting to see if her leg pain returns. Next Tuesday will be our last day of therapy.

My purpose is clear and once again my mind is stirring. I am ready to put a stop to this.

We are finally starting to recover from our trip to "Taco." It has been a busy week and yesterday and today are even busier that usual. Sydney and Graham's nanny is on vacation and that has left Lynley and I shuffling to fill the void. Right now Lynley and I are splitting the day at about 10 or 11 AM. She is getting the kids in the morning and I in the afternoon. I am happy to say that there is little drama in Sydney's life right now. She continues to weather this treatment leg better than we anticipated although her lips, face, and hinny might disagree. The are all red, chapped, and peeling.

One of the things that I did not talk about related to our trip was all of the doctors and researchers that came to the meeting. We have been lucky. Sydney's medical team has been excellent. They have been here beside us and have been extremely helpful and caring throughout our ordeal. Unfortunately, this is not the case with many of the oncologists that we hear about on the NBLAST list. I continue to hear reports of arrogance and misinformation on the part of many of our children's treating physicians. For these families (and there are many) this trip was like no other. Not only did they get to hear from the leading researchers and physicians in the world of neuroblastoma but they also got the opportunity to sit in a quiet corner t discuss their children's cases with these doctors. I can not tell you how many times I would look around and see a worried family talking to one of the doctors that attended the conference. That is very special. In our world, when your child's life is at stake and the information out there is missing, incomplete or contradictory, there is nothing better than the feeling of talking to the world's best. We were blessed to have such an incredibly caring group of physicians. I know they don't, for the most part, follow my words here in my diary but I think it is important to let them know how incredibly important they are to us. For many they are the only physician that has taken the time to not only care for their child but care for the parents as well. Thank you, thank you, and thank you.

Unfortunately there is 6 hours of work to cram in the next 4 hours so I had better be off. I am thankful that I have a weekend full of purpose to look forward to. I need a vacation.

Alex Scott passed away yesterday afternoon. She was the 8 year old founder of Alex's Lemonade Stand For Pediatric Cancer Research. Many knew her from appearances on the Today Show and Oprah. Over the last year she has raised nearly $700,00.00 for pediatric cancer research with her lemonade stands. She was an inspiration for thousands upon thousands and for many families with neuroblastoma she was the torch bearing hope that this disease could be defeated. For me, she was pure and kind. She was the essence of what a child is and should be. She cared and she loved and she had such an incredibly happy perspective on life. I will miss her terribly and I feel so much for her parents. Alex often said "when life gives you lemons, make lemonade." I am struggling to make sense of how I can make lemonade from this. Tell me how this makes sense. I don't feel much like talking this morning. My purpose is as clear as ever but, today, "Superdad" has a chink in his armor.

Tonight, at approximately 6:00 PM, Sydney will receive her very last Accutane pill. Could this be the end of treatment forever? Will we never have to subject her little body to chemotherapy, radiation, immunotherapy, blood transfusions, surgeries, and the multitude of other foreign treatments ever again? What a thought. It is bittersweet. On one hand, I am so completely grateful of the fact that she gets to turn back into a normal kid but on the other hand, the fear is still there. I can still taste it everyday and it is the last thought that I go to bed with at night and the first that I wake up with in the morning. I actually have a mental checklist. It is partially healthy and partially mentally unstable. Every night, when I go to bed, I wonder. Did I do everything I could do today? Was I a good daddyy? If she was gone tomorrow would I be proud of my actions? Would I feel like I had done enough? Most of this is healthy. It is a good check to have at the end of the day. I get to reevaluate. I get to learn from my mistakes and I get to make the next day even better. The unhealthy part is that it is motivated, almost entirely, from fear. Fear is the one animal that I just can't seem to get a grip on. The odds are just not in our favor. They are not where they need to be. So, I think about it. I don't so much worry about it as I fear it. It is not in my control. So, I try and live everyday like it is our last. I don't worry about what could come, but , God, do I fear it. As I mentioned before, this will be one difficult battle to overcome.

We now have a break. It just two short weeks we will be in for our last set of scans for this protocol. We will have the talk with Dr. Eames regarding our future and where do we go from here. It will be our final evaluation, so to speak On the 25th of August her noodles will be removed. Yes, I new day is dawning. My purpose is getting a new lease on life.

The last pill is down. I was expecting fireworks. I was expecting a tremendous sense of joy and relief. Did not happen. It was more like a birthday. You never really feel any different on your birthday. I never really feel smarter or wiser on my birthday. It is just another day. It is another hurdle and another milestone passed. You might think that I would be happy that Sydney does not have to endure anymore but I think the fear keeps me from getting too excited. I don't want her to have to endure one more round of chemo or one more surgery or one more dose of radiation or one more transfusion or one more infusion of antibodies but I do not want it to come back even more. We still sit at a tremendously scary point in Sydney's life. It may seem that we can wash our hands and relax but there is a very good reason that they don't call these children cured - too many relapse. I may seem overly dramatic but I'm not. To me it is like killing weeds in my yard. I am by know means a green thumb or a horticulturist but I am pretty proud of the grass in my front and back yard. I take great care to fertilize and I am diligent about regularly putting out slow release weed killer. Now, you should know the only difference between my backyard and my front yard is that I have a pool in my backyard. Other than that, they are pretty much identical. They have the same soil. They have the same grass. They are both well covered by the sprinkler system. They both receive the same level of nurturing care. The difference is that twice a year weeds sprout up in certain places in my back yard. My front yard remains weed free. Why?? I don't know. I have tested the soil. The weed control that I use is supposed to take care of the types of weeds that spring up in my back yard. I treat them the same way. I do the same things. The weedy areas in my backyard do not receive more or less traffic than areas in the front yard. They are not in areas that would be prone to collect seeds from the wind. For some reason, however, in my back yard, the weeds keep coming back. With weeds it is just an irritation but with my daughter it is life or death and it is scary. Although Sydney will not receive any more treatment she still sits on the 50 yard line. In all due reality (and boy do I hate to say this) she still has about a 50% chance of surviving. Yes, after everything she has been through, her life is still in the balance. This is the reason that I am such a research hound. There has got to be something more. If your child made it all the way through this and still only had a 50% chance of survival would you be ecstatic? Would you sleep comfortably at night? I don't think so. Yes, I am forever thankful that we have made it this far but I am still biting my nails not only for Sydney but for the thousands of others out there that sit in her shoes. It just doesn't seem right. There must be more and for that my purpose is stronger than ever.

Although Sydney has finished the Accutane it has apparently not finished with her. Physically she is doing superb. Her skin is returning back to normal. Her thighs are now pudgy. I have no idea how much she weighs but she has lost the sunken look in her eyes and her body has a healthful appearance that I have not seen on her in well over a year. Her hair is now a little over and inch long and she even had her first real haircut (real because it was necessary) the night before last. She now has a roseyness to her cheeks which for the first time appears to be a result of health rather than medication. Yes, she is on the mend - physically. Mentally, however, she is a challenge. We are truly paying the price for spoiling her and on top of that she is three with all that would entail. One moment she is loving, sweet and caring. She is the most adorable inspiration to me and sends the heartfelt message that all is right in the world. However, the moment is short-lived and the rest of the time she is a vengeful, snotty-nosed, argumentative, demanding, cat-torturing, little twerp. She is so much so that it is laughable but also a little scary. This I think is the time in a parents life when you have to wonder. What did I get myself into? My daughter, the one I love and seek inspiration from is clearly trying to wipe this world of cats. I know, it seems strange. She still spends half of her time in the chemotherapy driven side effect of kittydom. She meows like a cat. She stretches like a cat. She sleeps like a cat. She licks her paws like a cat. At times, she even eats like a cat. I would go as far as to say that she mimics cat behavior better than any human on the face of this world. Yet, she was decided to try to remove them from the world in which she lives. I think it could be cat envy. We have 4 cats (Yep, count 'em 4. Not my fault by the way!) Sydney spends much of her time chasing them around the house. She mimics their behavior and, let me tell you, they are thoroughly annoyed.. I think I just figured out where they coined the term "copy cat". Anyway, the poor cats just look at me as to say " Human dad guy, Make this thing leave me alone. Please, for the love of God, make her go away?". In my cats' defense I usually oblige. I am the distraction mechanism and my cats have come to really appreciate me. The problem is that I think Sydney is aware of our conspiracy to provide the cats with freedom from her. She has started to corner them in rooms well out of earshot. She will chase a kitty into a room and then close the door behind her. It is always a race for me to get their because without fail I will find her with a devilish look in her eyes and a cat fearing for his or her life. She has gotten fairly abusive with them and will poke, grab, kick, try to cut them in half while closing the door and the like. It has left me at a quandary of what to do. I know she is motivated by curiosity but I fear for my cats lives. We have tried logic. We have tried punishment. It feels like we have tried everything but when she gets that look in her eye there is know stopping her. I haven't figured out what to do. I do not know the answer. I haven't even figured out what part of therapy to blame this upon. The good news is that I think it is fairly normal. I won't admit it publicly but I think it is perhaps what a normal non-cancer experiencing child may go through. I think I may be dealing with a real parenting issue. What a unique and truly wonderful experience. I might be challenged and I might be tested but, my purpose is clear as day.

Well the good news appears to be that I still have 4 cats that are all alive and breathing. That has become a new check that I must do every night before I go to bed. Sydney continues to do well although yesterday afternoon she started to complain about leg pain. The pain appears to be emanating from the lower part of her hamstring near her knee "pit" on the back side of her left leg. Although we always cringe when we here the terms "leg owies" we think this will probably be attributable to something less sinister. The pain that she had when she was first diagnosed was from the bone and hip joint. Although this could be a sign of NB it is not the first thing that comes to mind - this time. It seems somewhat similar to our experience 2 months ago and it could be related to the Accutane or the fact that she just injured it somehow. Regardless, I am extremely pleased that scans are coming up in just two short weeks. Unfortunately, this is another extremely busy morning. I am back in full blast "Lunch for Life" mode and there is a tremendous amount to get ready over the next couple of weeks. We have added a new twist and I am expecting great things. I will let everyone no more as the launch date approaches. This year will be amazing and there is no doubt in my mind that we will send neuroblastoma research into fast forward. It is going to be an incredibly exciting time. It is time. I have a purpose.

I know it does not have to be this way. We lost another of our brave soldiers recently. I post these excerpts here so that I never forget. I post them so that I can continue to feel and to remember. This family has been very supportive to me since Sydney's diagnosis. In fact, his mom was always one of the first to answer my questions. She has brought me answers and tremendous comfort. I only wish I could return her favor. This is an excerpt from an email I received from her this weekend.

He died quietly this morning at 5:04 am. He started asking to sit up in bed a couple of days ago. He insisted on sitting (well propped, as he had no strength at all) last night when we went to bed. At some point before his final breath, he woke us somehow, and we spent the last minutes (how many?) holding his hands and cuddling our heads close to his. Although he could barely talk, he clearly told us, many times, "Sit me up right now!"

We watched as his breathing took on a pattern of a shallow "pant, pant, pant" followed by a sighing outbreath. I turned to clamp off the line on his fluid bag, which had just run out, and I heard him breathe out. And then breathe in no more. I was still holding his hand, and his father was looking at him tenderly.

Oh, brave, sweet boy. Our nurses tell us they can't believe how long he held on and how he fought until the end. I think he was trying to go as gently as he could on us, disappearing slowly instead of suddenly. For 8 days now I haven't been able to have a real conversation with him or see the spark of sight in his eyes. And now we must learn to live without all of him.

I believe the Angel Gang was trying their best to lure him up. Both yesterday and the day before, we had truly bizzare downpours around 6:00 pm. The sun was low, the rain cast a rainbow over the mountains to the east. But my sweet boy wasn't quite ready to jump aboard. Do you want to know how I know it was the other kids? Because, I swear, it was sunny to the east and to the west of our block. And the rain turned into hail both times, so it must have been coming from pretty high up. I can just see Luke Sweet and all the rest of them up their emptying buckets over our house!

I hope Simon and the rest of the kids are having the best game of tag there ever could be. Simon loved to play tag, and we promised him his heaven would be a place where he could always play tag, where the other people would always say "OK" if he still wanted to play, and where he would never have to be "It" for very long because he liked to scamper skillfully around the play structure to evade capture.

Some days my purpose is clearer than ever even when my mind cannot comprehend. Why God?

Early last week Sydney was complaining about hearing problems in her left ear. That seems like an awful sophisticated way for her to say it. She said "Momma can't hear her" and banged on her left ear several times. Lynley and I gave each other that all to knowing look. At that point we knew there was little we could do but hope for the best. The platinum drugs that she received during therapy can continue to deteriorate her hearing for several years to come. We decided that we would hope that there was some wax covering the ear drum and we scheduled a doctor's appointment with Sydney's ear, nose, and throat doctor, Dr Lowery. (Yes, for those of you with a good memory, he is the one from the smart side of the family) Sydney has not seem him, well consciously at least, in a couple of years and we explained that he was the guy that took the monkeys out of her ears. Yep, I said monkeys. From early on in therapy Dr. Howery (Yes, the one from the slow side of the family if you ask Dr. Lowery) always told Sydney at every checkup that he had to look in her ears for monkeys. This made Sydney far more comfortable but has had the byproduct of making Sydney believe she truly has little monkeys in her ears. So, every night before we go to bed, Lynley and Sydney sit on our bed and clean the monkeys out of Sydney's ears. Regardless, Sydney was excited to go to the ear doctor and was happy that he was going to take the monkeys out of her ears. Lynley and I were just hoping that it was indeed a monkey that was affecting her hearing. As it turns out, her right ear was perfect but her left ear was once again completely occluded with wax. We decided to go in and see if we could get it out with out anesthetizing her. Luckily, with scans coming next week we would have a perfect opportunity if need be. Sydney sat on the table and was a very good girl as he pulled a jelly bean sized ball of hard, crusty, dark, colored wax out of her ear. She winced and cried a little but recovered rather quickly. We were, once again, completely surprised by the size of this "monkey." It has only been 2 and a half months since we last had this procedure performed on her ears and it had already gotten to the point that it affected her hearing. We clean her ears every night and yet here it was, back again. We asked if there was anything that we could do in the future to prevent this but it seems that there just is no easy remedy. The great news is that Sydney's hearing turned back to normal immediately and she is back to hearing out of both ears. I guess there is probably a good moral to this story. I am sure that I could tie in a story about monkeys and always hoping for the best but, for the life of me, nothing really comes to mine. So, for the time being (until my brain starts working again), please assume that I told a really funny story that gave you a chuckle and also gave you hope. Until the next time when my brain will hopefully be as full of cleverness as my heart and soul are full of purpose.

Wow, am I busy. Work is busier that it has ever been and it is really starting to pile up. The good news is that clients seem to be rolling in. On the personal front, starting on Friday, we officially reenter scan week for Sydney. On Saturday I will be helping my mother move from Dallas to Fort Worth. On Sunday, I am officially launching the http://www.LunchforLife.org website in preparation for its September 1st official kickoff. There is still a tremendous amount to do - press releases to finish, packets to put together, website materials to write, stuff to order, you name it. I tell you I just don't have one minute to spare. To top all of that off my brother snuck into town for a visit yesterday. So, this is how I am going to fix it. I am going to go to the golf course this morning and really concentrate on how I could be more efficient with my scheduling. Perhaps that atmosphere will really get my mind going and I will figure out how to get all of this done. Oh, sure, you might be thinking I am playing hooky, but nooooo, this is serious preparatory planning. I might even figure out how to fit 48 hours into the normal 24. Regardless, I don't want anybody to get the wrong idea so please don't tell anybody I am out playing golf this morning. If they ask, just tell them I am working on some scheduling problems.

I have had enough and need a breath of fresh air but my purpose is clearer than ever.

So, I expected to be rejuvenated. You might think I would be better prepared to face yet another day. Well, as it turns out, golf is not as good as a "preparatory planning" activity as I thought it might be. Instead, I found it to be annoying and frustrating. It just didn't seem to make me relax and yet I know how relaxing and valuable it can be for organizing ones life and bringing the stars back into alignment. Yes, I know, it sounds like I am making it out to be a glorified Mecca but, well, it is. It must just be like anything else in life, I will just have to practice. Perhaps, if I play more often, I will become far more organized. It is worth a try. Anything to get life back in order.

I have mentioned before that I was not playing because I did not want to miss a moment with Sydney or Graham and that still rings true. I would rather spend time with my family than be on the golf course. ( I hope the golf gods didn't hear that.) But, what I found out yesterday is that I would rather be on the golf course than at work. So, if I play golf instead of go to work I am not missing out on anything and I am getting the best of both worlds. So, the problem is solved. Boy, I hope my partners don't read this diary anymore. They had better not. They don't have the time. They need to be working that much harder if I am going to be on the golf course.

Sydney is doing superb. She continues to put on weight and her activity levels are in turbo. She is being a kid and nothing could make me happier. She is everything that I would expect from a perfectly healthy 3 year old. She is annoying, obstinate, and demanding. God love her. Tomorrow we are going back to the clinic to have our final treatment checkup and begin the process of preparing her little body for next weeks scans. They really could not come at a better time. We are in need of our quarterly reassurance. Although the grueling schedule and treatments are over with, the fear still remains. It is amazing the thoughts that go through a parent's head. Her belly is now protruded. Just like the belly of any other toddler - healthily robust. But in my head, the fear is there. Is it full of food and nutrition and fat or is it tumor burden? It has been so long since we have seen her with a belly it is rather strange. It should be happy carefree times but I still find my self in a constant state of fear of the monster. It isn't incapacitating but it is fear, none the less. I don't know if I will ever overcome this hurdle but life is certainly livable and it is a burden I am willing to carry as long as it never comes back.

It is clinic visit time. Wow, this is a little strange. It has been nearly a month since we had an oncology appointment. This is going to be fun. Today we will be meeting with Dr. Granger in preparation for all of our scans next week. It should be a rather short visit. We will expect to hear that all is well and it will hopefully be more of a social occasion than anything else. Next week will be when the real nail biting begins.

This weekend is going to be jam packed. My mother is moving and we will be playing junior moving men on Saturday. On Sunday, I will be launching the new http://www.LunchforLIFE.org website for all of the families of Lunch for Life. We are far better prepared this year and I want to get them the materials before we officially launch it to the world on September 1st. There is still a tremendous amount of writing to be accomplished but we are getting closer by the minute. This is going to be good. WE might just hit our ten million dollar mark this year and boy do we need it. I have been gathering facts about childhood cancer and funding. I have been delving into annual reports and funding plans for just about every childhood cancer foundation and institution that I can find and, to say the least, I was tremendously disappointed. As it turns out, the largest childhood cancer foundation in North America, the one that supports the clinical and biological research at over 200 participating institutions and treats about 90% of the children with cancer in North America only received about half of its requested budget from the NCI and the federal government this year. I wanted to find out what that meant in terms of dollars and cents to neuroblastoma. That is where it got even more disappointing. This same organization spends less than half of its budget on actually funding research. Worse yet, the only fund neuroblastoma at 5% of that amount and that does not even come close to the actual percentage of children that get neuroblastoma per capita or address the fact that it accounts for well over 15% of the deaths. So, I put my brain to work. (After all, in a previous life I was an accountant.) What would make the difference? Well considering this organization spends a little over $.02 of every $1.00 raised on neuroblastoma, at this rate, they would have to raise 15 times the amount of private funding they did last year to meet the budget shortfall in neuroblastoma alone. This is our largest supporter of neuroblastoma research. This is the big dog. I haven't decided whether I will provide this information on the website. I really don't want to make this organization mad. This is an organization that I like. After all, this is the same organization that has financially supported the two trials that Sydney has been on. Right now, in our world and the world of childhood cancer, it is the driving force. But, something has to change. Doesn't it? Is it just me, or is this just wrong? No wonder researchers and doctors are screaming for more funding. No wonder we don't have the cure. Why can't it be easy? Why can't we just change it? If we don't, who will?

I thought I would put it into perspective. The government has a contract to build 300 bombers. Here is the test question for Monday. If the federal government built 299 bombers instead and committed the funding of just one of those bombers to pediatric cancer research funding how many years of research would that fund at current spending? You won't believe your ears. What is the cost in children's lives? You won't want to hear. I forgot how much fun it was to be an accountant. We will have the answers on Monday.

I can finally take a really large sigh of relief. We finally finished the website and it is up for all of the parents to go through. There is still a lot to be done but my days of 4 hours of sleep a night are over for a while. I am really glad as I was starting to get loony - well, more loony. I think that we will be ready for our launch to the world on September 1st without a problem. The big thing now is lining up the press and getting the other pediatric cancer organizations involved. I imagine it will be a couple of busy weeks of talking on the telephone. Luckily most people sleep normal hours so it should not affect my sleep patterns one bit.

Sydney's doctor appointment went superbly on Friday. She has gained a little over 2 pounds since our last visit. Her counts are way up and she got the stamp of approval to go ahead with scans and surgery and, well, life. The good news about being so busy lately is that I did not get the opportunity to worry about her upcoming scans (as much!) Tomorrow we will be going in for her bone scan and her CT. I have no physically apparent reason to worry about the scans but I have a tremendous amount just because of what we are dealing with. One foot instep of the other Mark.

After finishing the website at midnight on Saturday I got the opportunity to spend most of the day with Sydney and Graham. We had a blast. Sydney is extremely talkative and, most of the time, loving. She likes to explain things. For instance, we were playing the imaginary grocery shopping game. We pack up - literally. We get all of the things that we need for our trip. We get juice cups, blankets, extra diapers, the ever important grocery list, you name it, we get it and we hop into the imaginary car. We put on our imaginary seatbelts and we drive to the imaginary store (I think we get the picture). Any way, when we were shopping at the imaginary grocery store Sydney decided to give me a fifteen to twenty minute dissertation on what type of foods produce what type of potty. We agreed on most items. Water and milk produce peepee. Most solid foods produce poopoo but we got into a rather heated debate over what type of potty juice produced. Her theory was "owie poopoos." Mine was peepee. She would have none of that and was clearly agitated that I challenged her superior knowledge of potty. God, it was fun. I really, really love being a dad. It just doesn't get any better than that.

Unfortunately, we lost another of our children to neuroblastoma yesterday afternoon. Little Haley Rose earned her angel wings. I have followed the family almost daily and spoke to her mother frequently when they were first diagnosed. Haley was a beautiful, strong little girl. Her eyes were as pure and full of joy as any that I have ever seen on any child. Although she was well behind Sydney in treatment the monster just would not go away. So say a prayer for a family who is sitting somewhere in America this moment trying to cope with the unimaginable. Give them strength and peace. I can feel it so clearly and my heart pains for them. I just isn't right. It just doesn't make sense. Why? Why? Why?

My purpose has been strengthened again. I am armed with their memories and I can feel it.

Okay, I know it is strange that I am writing at night but this is the first time I have really needed this diary for myself in a long time. Right now, everyone is asleep. I am alone with my thoughts. I am bothered and uptight. I cannot get little Haley Rose out of my mind. I keep going back to her website and looking at the pictures and reading her mother's words in utter disbelief. This can't be right. She can't be gone.

I think I have turned into somebody new. I am definitely no longer than man I once was. I am so more aware. I am so more feeling. It is an extremely wonderful gift to come from this tragedy but it also comes with many burdens. I can no longer accept the way things are and I find myself frustrated. It seems so clear to me and yet in the world that exists outside of my mind I know it is not. Why can't we fix this? Why can't we just make neuroblastoma go away? Why do these innocent little kids have to be taken one after another? At what point do we just say stop? At what point does it have to get before we say this is no longer acceptable?

Now, I realize I don't live in a vacuum. I realize that we live in a world of limited resources. I realize that there are other cancers, other diseases, and other tragedies. I realize, but I still can not accept, and I wonder. I wonder what makes the difference. What makes one cause chosen over another? What makes one life more important than another?

I am now on the inside looking out and I can't figure out why this was never important to me before Sydney was diagnosed with cancer. Why was I not affected? I think the reason is that I was not aware. I had no concept, no frame of reference to understand what these children and families were enduring. I certainly had no idea of the pain, and yet now, I feel it on a daily basis. I have thought about what it would be like if I lost Sydney to this monster. It is real. It is not one of those thoughts that just floats through my mind. I can feel it and taste it. Now, when I hear about the loss of another child it actually creates a physical change. My heart starts to race, my breathing becomes shallow, and I can feel a lump in the back of my throat.

So, what is the difference? Why should it matter and does it? I can no longer let things continue on the path that they do. I think part of my frustration also stems from all of the funding research that I am doing. I was looking through the National Cancer Institute's budget. This is the federal entity that doles out money and resources for all things cancer. Their federal budget was $4.6 billion last year. Of that, pediatric cancer received $154 million. All pediatric cancer. That is about 3%. 3 percent of the federal cancer research budget was spent on all childhood cancers. Is it just me? Is this shocking to you? To me it is but I no longer know if that would be shocking to me if I did not sit in this world. Considering that, right now, today we are spending over $1 billion per day on military spending. I am not advocating that military spending is not important. I think it is but can't we just convince them to take one afternoon off. I don't think it would put our lives at risk and it would save thousands of children's lives. It also goes to show that when something is important in our society we find a way to come up with the solution. Look at the response that we had to the Trade Center bombing. In less than a week we raised more than the yearly budget for childhood cancer for the families of those that lost loved ones in the tragedy We lost close to 3000 lives in a few minutes. With childhood cancer we lose that every year. Why isn't it important? What is the difference and how do I fix it. What can I do right now to fix it? I certainly do not have the answers and I feel like I am turning into a childhood cancer zealot. Am I?

Yesterday was our first full day of scans. Sydney had a CT and a bone scan. Her CT went off without a hitch. She was a great little girl. She loves the CT scanner and, to this day, every time we go to the hospital she asks if we are going to go to the "Sydney tunnel" I stayed in the room with her throughout the procedure. She lied down on the bed and was absolutely still. I talked to her about pretending to be a sleepy kitty and she closed her eyes and stayed motionless for about 10 minutes. She did better than I could have done. The second scan, the bone scan, however was not so nice. By the time we had gotten injected and they were ready for her it was about 3:00. It was now, 3 hours past her nap time. She had spent most of the morning without food or drink and to say she was ornery would be an understatement. I love my daughter to the moon and back but, boy, was she awful. Sometime between the CT scan and the bone scan a switch was flipped. She became angry, obstinate, and maniacal. She would not stay still which meant we had to do the bone scan over and over. They do the bone scan in about three sections and then they take another view of her head from another angle. During the first three scans she was constantly moving and she was doing it just to be a twerp. The last scan of her head went pretty well. Her head had spun so much during the earlier scans that it actually came off and we were able to just sit her head on the table for this final scan. By about 4:30 we had finally finished about 12 minutes worth of scans.

As usual, I played amateur radiologist. At first, I was horrified by the results. There was a huge black goober on her left leg, mid calf. I knew this was not good but I was quickly corrected as they were nice enough to point out to me that it was, in fact, only the mouse pointer from the computer. Now with that being said. Here is my interpretation of the results. I did not see any obvious signs of cancer. For the most part, what was white and grey was supposed to be white and grey and what was supposed to be black was black. Her growth plates were darker this time around but that was probably just a result of the contrast material. I was concerned about her cranium and her jaw line. It looked to me as though there was far more uptake on her right side than her left in one of the sets of scans. I told the radiologist that I was going to be nervous for the next week. She pointed out that the difference could be due to her positioning and that she did not see the same thing in another view that she pointed out to me. I don't think Margaret was impressed with my ability to play amateur radiologist. So, in the end, I really don't know. We will just have to wait and see. I really am not a big fan of scan week.

Today is a day of rest. Our next set of procedures will occur tomorrow. I will be home with the kids as their Nanny has been hospitalized and we do not expect to see her back for at least a week. We are hoping that she is okay. We really have not heard much about her condition or which hospital she is in. I really don' mind staying at home with the kids. I am used to spending a ton of time with them and with all of the work on Lunch for Life I have not really gotten the chance to focus on them as much as I would like. This will be a great day.

Yesterday was a great day although there were two bloody episodes. First, I am proud to say that my manly son has cut his first manly tooth in his little slobbery manly mouth. Much to Lynley's chagrin I still call him "Dudely" (emphasis on the "dude" part.), but Graham (as she calls him) continues to grow and flourish. He is perhaps the happiest child I have ever seen in my life. Over the past few months he has become far more animated and his little personality is starting to show through in flying colors. For me, it is a chance to relearn life through his eyes. I forgot, in just three short years, all of the wonderful things a child his age (almost 6 months, can you believe it?) is discovering. It is the pure joy of seeing things for the first time. They are really simple things like his reflection in a mirror, a butterfly outside, the taste of banana yogurt. In his world these items are all brand new. He has such complete joy when he discovers these new things. It reminds me how tainted we become with age and how familiar we become with life. We forget to take a moment to appreciate the littlest of things. He is only an infant and yet I am already learning from him. Thank you, Dudely.

Our second "gorefest" that occurred on the day that Mr. Mom was in charge was Sydney's sliced up toe. Now, I told Lynley that after I had taught her to chop up cheerios with a meat clever she seemed to be in control of things. So, I thought I would leave her for a moment and go watch TV and drink a beer in the other room. (By the way, Lynley did not appreciate my sense of humor.) Really, what happened was that Sydney was trying to move some chairs on the back porch and she accidentally dropped one of the metal legs onto her pinky toe. She received about a half inch gash running from the base of the outside of her toe up and over the top of her little toesy. She really sliced it up pretty good. I immediately took her into the kitchen and washed it out, put some bactroban ("top it" in Sydnian, I guess she got that from us telling her we were going to put something of "top of it.") and a band aid on it. We snuggled for the next hour and although she had a limp then, by the end of the day she was once again running around the house like a Sydney with a purpose.

Today will be our last set of scans and tests for this round. Sydney will have an MIBG scan, a bilateral bone marrow aspirate, an ABR (hearing test), an EKG, and an ECCO. She will be under anesthesia for all of these tests and procedures. It will likely take most of the day and we will not expect to hear any of the results until at least tomorrow. It should make for a very busy day and then a nerve-racking couple of days as we wait to hear the "all clear" sign. Until then, I still have a purpose.

Scan week is officially over and now we get to sit back, bite our nails, and wait. Yesterday was fairly uneventful from the scan point of view. Sydney was sedated at about 1:00 PM and she slumbered through the multitude of procedures without a care in the world (until 5:30PM). We still have not heard back on most of the results but we did get the chance to sit down and hear about the results of her ABR (hearing test) and this is the unfortunate part. Sydney ability to hear has continued to deteriorate over time. She now has moderately severe hearing loss of the high pitches in both ears and it appears that her right ear, the good one, is now worse than her left. This was somewhat expected but we certainly were hoping for otherwise. It is not believed that her hearing will ever improve in these ranges. The scary part is that we have started to see deterioration in both the mid and low ranges in both ears as well. Her hearing loss is just above the point, and I mean just above, where she has the ability to recognize speech. The good news is that this could in fact be temporary. They found some inner ear pressure problems which could have effected the accuracy of the test in these ranges. The plan of attack is to wait and retest her in the booth in about three weeks. If it shows improvement we may be able to skate by without having to get her hearing aids. If not, however, hearing aids will be in Sydney's very near future. As with everything else in this journey we are just going to continue to put one foot in front of the other and hope for the best. At the beginning of this journey we realized that there would be a high probability that Sydney would have hearing loss from the ototoxic chemotherapy regimens that she was to receive. We knew it was a risk of the therapy. I don't like it. I don't want her to have to face another hurdle as I think she has a lifetime of her fair share already. But... I can touch her. She is still here. And If I have to shout from the rooftops to tell her that I love her then that is exactly what I will do. It isn't fair and it isn't right but it is what it is. We will do what it takes! God love her, whether she hears you or not.

I love my oncologists but they qualify everything. That is probably due to the fact that I start pounding them with questions the second the scans are complete. Most of Sydney's scan results are in draft form but we have received some very good preliminary news. Sydney's CT scan was negative. This means that they did not see hide nor hair of bulky tumorishness. Sydney's Bone Scan found the same things that it always finds. There is some destruction on her right