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 am completely feelingless. Don't get me wrong, I am still loving husband and SuperDad but I am utterly feelingless regarding Sydney's condition. I am guessing that because I feel this way this morning, tomorrow I will be the embodiment of a basket case. But, for right now, this second, I am empty. I have no fear. I have no excitement. I am utterly devoid of feeling. Once again I find myself asking if this is a protection mechanism or the strength that I had asked for from God. Regardless, my "what ifs" are not of Sydney's condition but rather how I am weathering the storm. I don't particularly care for my lack of emotion but I am guessing that it is better than the alternative. There certainly is a lot to be worried about if I could bring myself to it.

There are several issues that I could discuss, several conspiracy theories to address but, right now, I just don't feel the least bit of inclination to speak of them. Sydney continues to do fairly. There is a lot of nausea and complaints of "belly" pain but there are also sustained flashes of the Sydney we have grown to love and, well, -- endure. She is still bossy and at times playful but most of her time is spent sleeping or lying down. We are still forcing her to run the halls and get exercise and after a few minutes of complaint she is off and terrorizing the playroom. She is not eating or drinking which is not surprising as everything that goes down only stays for seconds. We are working on keeping her putting food and drink in her mouth even in miniscule amounts. It is more the habit than anything else. There are still some meds that she has to take orally and it will only help if we provide some form of tolerance. With the right combination of nausea medication, timing, and volume we have developed a pretty routine method which seems to work. Again, it is not enough to nourish her but it is enough to keep her in the habit and to keep her medicated. It is the balance that we do not want to loose.

Sydney's renal panel is off this morning. This is not a particularly good sign. They have redrawn her labs to check for accuracy. Hopefully, we will find that they were miscalculated and we can avoid sheer terror. Once again, I am feelingless. I have no doubts as to her success so, right now, it simply does not effect me. It is strange to live in a world without emotion. I am still debating whether it is good or bad. Strange, huh? Nevertheless, I am with purpose and without fear for I am SuperDad.

I wish I had better news but then, I guess, this is what is expected. There are still flashes of Sydneyhood but for the most part she is resting and watching movies. Sydney is still incredibly nauseous. I imagine this will be a mantra that I will be chanting everyday. The sores on her chest appear to be worsening and a blood blister has developed on her tongue. The blip on her renal panel from yesterday seems to have corrected itself although I know this will be one of our biggest hurdles. I guess you could say that I have insider information. So, I am saying some extra special prayers. I was fairly clever as I had saved some prayers early on just in case I needed them later on. I am even practicing a renal cheer and am gathering all of my powers so that I can talk to Sydney's kidneys and liver much like I have done in the past with her blood. Yes, I know -- Nuts!!! but it worked in the past so I am certainly fully prepared to do it now (Plus, Squishy said it would be a good idea.)

This morning Sydney will be receiving platelets. Her "blood bondo" tank seems to be running on empty. We are hoping this will put an end to the bloody noses and coughing up of blood. She isn't coughing up a significant amount of blood although it was expected. To best explain it would be to compare it to the peach flavored jelly belly. (Not the taste, but the appearance.) Her mucus is yellowy orange with occasional red speckles. Her nose bleeds are just that and are dark red in color. (For those of us who need food comparisons this would be the cinnamon jelly belly)

Speaking of food, "Rice" is now a fat banana (not the jelly belly). Lynley and I went for a follow up ultrasound yesterday and I am happy to say that everything is going as expected. Rice appears to be the appropriate size and weight and his bodily functions and heartbeat appear to be normal. Additionally, it appears that he is also a fuzz sniffer. Although I am not aware of a maternal blanket that exists in the womb, he certainly appears to be rubbing fuzz on his forehead and nose. This is actually good news because I had some concern that this child was not mine but seeing him rub his nose and knowing that Sydney does this it must be hereditary. I also know that the mailman is not a fuzz sniffer. My paternity concerns lie in some very graphic pictures of Rice. He appears to be - ahh - well - well hung. The ultrasound pictures that we have from the womb seem to be right out of the pages of PlayGirl. It was shocking to say the least and brought great doubt to my mind that Rice was indeed of my seed. But knowing that he is a fuzz sniffer I am again without doubt and proud of my strapping young son, a child even Uncle Leroy would be proud of. Well, enough of that, it is once again time to dawn my cape for I have a purpose.

Today I just do not know what to say. Sydney's transplant will occur at about 1:30 PM and as soon as we have an all clear I will be sure to let everyone know. Once again, I feel prepared for the process. I know the issues. I know the concerns and all of the "what ifs" have been addressed. Perhaps, I will have more to say later.

I have spent several hours this morning talking to nurses. The talks were less about Sydney's condition and more about life, liberty, and the pursuit of happiness. Sydney has been fairly pukey this morning and it is obvious that she is continuing to deteriorate. I preface this with the fact that the deterioration is expected. I think this is partly the reason behind my state of comfortably numb. I have never been more prepared for anything in my life and there is fairly little that shocks me. Sydney's platelet transfusion yesterday went off with out a hitch and it has appeared to temporarily put a stop to the nose bleeds. Unfortunately, the blood has moved to her urine and we are starting to see trace amounts in her diapers. This could be the consequence of her low platelet count yesterday or it could be from the fact that her kidneys are working so incredibly hard. Both her elevated BUN and Creatinine levels are an indication of this. I would just assume that this would go away. It is not a good sign but it can also be a relatively benign side effect seen in many kids that have been exposed to this protocol. Sydney is still herself. She is still roaming the halls, laughing, arguing, cuddling, and doing all the things that are Sydney. She was slowed down but she is still the little snot that I have grown to love. She officially has level 2 mucositis but seems to be tolerating it fairly well so far. She was only in need of a single dose of pain medication yesterday. Sydney is still flushed and we are yet to find the cause. Basically, she appears to have a sunburn. Her tushy is beginning to deteriorate although she still has not developed an official diaper rash. SO there you have it the official state of Sydney.

Today will be very interesting and we are hoping that it is one of those things that is just full of hype. We are hoping for a very dull and boring stem cell transplant. The precious stem cells will arrive in five frozen baggies. They will be individually thawed in a cool bath. Upon turning back into liquid they will be reinfused back into her through her central line. It will be very similar to a blood transfusion with the exception that we will have a room full of people and medical equipment. The procedure will take place in our room. The entire procedure will take about an hour. If we see some type of allergic reaction we should see it within the first 15 minutes or so. Fluctuations in blood pressure and wheezing will be things that we are looking for. There will be a buffet of medications and medical apparati at the ready to deal with anything that comes our way. We are praying for a very uneventful afternoon but prepared for something different. This is one of those major hurdles in our marathon and we will not snag our toe. I am off to stretch for I have a purpose.

Stem cells are in. Sydney had a rough time with nausea during the infusion. Currently her pulse is down and her BP is up. These are fairly normal occurrences. She is resting peacefully. She passed out from sheer exhaustion immediately after the transplant. Keep praying -- we have a purpose!!

All right, now I am starting to get a little nervous. I am guessing that renal labs are the kryptonite for SuperDad in NB world. This might also be the direct result of being prepared or having a wife that is pretty clever when it comes to body chemistry. Sydney's renal panel continues to be off. Sydney's BUN and creatinine levels continue to be off. Her BUN (Blood Urea Nitrogen) is up to 37 (8 - 20 is normal). This is a count of the nitrogen produced by the urea that has been left in the blood because the kidneys have not been efficient at cleaning it out of the blood. This is a sign that her kidneys have taken a blow and are having a tough time. Similarly the Creatinine test is looking at how efficiently the kidneys are cleaning the blood of creatinine. Her level is .8. These tests are usually run in conjunction with each other to help the doctor predict which conditions (such as dehydration) may be causing the decreased kidney function. Sydney's potassium levels are significantly low and this is another area of concern. She has been given a potassium bolus (a syringe full of potassium) and put back on the heart monitor. So what does all of this mean? We know for a fact that Sydney's kidneys have taken a beating from the chemo. We know they have decreased function because of this. This is fairly typical for kids in stem cell transplant. It can be a direct result of her chemotherapy and just a sign that her kidneys are having to work a little harder. Her kidneys may return to normal in an hour, a day, a week, a month, or never. The key is that we do not know if this is a blip or a sign of acute kidney failure. This is where you have to pray real hard and hope your doctors know what they are doing. Most kids do this. Most kids return to normal and do not progress into kidney failure. I still do not like it. Once again I have insider information and I am praying real hard. Thank goodness I saved some prayers. I am also lucky that Chance and Monty had so many bad habits, as I have extra available to swear off when bargaining with God.

Sydney has definitely taken a blow. She continues to slow down although she is still showing signs of herself and I have seen her in worse condition. She is incredibly thirsty and has developed a never ending routine of drink water, puke, drink water, puke, etc., etc. We continue to make her walk the halls and play games and stretch. She usually argues at first but seems to tolerate and enjoy our little adventures once we get her going. She is still talkative and most importantly she knows Mommy and Daddy love her. She also knows that she is sick but understands that she is in the right place. She knows that everyone here will take care of her and she will get better. She has a lot of confidence in her parents, her nurses, and her doctors. We treat her normally and she assumes that all of this is a temporary condition and just a bump in the road. For this I am thankful. I shall continue to carry the mental burdens for I am SuperDad. I continue to look for the antidote to NB kryptonite and continue to have a purpose more than ever.

Well today is a mixed bag of nuts and I am not talking about the Dungan family but rather Sydney's condition. The good news is that Sydney's creatinine and BUN are back to normal levels. This is truly a testament to the power of prayer, blood chants, and the renal dance. I am really quite shocked at the results. I anticipated Sydney's creatinine and BUN levels to remain about the same, either increasing or decreasing in small amounts. I never could have imagined that they would go back to normal so quickly. This is a sign that the cause was dehydration, a direct result of the Mannitol and Lasix used to manage the fluid retention that we saw after the stem cell transplant. The goal is to keep the kids a little dry (vascularly) to keep fluid off the lungs so it really isn't that big of a deal in reality. However, it was scary because of the symptomatic similarities with acute kidney failure.

Sydney's potassium continues to be off even after significant potassium supplementation. Although this is potentially scary I am not particularly worried. With all of the things that have transpired over the last few days I am not surprised that her electrolytes are slightly out of whack. The potassium could also be a late effect of the dehydration and as we slowly bring the levels back up we will see her sodium start to normalize. It is a game of measures. Nurse Kendra (the Mouthcare Nazi) was just in to draw another lab to check her potassium after the last bolus and hopefully we will know something by the time I finish this entry.

Sydney's mouth has deteriorated significantly and mucositus is now at our doorstep. She is in obvious pain and we are moving towards a fentanyl drip to manage the pain. This is another expected side effect and something that we can deal with. It is far better than many alternatives. Sydney has slowed down tremendously and it is a battle for her to do just about anything. I am so happy that we instilled the routine of running down the hall to touch the mats. At first she was very happy to take the walk and get the exercise. She would frolic happily through the bone marrow unit giggling and laughing as we passed each nurse and doctor along the way. Now it is a bit of a different story. She now wears a scowl and stamps down the hall to touch the stupid mat giving everyone a dirty look as she passes by. Mean little twerp. God love her.

Last night Sydney was pretty uncomfortable and on several occasions either Lynley or I ended up in the crib with her to comfort her. In the wee hours of the morning I grabbed my blanket and crawled in the crib with her to rub her back and cuddle her back to comfort. The next thing I knew I had fallen fast asleep until, WHAM, the back of her hand came across my nose. I startled awake to hear her say "Daddy wake up, No snoring!!" She rolled over and drifted back to sleep. I took this as a sign that she was feeling better and I crept out of the crib and back to my bed giggling all the way. I love the ornery little twerp.

Well, that is about it in a nutshell (It is ironic that I refer to my thoughts that way isn't it.). SuperDad survived acute mental failure but what will the rest of today bring. Will SuperDad keep from snoring? Will he develop a super chant to conquer mucositus? Only time will tell. Stay tuned for the next episode. We have a purpose.

Yesterday was pretty much the day of "No"s. Sydney do you want to do mouth care? - No!!! Sydney it is time to change you diaper. No!!! Sydney do you want to go for a walk? - No!!! Sydney, do you want to get in Mommy's bed - No!!! You would think this would foil us but we, as parents, of evil Sydney are prepared. It really becomes a game with Lynley and I to get her to do what we need her to do for her own good. Sometimes we try negatives like: Sydney do you not want to have your diaper changed? and at even more critical times we can ask: Do you not not want to not have your diaper changed? Many times this becomes frustrating for her as we massage the answer that we want to get out of her so it isn't all that effective for her but it is greatly effective at maintaining some sense of parental sanity. Lynley and I find comfort in getting her to at least unwittingly agree to do what we need her to do. Quite honestly the most effective way to get her to do something is to just start doing it and telling her while it is happening, although she does not seem to like it any more or any less. She is a bitter, bitter apple and deservedly so. She would be content to just lie in her bed all day and be left alone. I don't blame her and I know that if I were in her situation I would be even less agreeable but we have to do what is in her best interest - like it or not. The trick is to maintain normalcy in our lives and keep the gravity of the situation light. If we focus on her pain or discomfort it is depressing. That emotion wears on you and you begin to wear it on your sleeve. Sydney senses those feelings so it is important that the feelings we show are of confidence, comfort, love and all of the warm feelings that she needs to get through this, whether she is appreciative of them or not. I expect this condition of pain and discomfort to last for at least another week so I am documenting this philosophy as I know it will get harder as we go on.

Sydney's labs came back normal this morning. Her BUN and creatinine are absolutely where the should be. The first question that came to my mind was: Okay, does this mean we are out of the woods for kidney, liver, or organ failure? Unfortunately, the answer was definitively, NO! Much of what will happen with her organs has not yet had time to occur. In the coming weeks she will have massive fluid shifts as her white cells come to life. It would not be uncommon for her liver to double in size. I am not yet familiar with the medical mechanics of this but I am at least aware of the likely occurrences. The point is that there continues to be a delicate road ahead and we should be thankful that she has weathered the storms of the past so well. It is disappointing because I would love to hear that the tough part is over for my baby girl but I am content to be by her side. I just won't ask if she wants me there. It goes to show you that you can have a purpose whether your purpose likes it or not.

This is perhaps one of those things that I never intended to write in my diary. But, here goes. When entering stem cell transplant I was fully prepared for most occurrences related to the chemo and rescue. I had done my research and was prepared for just about every event. Some things I researched to see if I could find a way to make it easier on Sydney but others I just accepted as the way things are. I accepted mucositus as the way things are. Sydney had experienced mucositus during her first round of induction chemo. It was not fun but it was certainly bearable. I accepted that it could be more severe this time around. I remembered early on in this journey nurses coming from Paul's room crying as his father had finished mouth care. He was a dedicated Dad who mustered all of his SuperDad-dom to perform this task of cleaning his son's mouth. I knew I would have to walk in his shoes and I accepted it. There is not a choice of not doing it. It is critical to keep the mouth clean to prevent infection. So, I was prepared and I knew the possibilities.

They call mucositus, "mouth sores" which is perhaps the most inaccurate description I think you could ever hear. It gives you the vision of some uncomfortable little blisters in the mouth. No, mucositus, at least Sydney's experience, is not that. It is more like the picture one would get in their mind of ripping the top layer of skin off from her teeth to her tooter. It is bloody and gruesome and extremely painful. I discovered this in earnest yesterday as I returned back to our room after lunch to find both Sydney and Lynley crying. The top layer of her tongue had peeled off. There was a small bucket next to them full of blood and mucous with two bloody foam toothettes (foam toothbrushes) floating in the mixture. Once I discovered this and had the chance to view her mouth I began to understand and truly empathize with both Lynley and Sydney. To be honest, I was mad that I had not been there. Up to that point it had not been nearly as bad. Yes, it was painful. Yes, it was sad. But, it certainly was not this. So, what is the point? Why write it here to be relived again?

This once again got my research juices flowing and I hit all of my usual spots. There are no guaranteed answers but there are some promising ideas. So, I offer this to the fathers that follow in my footsteps. We are a little late in the game to start some of these but I encourage you to look into them. It does not need to be like this! First, there is glutamine. Occasionally it is added to the TPN but research indicates that the powder form used in a mouth rinse is perhaps the best method of delivery. Many parents have used this chalky concoction and found it to be a life saver. There is significant research regarding its medicinal value and in retrospect I would have made a decent argument for its use. It needs to be started on Day 0 but I am going to make a plea for its use even now. Ice chips have also been found to be effective, far more effective than many other methods. There are also a slew of other preventative measures that can be taken that I was not aware of until now. These are preventative in nature but many can also be used to supplement the healing process. A lidocaine rinse has also been effective at reducing the pain associated with the mouth care. I asked for it yesterday and I am still waiting for it but I will let you know how it works. For the time being there are no easy answers but if you have the chance I would try at least one of these preventative measures. Dedicated routine mouth care with periodex and nystatin just aren't always enough and if it is possible I would certainly try something in addition. These shoes that we wear today are not ones you will like to wear. Good luck, we all have a purpose.

Yesterday was a better day but, once again, it is all relative. Sydney's mouth continues to worsen but I think we have found a happy place in regard to her care. We have increased her fentanyl dosage for the third day in a row but her pain management seems to finally be where it needs to be. The lidocaine or magic mouthwash has also been a lifesaver. Before I perform her mouth care I paint her Nuk (pacifier) with the solution and put it in her mouth for a few minutes. Once the solution has had a few minutes to settle in I then use the toothette to paint her mouth with the lidocaine mixture. She will cry a little but I believe it is more from the fear of pain than actual pain itself. After a few minutes I then swab her mouth with chlorexidine and nystatin. Although there is still blood and the process usually makes her throw up I believe it is more mental than anything else. Her emesis has also changed from a clear to a yellowy color. Late last night we received a packet of the glutamine powder from the pharmacy and we will try it first thing in the morning. Dr. Eames was actually fairly supportive of the use of this concoction. I say fairly supportive but what I mean is that she did not come right out and call me a voodoo worshiper. She said they have had several patients use it with some success. But I figure, hey, I talk to her blood cells, I perform creatinine chants, and I do a little BUN dance when it is needed so maybe I am a little on the weird side. But hey, if it works for Sydney and provides a little comic relief for all of us involved then it is well worth the effort.

Sydney's blood cultures have continued to come back negative. That is wonderful news although we are still deep in the forest. It will be at least another week before we even start to emerge from the trees. She continues to spike low grade fevers and she has been retaining fluids. We had a dose of Lasix yesterday and that seemed to help the situation. Again, the idea is to keep her on the dry side. Luckily, this time we did not see her Creatinine or BUN freak out.

Right now there aren't really any funny Sydney stories to tell. She has been better but she still prefers to lie down. She is becoming weaker and it is obvious to me that we need to keep a concerted effort of keeping her exercised. Unfortunately, we are not allowed to leave the room due to her fever so we are having to be creative when it comes to her exercise regimen. She hates it and whenever she is on her feet she emits a soft and steady whine. I feel sorry for her but in another since I think this would be a great feature to have on any healthy toddler. It is kind of like putting a bell around your cats neck or the loud beep you hear when a large truck is driving in reverse. It is handy and we always know where she is. I also liken it to a car engine. As she speeds up the whine turns to a higher pitch than as soon as she returns to a stop the whine, too, returns to idle. It is only when she is picked up off of the floor and placed in our arms that the noise subsides. I know it sounds like cruel and unusual punishment and I know it sounds like a rather sad and morbid perspective coming from a father but stem cell transplant is not fun. I find myself reaching for humor as facing any of this head on would likely be unbearable. No one wants to see their child in pain and no one wants to cause their child pain but unfortunately in this world there is little choice. It is what we must do and I find that insanity is once again a necessary evil in this all to sane environment. I can not imagine doing this with a straight face. I am both heavy and light hearted. I am both attentive and aloof. I am both serious and funny. I am a walking ying yang but my purpose remains clear.

By definition we have entered what is anticipated to be the worst part of transplant. Days are not judged by Sydney's level of discomfort but rather if she is in crisis or not. Currently, Sydney is well medicated and I believe she is not in any pain although she is uncomfortable. She is not at peace but, then again, I would not expect her to be. Currently we have no emergencies so I am guessing that on the stem cell transplant barometer we would have to rate this as a good day. We have been battling the never ending fever. Her blood cultures continue to come back negative so there are a myriad of reasons for the fever. It could be the mucositus. It could be her body fighting. It could be her marrow struggling back to life. No one really knows at this point so we just keep praying, we keep talking to her stem cells, and we keep acting like everything is normal.

Sydney is talking far less. Most of her communication is in the form of hand gestures and directed grunts. She has stopped swallowing and a thick mucusy drool flows continuously from her puffy purple lips. We are changing her gown about once an hour as she refuses to wear a bib. I guess we have to pick our battles. Last night was a difficult night for Sydney. She woke up about every hour in pain. I would give her a bolus of pain medication and in about five minutes she would pass back out. We had several episodes of throwing up and she was not particularly happy. It is getting more difficult by the hour to keep her comfortable. She is miserable but we are happy to say that she is not in crisis.

Overall I am tired as last night was fairly sleepless. Although my mental acuity and cognitive functions are definitely waning by purpose is stronger than ever. Here is hoping for a better day for my baby girl.

Well, things aren't any better. In fact, it is anticipated that everyday will get worse until until we reach engraftment mecca. Her temperatures have soared to over 40 degrees C (that is 104 - 105 F). She continues to bleed from her mouth and her lips have now cracked and she is bleeding from them as well. We still maintain routine mouth care which is quite a chore. She knows that it will hurt and puts up a significant fight. It usually takes one of us to hold her down while the other cleans her mouth. We are having to be a little more aggressive with the cleaning as we want to remove as much dead tissue as possible to promote healing. For Sydney, it is the anticipation that is the worst. We hurt for her but have come to realize that it operates under the "bandaid theory" i.e. rip it off fast. She sleeps uncomfortably much of the time but both Lynley and I stay very busy with her care. About the time we finish one thing it is time to start the next. When we get a break we all try to sleep and relax. As much as we would like to to leave her alone to sleep it is increasingly important to keep her moving, exercised, and well maintained. The days are much busier than I had anticipated.

It is painful to watch Sydney endure this but I have come to accept that she will not get better until her cells engraft. Can you believe this is normal? This is what these kids endure and Sydney has had a decent ride on this particular roller coaster. She hasn't had any of the surprises or severe medical conditions. In some sense she is the poster child for stem cell transplant. So, I will feel very lucky. With that I have decided a change in attitude is necessary. Instead of focusing on the sadness of her condition and the pain that Sydney and both Lynley and I have, I am going to change things up a little. I am going to decide that this is all good. I am going to accept that she is getting better instead of worse. I am going to be confident, reassuring, and strong. I am going to talk to her stem cells with a stern voice and let them know that I am not playing games. I think stem cells can smell fear - but no more. I am confident. I am assured. I am strong. I have a purpose damn it and I am not screwing around!!! It is time. (Rocky theme)

Yesterday was a better day for us all. Sydney finally broke her fever in the morning and was showing signs of improvement. Right now the improvement is more of a general feeling in the air but I am convinced that we are on the upswing. Sydney was feverless for about 5 hours. I take full responsibility for this as Lynley had to leave to deal with the death of one of our kitty cats. Georgy, who was actually a girl kitty, earned her little kitty wings. We do not know exactly what happened but, unfortunately, she has left us. In the mean time, I took care of Sydney. I feverishly cajoled her fever cells to stop producing heat. It was tiring but after hours of arguing with the little cells they finally caved in to my superior debating skills. Oddly enough, no one gave me credit for my hard work and dedication. They even went as far as to try and give me some uselessly medically sound and rational explanations for the reduction of the fever. What were they thinking? Later in the day she spiked a fever again and guess what? It occurred on my afternoon lunch break. Therefore, I had to enter into another tiring and long debate with her cells to get them back in line. After several hours they finally caved.

I have no absolute evidence but I believe Sydney's mucositus is improving. We switched to a new lip balm and her lips appear to look fairly normal. They are still puffy but they are no longer cracking. I have also noticed that she is much more tolerant of the mouthcare. She is still putting up a significant fight but we are able to do a good job of cleaning her mouth without much pain. I am able to swab areas of her mouth that were previously off limits. She is clearly in less pain even though we are being far more aggressive. Additionally, she is swallowing again. At first we thought it may have been the method that we were using to infuse meds orally but, now, it is clear that she is choosing to swallow. Her mouth also remains closed much of the time. She had not closed her mouth for several days and had previously allowed the mucous to pool in her mouth until it would leak out the corner of her mouth and down her chin. All of this, in my mind (yes, the one that believes in fever cells) points to improvement. Don't get me wrong we are not out of the woods with mucositus but we are seeing good signs.

The most important sign of her recovery is the loss of her less than sign. All of our previous white blood cell counts showed "<.1" which means less than 100 white blood cells. Today it shows ".1". I am still waiting on the portion of the lab that has the actual counts of white blood cells, segs, and bands but this is definitely an improvement. I was hoping (irrationally) for .3. My reasoning for the difference is due to the nose bleeds last night. Her platelets dropped rather quickly, as has become routine, and it took a while to get the transfusion going. My theory (which is another glimpse at my insanity) is that the other 200 white cells leaked out. I have several medically sound back up theories but they are not nearly as much fun.

The only hiccup that we have had throughout the night has been low oxygen levels in the blood. Sydney spent much of her night dodging the oxygen tube that was placed on her bed to "blow by" oxygen to increase her saturation rate. With out the oxygen support her saturation rate is in the low nineties and high eighties compared to the normal 100%. We have taken a chest x-ray this morning to rule out a problem in the lungs. Her chest sounds clear and we are hoping for a negative result.

It has occurred to me that over the past week or so I have been writing this diary more for both my own enjoyment/sanity and for the parents that will have to eventually walk this bridge when they come to it and less for Sydney. Today, I think that should be remedied. In many ways Sydney has become more an object of abuse and less of a strong little girl. The fact of the matter is that although I have talked about her medically and addressed the fact that she has had much pain and discomfort I feel that my words have not addressed her directly and what a strong, courageous, and loving little girl she is.

Your daddy is so proud. As I read the words that I have written over the past few days I cannot believe it is you. It isn't because you are better at this particular moment and I can't believe the difference but, rather ,it is because I have not captured who you have been. I feel like I missed something in my words. Although I have written about your struggle it seems as if you have been an object of the process instead of the bittersweet and courageous little girl you are and, most importantly, my adorable twerprincess. You should know that you have given me strength and you have let me ride this roller coaster with you. Somehow you sense me and when I was worried you had your way of telling me everything was going to be okay. Whether you were patting my arm, rubbing my shoulder, or just sitting by my side, you were always taking care of me. It does seem backwards, but you gave me strength which I hope I have been effective at giving back to you. I don't believe you have ever doubted that you would be okay. I have always let you know that I am right here by your side. I have always let you know that you would get better. I have been positive, firm, and caring even when I was not so sure on the inside. But somehow you were. You have always had this strength, this undeniable belief that everything would be okay. I would love to say that it is because your parents never gave you an indication that it could be any different, which we did, but I think there is something more to it. You have something very special and everyone can see it. I hope you learn to as well. I will, of course, always take credit for your good qualities, after all I am your daddy and a strange one at that. But in this particular instance this special gift is all yours. In this case the egg certainly came before the chicken. You are a strong, brave little girl and I can't wait to see you grow up. Thank you for being my rock. Thank you for being my strength. And thank you for being my baby girl.

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

Another day has arrived and today our labs show a WBC count of .2. I am still waiting on the diff. which will gives us greater insight into what is going on. Regardless, this is great news and, once again, medical proof that talking to the stem cells works. Boy, how I wish that were true, but since I take credit for everything else I might as well step up to the plate once again. It is not only talking to the stem cells that is important, I have found that singing helps too. Due to our lack of sleep and limited cognitive ability we have chosen to sing a family rendition of "Ten Little Stems Cells" in an effort to mobilize the little buggers. You can think of it as the "Rocky" theme for stem cells. We had tried other renditions such as singing "99 little stem cells in the bone marrow, 99 little stem cells, one sticks on, turns into white cell, 98 little stem cells in the bone marrow" but we found that it was too difficult in our altered state and in all actuality was not as motivating to Sydney's stem cells. Once again, insanity seems to be the key to surviving this reality and makes a scary situation much more bearable.

Sydney continues to show new signs of herself. This morning she has chosen to be far more talkative. She is drinking water and choosing to be more active. Her mucositus continues to cause pain and just after I had said such promising things about her "theoretical improvement" yesterday she lost the top layer of skin off of her tongue again. That is perhaps the most painful thing to watch as it usually comes off on the toothette that Lynley and I use to clean her mouth. I can only imagine the pain that she is enduring. Other than that snafu and some electrolyte and potassium imbalances she continues to improve. Our purpose lives on....

Sydney's WBC count is .4 today!! I know what you are thinking. Here he goes again. He will take credit for the increase because of his talking to the stem cells or because he sang to them again. But, no, even as those are obvious factors in Sydney's recovery, the momentous gains that we achieved today must have been due to my new stem cell dance. Ironically, it also rained outside later in the day. I have found that my stem cell dance closely resembles my rain dance and, therefore, I must have been sending out some rain mojo as well. Regardless, we are extremely excited to see Sydney bounce back so very quickly. We still have lots of healing ahead of us but it is thanks to all of the prayers and love that has made this battle so bearable and endurable for Sydney.

Her mucositus continues to be an issue and the pain is still evident. About 1 minute after performing her mouthcare she has started screaming in agony. The current belief is that either the lining of her stomach or esophagus has started to slough leaving newly exposed tissue. She is choosing not to spit out the chlorexidine and it is making its way down to her tummy, stinging all the way. We continue to give her boluses of Fentanyl in addition to her PCA but the pain coverage certainly is not total. We are hoping, for Sydney, that this trend subsides for her today. We had small battles yesterday. We are in a daily battle with potassium, several electrolytes and to a lesser extent her BUN. It appears that several of these inconsistencies are due to fluid shifts within her body.

Sydney continues to improve in my eyes but she spends much of her time asleep and yesterday she spent much of her time mad at Daddy. I think her attitude adjustment is due to the albuterol treatments (3 times per day to boost her oxygen saturation levels) and the addition of some particularly nasty antifungal medications. To be honest, I have also encouraged some of the behavior. She chooses not to exercise which is an integral part of recovery. So, I find myself taunting her. She clearly wants to sleep and I will get out her toys and put them just out of her reach and begin playing with them. This makes her angry and she will get up and bat the toys away from me. I place the toys in such a way as she has to use all of her muscles to get them away from me. I know it sounds cruel but if I give them to her and encourage her to play with them she will just hold them and fall back to sleep. It is actually pretty funny but I have been effective at keeping a straight face. She is such a bitter little snot but it is all for a good cause. I don't believe that the behaviors that both she and I share will be long term and I think it has been an excellent work out. Only time will tell but I am content, at this point, to be a bad daddy if it will make her better. I am a good daddy with a purpose - just don't let her know right now.

Upon reflection I am pretty sure that yesterday was a better day. Sydney experienced her first fever free day in as long as I can remember. This meant that we finally had the opportunity to get her back out into the hallway and on her mission to touch the mat. It took some cajoling and she was not the least bit happy about it but she made it all the way to the mat. She clearly had some leg pain (most likely bone pain from the GCSF) and she was emitting a steady moan but she made it. Once we got to the mat she even took the time to dig through the movie library to find a movie to bring back to the room. We were incredibly proud and as soon as she was ready Lynley scooped her up into her arms to take her back to the room. Perhaps today she will make it both there and back. Before we made it back to our luxurious suite Sydney spied a wagon. We were happy to see that she demanded a wagon ride before calling it a night. After about 10 minutes of rolling through the hall we convinced her it was time to go back into the room. She was not particularly pleased about that but we bartered and sure enough she came back in the room - in her wagon.

Sydney's WBC count is up to .9 today. Another huge jump for us and another significant sign of her improvement. Her mouth appears to be improving significantly and there is a general feeling in the air that we are recovering in leaps and bounds. I don't know that there is a definitive moment that I could pinpoint to say that this is when Sydney got better but she seems to have passed that point. It really is amazing. Looking back over the past few days there wasn't a single incident that gave us a clue that she was getting better. Problem areas in Sydney's life just stopped occurring. Electrolytes stopped being as far out of wack. Her temperature stopped vacillating from the extremes. The whines and cries became less frequent. The mouthcare became easier to perform. Her oxygen saturation rates stopped falling with such frequency. Her platelet dependency became less severe. The blood in her mucus became thinner and thinner. Her nausea became less violent and frequent. She was coughing far less. Her chest sounds less raspy. She stopped having tremors in her sleep. She slept more peacefully. She started talking again and, most importantly, she decided Daddy wasn't such a bad guy for playing with her toys. Like I said, I can't pick a specific instance but Sydney certainly appears to be on the upswing. Recovery is in the air.

Sydney continues to improve. She is still sleeping much of the time but it is clear that she is on the road to recovery. Today her WBC count is 1.4. She slept through the night for the first time in weeks and guess what?? That means that we did as well. Sydney still requires daily transfusion support and a slew of medications but her dependence upon much of them is waning. I imagine that they will start weaning her from the fentanyl today. We are still experiencing pain but the source is unclear. Perhaps a night of rest was what was needed.

There are flashes of our Sydney. She is not spunky by any means but we are starting to see her personality more and more. In fact, here is an example for the history books. Prior to some of Sydney's medications we are instructed to give her a premedication of Tylenol. This is a small syringe full of purple solution. During the worst days of mucositus anything that we gave her by mouth had about a fifty percent chance of coming back up. She became very hesitant to take anything and it was always a battle requiring the two of us to get her to take her medications. One of the tricks that she learned was to spit out her Tylenol and mouthcare. Although I clearly understand her motivation, it is more important that she gets her medications and performs her mouthcare. This is a battle that we have never given up on. Sydney always looses no matter how much she fights. I think we are better off today because of our dedication to making sure that she took every one of her meds and performed all of her mouthcares. I think Sydney also understands that we are going to perform these tasks whether she likes them or not and that they are to make her "all better". Anyway, yesterday afternoon as I was alone with Sydney it was time to give her a syringe of Tylenol. We debated for a few seconds and then I injected the solution into her mouth. She promptly spit it out. I told her in a very stern voice that she was a bad girl and that she knew she was not supposed to spit out her medicines. It was clear to me that she had spit it up out of spite rather than fear of it disrupting her tummy. I then went to the nurses station and asked for another syringe of the viscous purple concoction. Upon its arrival I explained to Sydney that she needed to take her medicine like a good girl. She did without incident. I praised her for being such a good little girl and she went back to playing with some toys in her crib. After about ten minutes of happily playing in her crib Lynley returned to the room. All of a sudden the water works started gushing. Sydney started wailing to Lynley. Sydney told her Mommy "Mommy, Daddy mean to Sydney!! - whimper - whimper - whimper Waaaah Daddy, bad Daddy!!" Lynley immediately knew what was up and both of us looked at each other trying to keep a straight face. Yes, our baby is back. What a wonderful purpose we have. This is much easier when you realize that these are just smaller battles in a much bigger war. One step at a time. One minute at a time. And remember to enjoy everything that you have at every moment.

Sydney's WBC count is 2.8 and she is continuing to improve. She still has pain which has become our biggest obstacle. At this point, I personally believe it is gas pain. It is my theory that Sydney's esophagus and tummy have begun to slough and she is having difficulty processing the tissue. This is being manifested in gas pain and diarrhea. Unfortunately, gas pain is not controlled very well by Fentanyl and could be the reason that we continue to see Sydney moan in pain. To me, it appears to occur prior to a bowel movement or the passing of gas. Today, we will manipulate some of her meds to try my theory out. Her BUN continues to be elevated at 27 and although this is above normal it is not necessarily cause for concern at this point. On all other fronts Sydney is showing signs of improvement. A return trip home prior to Christmas is looking more likely than not.

Sydney was in a bad mood for most of the day. Although there were moments of sweet snuggles much more of the time was spent with mean snottiness. She had absolutely no tolerance for most activities and chose to be a bitter apple. Honestly, I do not blame her a bit and I can only imagine how I would feel in her situation. I just want her to be happier. I am hoping to make that connection today that makes it "all better." Although it is good to see the ornery side of her, I am also anxious to see the sweet side again too. At least now, I know it will come back. I know she will live and I know we will go home. It is quite a different feeling from the beginning of transplant when there are so many scary unknowns. So, I am content to wait. I am content to be a good daddy or a bad daddy depending on what is required and I am just very thankful that I have the opportunity to be by her side. Thankfully waiting by her side - I have a purpose.

Another day has dawned and Sydney continues on her path to recovery. Today her WBC count is 3.5 and her ANC is consistently over 1500. Although she is still not in the normal range of WBC (5.5 - 15.5) and ANC (>2000) her recovery has been nothing short of incredible in my eyes. I think everyone is a bit surprised. Today she will receive her last dose of GCSF (basically, a WBC incentivizer) and we will start to see her counts level off. She continues to be extremely platelet dependent. She is requiring a transfusion of the "blood bondo" every day and I would like to see this change. I cannot imagine that we will go home with such a dependence but I could be wrong. Of course, this brings up several rational and irrational theories. I am wishing more and more that I had pursued a medical degree instead of an accounting and finance degree. I am not experiencing fear which is quite different than the beginning of this journey. I have an incredible thirst for knowledge. In some ways it is though I am outside of the box looking in. I can detach myself from the reality of the situation from a medical perspective. This is a nice addition to my psyche as I can make sense of so much more. It is another indication that knowledge is power. Regardless, today I will have several questions for Dr. Eames regarding Sydney's platelet dependence.

My other major task of today is to be a good daddy. Perhaps I will do it by being a bad daddy but, once again, I find myself in need of "Baby Wise - the Neuroblastoma Edition." Sydney continues to be angry and spiteful. I still do not blame her but I truly believe that she would be a happier kiddo if I could help her out of her funk. She continues to spit out meds out of spite and although I have found that being stern and clear has curbed the behavior it takes a considerable amount of patience on our part and it takes a while for Sydney to come to terms with her anger. I would like to reduce her fits of rage regarding her medications and make the connection that snaps her out of it. I don't know what the answer is but I will find it.

There have been several other examples of her spiteful behavior and signs that she is aware of her actions. For example: Yesterday the physical therapist came in to work with Sydney. This is a daily occurrence to ensure that Sydney continues to use her body and avoid losing muscle mass. Sydney was sitting on Mommy and Daddy's bed next to a giant 5 foot teddy bear that someone was nice enough to give Sydney. The bear has a large pair of mittens slung around his neck. The physical therapist was attempting to get Sydney to put blocks in the bears mittens. Sydney slid down on the bed into a sleeping position and disregarded all attempts to garner her participation. She feigned sleep. She feigned pain. And when all of that did not work she just lied there in complete defiance. Yes, I know, everyone is completely surprised that this is indeed my daughter. After about 15 minutes the therapist gave up and left the room vowing to try again on the next day. As soon as the door shut Sydney jumped to her knees, shuffled over to the bear, and began placing blocks in the bears mittens. I could not decide whether to laugh, to be encouraged, to be disappointed, or to be mad but, sure enough, my little twerp had made up her mind. I immediately ran out the door to grab the therapist and have her peak in the window. Yep, that was my little snot. How come I know my mom is reading this and thinking that this is some how deserved? Regardless, I think Sydney will be a happier little girl if I can get to the bottom of this behavior. So that is my goal - retraining my little twerp to be happy. I will find the solution. This certainly could not be hereditary:) I have a purpose!

It's alive!!! Sydney started talking in earnest. No longer are we hearing the muddled moans. Yesterday words started appearing again. Although the start of the day was much as the many days before by afternoon Sydney was starting to communicate again. She spent several hours sitting up playing with toys and during the many walks up and down the halls she was clearly out of distress. Her jaunts out to the play mat where filled more with youthful exuberance and less with the audible groans of the days before.

We made progress with mean Sydney throughout the day and it is clear that her anger is subsiding. She is still showing sporadic fits of rage but for the most part she is turning back into herself. Additionally, she is differentiating right from wrong. Last night as Sydney, Lynley, and I gathered on her crib it was once again time for her to take her medications. She told us that although she knew that the medicine would make her tummy feel better she was going to be a bad girl because she didn't like it. It was really interesting to watch her mind work. It was as if she was trying to rationalize it to herself but couldn't find decent justification. She knew it was for her own good. She knew she had to take it but she just could not bring herself to do it. This was a very different scene from the days before because she wasn't in a rage and she was communicating with us. This was something that we could deal with. After a few minutes of talking she took it with out incidence and we praised her with a multitude of hugs, kisses, and cheers. It was clear in my mind that she was happy with herself. She still did not like it but she was proud that she had made it over that particular hurdle. I am hoping that today she will be back to taking her own medications. She is improving.

Sydney's blood is continuing to play games with us. Today her WBC count fell to 2.9. It is strange that it fell today and not tomorrow. Yesterday was the last day of GCSF and it would have made more sense to see her counts to continue to rise. It is not necessarily problematic but it is yet another medical question in the back of my mind. Additionally, Sydney remains extremely platelet dependant. In fact, yesterday could have been called the day of the platelet wars. The doctors had decreased her platelet threshold back to 20,000 (down from 40,000) In the morning her platelet count was 29,000 which meant we would wait about 12 hours for another test and then almost assuredly a transfusion. Lynley's concern has been how quickly the counts fall from 40,000 to nearly nothing. Like clockwork in the early afternoon we were once again faced with a continual bloody nose and other signs of her need for platelets. Our discussion with doctors yesterday centered around the platelet issue. Our questions were: "Why let them get so low?" and "Why not maintain them at a higher level so that we can avoid the nose bleeds etc.?" I would like to say we got a satisfactory answer but we really didn't. I do not think that they were hiding the answer but I think we were just receiving the standard answers - all of which we already knew. Yes, the platelet issue will resolve. Yes, the platelets are the last cells to be made. I am not concerned that her platelets are still low. What I am concerned about is why we allow them to get so low. One of the answers we received was to reduce her exposure to blood products. I have been trying to make sense of this in my mind. What would the exposure difference be if we were transfusing at 40,000 instead of 20,000. Does Sydney's body at this point in time burn platelets more quickly at higher counts? When she starts to produce platelets will her body "level off" temporarily somewhere between 20,000 and 40,000? Perhaps, I have become too cavalier about blood product transfusions and the difference between getting an extra transfusion of platelets outweigh the risks of her daily nose bleeds. Perhaps the low platelet counts are somehow stimulating to the body to produce more. Those are the only reasons that I can see that would justify the argument. Otherwise, she would be receiving the same quantity each and everyday. Regardless, this is another reason I wish my initials ended with MD instead of starting with them. Today we will figure it out but until then I think everyone knows that we will continue to give them a hard time until we understand the mechanics of the choices that are being made. I even asked our nurse if 911 was a direct dial number from our room. Luckily we all have a really good relationship and they know where I am coming from. I have a purpose.

5.8!!! That is right. The little twerp tricked us, once again, and decided that she was tired of playing around with fledgling WBC counts. 5.8 is considered normal along with her ANC which is well over 3000. Yesterday she received her final dose of GCSF so we can expect to now see her counts level off. Over the past few days they have continued to wean her off of Fentanyl and she is now receiving less than half of the dose that she was requiring. I imagine that tomorrow she will be off the pain medication entirely. Sydney does continue to experience bouts of pain but we believe that they are a result of the gas generated from the waking of her bowels. The last two nights she has let out sporadic moans that seem to last until Mommy or Daddy crawl up into the crib with her. It is a moan that sounds like "eh - eh - eh - eh" and lasts for several minutes. It is usually followed by the passing of gas. The funny thing about it is that Sydney will stop moaning the minute Lynley or I get in the bed. This begs the questions of whether she is training us or whether there really is pain. I think the doctors, nurses, Lynley and I are all in agreement that there is some level of gas pain. It is enough to wake her from a sound sleep but it is small enough that she can be comforted by her parents. Another indication that the pain is real is that we can follow the pain with her heart rate. As she gets more uncomfortable we see her heart rate go from the 130s up to the 160s and, boom, the moaning starts. As soon as the gas is passed everything returns to normal. Mylicon appears to work well throughout the day but I believe its sporadic use throughout the night is allowing the disturbances to occur. It is an oral medication which requires us to wake her up to administer it so there is definitely a trade off. Each time the pain occurs we believe that it could be the last but we are continuing to be surprised.

Yesterday evening Sydney was disconnected from all of her medical apparati for about two hours. The goal was to give her some freedom, some unrestricted exercise, and hopefully an increased appetite. Although Sydney still chooses not to drink she did eat a little yesterday afternoon. She ate several goldfish (crackers, not real fish, she isn't allowed to eat real goldfish yet) and even a couple pieces of popcorn. Although she threw up later in the day it was quite exciting to see her appetite start to recover. To meet our goal of going home on Monday we will need to continue to see significant improvement in her thirst. Currently we are manipulating her TPN and medications to induce a hunger and thirst response. Perhaps today will be the day.

Sydney continues to improve emotionally. We are having fewer sporadic fits of anger and most are completely controllable with a little reasoning. We are offering her either/or choices such as: "Do you want to drink some apple juice or take your Mylicon?" Yes, the answer to both is still a resounding "No!!" but, she seems to understand and she takes her medication with much less of a battle. We continue to reward her good behavior and that is starting to be more effective again but, hey, she is two and a half years old. As far as Sydney is concerned, she is ready to go home. It is nice to spend so much time with Mommy and Daddy but she is anxious to go see her animals and play at home. This is really the first time we have seen her make the conscious decision of wanting to go home and it is really interesting to see her grow and mature.

As life has continued to revolve outside of these walls it still seems like time is standing still in our room on 3 South. I don't know whether my perspective has changed so greatly that I am no longer concerned with what is going on outside of this room or rather if it is just a condition of the isolation. I have become so comfortable with this environment I can't imagine life any other way. It brings back memories of Sydney's original diagnosis and how concerned I was that life would never be "normal" again. Now that I have come to accept this reality as the norm I feel the exact same way but my norm is the complete opposite. I guess it is a testament to not only Sydney's resilience but a parents as well. I have discovered three realities so far and I know another one is coming. First, there was normal parenthood and all of the trials and tribulations that is inherent in raising a child. It was life changing and I began to realize that there was a new level of happiness that was beyond anything that I had ever experienced. It was now more important to play with Sydney than to play golf three times per week. I was happier. The next stage of Daddyhood for me was diagnosis. The first month or so gave me an entirely new perspective on everything in life. I learned to appreciate all that I had and my priorities changed. I received another gift and although I wish it had not been cancer it made me a better person. I know it sounds odd and I know I have mentioned it before but I have had some of the happiest days in my life time during this period. All of a sudden what I had was far more valuable and the appreciation was even greater. I guess it goes along with the saying that you don't know what you have until you loose it. It did not take long to learn that lesson. The third stage and the one that I am currently living is more of a fog. I don't feel as much pain or worry. I have grown to accept where and what I am. I have accepted that my daughter has cancer and can talk about it without fear or sadness. I am comfortable in my skin. I still love more. I still appreciate more. But now, I have come to accept that this is who and what I am. I have gotten used to my new priorities and to our new lives. I have accepted them but now, as I get ready to enter a new stage of Sydney's care. I am curious as to what this new world will bring. Who will we become. As we reenter our lives again what will it feel like. It is hard to explain but it is a result of being away for what seems like so long. I feel like the old man that fell asleep for twenty years under the tree and then awoke to find a different world. Regardless, I don't fear the change. I have gotten used to the skin that I wear changing frequently. I guess I am getting ready to be noodleless for a while as well. There is still a long way to go but I have my purpose to keep me company.

It woke up at 5:45 AM. "Momma, wake up!!!" ..... "Momma?!?" .... "Come to Sydney's bed!" .... "Watch Sydney TV!" Lynley oozed out of bed and crawled up on to the crib. "Daddy?!?" .... "Daddy, wake up!!!" .... "Daddy come, Watch Sydney TV!" I stumbled to the crib with my eyes half open.

Getting to cuddle up, hold hands, and watch cartoons with Lynley and a talkative Sydney -- Priceless!!!

Well, I was bad and did not write in my diary yesterday. I guess it was because I did not need to. Sydney is back. We spent the day chasing her around, performing magic tricks, and singing to anyone that would listen. During the last couple of days she has had the opportunity to spend hours free of medications, noodles, and her pole. We got the opportunity to run up and down the halls and reek havoc on all of the nurses. Looking from the outside in you would never know that Sydney was a transplant patient. Yes, she is bald. She still requires both platelet and blood transfusions frequently but other than that she is back to being a normal two and a half year old.

This morning we have our official "break out" party. At 8:30 AM we will bust through the streamers which have already been hung across the doors at the end of the hall. Rumor has it that the food de jour will be Crispy Cream Donuts. It is somewhat bittersweet and although it feels like the end it is really just the close of a chapter in our book. There is still a long road. We have radiation in two weeks, quite possibly monoclonal antibodies in a little over a month, and six more months of low dose chemo but, in my mind, it very much feels like the end. I guess it is that this hurdle is so large compared to the many that we have or will come to pass that it seems like the end.

I am still a little concerned that I will wake up tomorrow morning at home and before my eyes have been totally opened I will have sleep walked to the third floor coffee machine at wonderful Cooks (codenamed Home also). I have grown so many close bonds with the many nurses and doctors it will be really strange not talking to them everyday. In just the short month that we have been in transplant it feels like my world has changed. I have an entirely new group of friends and family that have seen me at both my best and worst and it will be odd to not be with them. It is another testament to how wonderful of a place this can be. Our family did not just have medical caregivers, we had friends and family caring for us. I continue to be in complete awe of their work and so very thankful for what they do - not only for Sydney, but us as well. I owe them a debt of gratitude that I know there is know way I will ever be able to repay. I know it will be nice to go home but this place isn't so bad either and I will definitely miss all of those that I have become so close too. I think I would like a benign fever at some point just to see them.

It has been a long road but it has been better because of those that surround us. Thank you for aiding me in my purpose. Although my address will change today my purpose lives on. I got my Christmas present early.

We have now been home for a little over 24 hours and it feels so good. I can't really explain the feeling because it is like nothing that I have felt before. I expected it to be like every other time that we had been discharged but, for me, this time it was different. I am breathing easier and there is definitely a weight that is missing from my shoulders. It is funny, I know this isn't the end. I know that there are many trials and tribulations ahead yet I feel giddy and, at least temporarily, free. Perhaps tomorrow it will be another emotion but today I am relaxed for the first time in over half a year.

Sydney continues to improve both physically and emotionally. She tires easily and it is clear that she is battling a pretty severe case of separation anxiety. In fact, yesterday upon arriving back at the house it was time for her nap. Sydney was not the least bit happy about the prospect of sleeping alone in her room. It was important to Lynley and I to reintegrate her back in to our normal lives as quickly as possible. Even those with experience with this type of transition from transplant to the normal routines of life suggested that we return life back to normal very quickly. It is the normal routines that give them comfort. The problem was that I don't think anyone had this philosophical discussion with Sydney. As we left her in her crib and left her room she started wailing. At home we follow the fifteen minute rule. We give her that time to cry it out - so to speak. If she cries longer than that then we will go back in and check her diaper, etc. to make sure there isn't another issue. This has worked very well since her birth. Unfortunately, we did not get her fifteen minutes. Within about five minutes we heard continued screaming and then a large thunk. I raced back into her room to find that the escape artist had climbed (more like jumped) out of her crib. Let me just tell you that it scared the living daylights out of me but I am happy to say that even with low blood counts, questionable platelets (the body's blood bondo), and post transplant weakness she was just fine. She was mad - mad as hell - but fine. It took both mommy and daddy to calm her down but eventually she made it back to sleep. Trauma averted.

Sydney had a good afternoon and evening with the family and even had a visit by her great grandmother, Gammy. She snacked in small amounts but was just generally happy to be home. Last night was another battle of getting her to be comfortable in her own bed again. We were up several times throughout the night and Lynley spent several hours sleeping in her bedroom. Somehow at 5:00 AM this morning she ended up by my side in bed. She patted my hand and said "Daddy, wake up! Daddy!!" followed by "I love you!!" upon which she flopped over and fell back to sleep. Life is good!! It is busy and we are running to get back to normal but I am so thankful to have my purpose and have it at home.

Returning back to normal seems to be coming quickly. Although we spent half of our first day back at the clinic and the remainder emulating Santa Claus, Sydney seems to be improving very quickly. She slept all through the night without as much as a whimper. No gas pain. No fear. Just a happy little two year old resting peacefully throughout the night. Well, you see, I spoke to soon. My precious little sleeper just woke up wailing my name. Not a problem and nothing a dry diaper was not able to cure.

Although I continue to feel a weight has been lifted from my shoulders, there is a tremendous amount of catching up to do. I do not know what it was about transplant but it made life outside of our room disappear. In that world there were no bills, no office work, no shopping excursions. It truly was isolation. I did not notice it as much until we got home. Perhaps, it is because I did not pay attention to anything in the outside world or, perhaps, I did not want to face it but there is certainly a bustle in the air. Maybe it is just the Christmas spirit but I, too, am anxious. I have fifty million things that I should be doing but I will not do themtoday. I want to jump up and scream to the world. I want to tell them how thankful I am and how happy I am for Sydney. I want to dig deep into the trenches of the Christmas spirit not only for Sydney but for everyone else that is out there in our lives. I want to rebond with all of my friends and get my office back with full force. I want to get back into "Lunch for Life" as it is continuing to grow. There is just too much to do. It is surprising how much I have missed without even knowing it.

On a side note two days is far two few to fully get in the Christmas spirit. It is not that I am advocating the start of Christmas at Halloween like has become commonplace in the nation's malls but two days just isn't enough. In our spare time Lynley and I have been playing tag team shopping. We each get the sparse hour or two to jaunt out and get the gifts that we need too, but it just isn't enough. How do you show your appreciation to all of those that have surrounded you. We both feel the need to do something for all of those around us but we have come to realize that there is no way that we will be able to achieve it for Christmas. Perhaps our future freedoms from the chains of the inpatient hospital stays will give us the needed time to focus on repaying our debt of gratitude.

Regardless of all my ramblings about being busy it still remains that being home for Christmas with my family is more special this year more than ever before. I can't wait to see Sydney's eyes as she wakes up tomorrow morning. It will be nice to be a normal family having a normal Christmas. You never know what you have until you have lost it. Luckily, I keep my purpose close to my heart and I have no fear of losing it.

I had planned on updating my diary after we finished opening presents on Christmas Day. So, technically I still haven't finished or, I guess, saying Sydney hasn't finished would be technically correct. The great thing about two year olds is that they have not quite fully grasped the commercialization of Christmas. There is no doubt that Sydney had too many presents thanks to all of those that were so kind as to send gifts. She has mountains of toys. The funny thing is that she opens one at a time. She plays with it for about an hour and then if she hasn't been distracted by something else she will contemplate opening another. Sometimes she chooses to play with another toy and sometimes she chooses to open another Christmas gift. If you factor in nap times, meals, clinic visits, etc. I think she has only opened about twenty gifts so far. At this rate I am thinking that Christmas may be over sometime in the middle of January. To be perfectly honest it has been very nice but also extremely busy.

Since our return home we have spent two days in the oncology clinic receiving various blood products. She continues to be extremely platelet dependant requiring transfusions every other day. Other than that she is continuing to improve. She still requires nightly IV nutrition but her appetite is improving. I imagine that tomorrow could be our last night of TPN and lipids. She still is not eating enough to sustain herself but she is getting closer. Speaking of TPN and lipids, we did have one night that was particularly scary and unfortunately it was my fault. Friday night we hooked up her noodles in the normal fashion. We were a bit hurried as Sydney was tired and irritable but I am not making excuses. We went through our normal routines injecting all of her medications into the IV bag, programming the pumps, etc. What I did, however, was put the wrong noodles in the wrong pumps. What followed was the fact that her lipids were infused over three hours instead of the normal twelve. At about 11:00PM I awoke to a loud beep emitting from her room. I ran in and at first I thought that the pump was low on batteries. I fumbled around in the dark to change the batteries without waking her up but it did not solve the problem. What I then discovered was that the lipid line, which is normally white in color was running clear. As I traced the line up I discovered the mistake. The beep was from the fact that the lipids were finished. The had run dry and the pump was beeping because of air in the line. I was immediately filled with unimaginable guilt and fear. I shut off the pumps, clamped the lines, and called the on call nurse to explained the situation. Fortunately, my mistake was not life threatening but it would be difficult for her liver to process that volume. Linda, the on call nurse, reassured me that everything would be okay and told me that the good thing about my mistake was that it would never happen again. Boy is she right. I then followed that phone call with another to Dr. Eames who also reassured me that everything would be okay but she also suggested that I not make that mistake again. They were both extremely helpful at making me feel better and both explained that given Sydney's current condition the effects would be relatively benign. Regardless, I did not fall asleep until early morning. I am still feeling some level of guilt. Although I know it wasn't a horrible mistake it was enough to shock my system. I am working on getting over it but perhaps keeping a little of this feeling in me will keep me more alert and keep my eye on the ball. I still have a purpose I just have to remember not to rush it.

Sydney continues to open Christmas presents. I think this could be the never ending Christmas Holiday. It continues to crack me up but I fear that we will never finish at her rate of two presents per day. This morning we made another trip to the oncology clinic for a refill on platelets. Sydney's white count continues to be on the low side but, all in all, she is recovering as expected by the medical community. At this point in time we are receiving platelets twice per week and hemoglobin once every other week. As time passes we should see her little body start to stabilize. Her appetite continues to improve but we still have not reached the point of self sufficiency. Although she continues to eat more everyday the amounts are still miniscule. It is tough to figure out what is going on. Sydney is clever and knows how to manipulate us. Whenever she is propositioned to do something that she does not want to she complains about belly pain. We have seen this behavior frequently at the dinner table but we are starting to see it in other areas of her life and at times that seem suspect. It appears that her belly only bothers her when she wants something or when she doesn't want to eat. It is tricky as a parent to figure out the right course of action. Previously (before transplant or neuroblastoma for that matter) I would have been more inclined to be firm regarding her eating habits and her manners at the table. However, anorexia (she is actually classified this way medically) can be long term with many kids and has to be dealt with very carefully. Lynley and I have both spent a lot of time talking to counselors and medical staff to ensure that we are doing the best that we can to get Sydney's appetite back to normal. Unfortunately, there are not any absolute answers. There are a bunch of "don'ts" but there aren't a lot of " dos" that guarantee a quick recovery. We are following many of our old rules of conveniently keeping snacks around the house. The idea is to get her interested enough to take a bite as she passes by. Generally we don't ask her to eat but, rather, we give her the opportunity to eat frequently. This works and keeps her putting food in her mouth but, it certainly isn't a long term solution. We are also aware from past experience that it causes its own behavioral problems that we will have to deal with in the weeks to come. The fact of the matter is that it has worked in the past and we are prepared to deal with the upcoming fights at the dinner table. For right now we just want to keep giving her the choice and the opportunity. Hopefully, the days to come will bring more appetite and less IV nutrition. In the scheme of things we are dealing with small potatoes in the world of neuroblastoma. There are so many others out there fighting infections, fighting their disease, and fighting for their lives. Honestly, my thoughts are with many of them. We have it pretty easy right now and I pray everyday that things continue to go well for us. Knock on wood. We have a purpose.

Well here we are on the eve of a burgeoning new year. I am having trouble this year coming up with resolutions. Truth be known I swore off most of my bad habits so it has been difficult to come up with a really good resolution to stick to. I would like to resolve to cure neuroblastoma next year. I think that would be a great resolution, however, I know that that is a long shot in such short notice. As I make my list of things to accomplish over next year that one has to be at the top of my list. I have to find a way to continue to spurn more research. I have to make that connection to people that says this is important. I want to look back over next year and see that I have made a difference. I want to see that these kids lives are changing for the better. I want to know that the parents out there are more comforted throughout this journey and that their children are better off for it. I need to create change and I just haven't yet figured out how to do it. I still hold out that by achieving the goal of raising 10 million dollars for research that we could save hundreds and thousands of lives. This year I need to make that connection.

Also coming to a hospital near me is the birth of my new son. I resolve to be a good daddy. I have never been a daddy to a son before. I am still in disbelief that he will be here in two short months. With all that has transpired with Sydney time has just flown by. It is once again time to read up on new born parenting. At least this time around I am already prepared for the sleep deprivation. But, regardless, there is still much to do to prepare but I will be prepared with miniature football in one hand and a pacifier in the other.

This has been an introspective morning and my next resolution is by far the most important but, alas the creature is stirring and there is much to do this morning. We have an oncology clinic visit this morning and I need to have her labs drawn and delivered by 7:30 AM. I am still yet to shower, kiss my wife good morning, and tell her how much I love her so this is all I have time to write right now. Sydney is continuing to improve and although I know that we will be on TPN throughout this week she made real stabs at becoming self sufficient yesterday. We had a pleasant dinner and she sampled everything on her plate without incident. In fact, she was the last to finish eating. I can not remember the last time that occurred. Well I am off, my purpose is calling.

Sydney continues to make improvements. The sporadic bouts of pain have continued to subside. Although some of these pains were more behavioral in nature, we have continued to deal with pain in her tummy. Ever since we had surgery, Sydney has had pain associated with either eating, passing gas, or bowel movements. Over time most have subsided but we continue to have some sporadic pains which are clearly real. I know it sounds awful for a dad to say that his daughter has "fake" pains but it is true and obvious and it happens something like this. I say, "Sydney you need to pick up the books that you left on the floor." And, she replies in a sad, sweet voice "Daddy, Sydney has belly owies, cuddle me." Miraculously, if I pick her up the pain subsides immediately and within 15 seconds she is wanting to get down and go do whatever it was that she originally wanted to do before I asked her to pick up the books. I have actually tested this thoroughly and the minute I ask her to pick up those books, strangely enough, the pain comes back. So you be the judge, manipulative little twerp whom I love or books that produce pain from the mere thought of picking them up. Gotta love her!! Lynley and I have studied a lot on these behavioral issues and feel confident that we will work through them with Sydney. It takes a little patience and a lot of consistency.

Medically, Sydney is doing fairly well considering that she is a transplant patient. Her counts are starting to maintain themselves, albeit at low levels. Her body wants to maintain platelets at about 15,000 which is pretty low considering we usually transfuse at anything below 20,000. Sydney usually starts to bleed at about 12,000 and this situation can get really serious if they fall below 8,000 so we continually bite our nails. As a frame of reference, normal people maintain platelet levels between 150,000 and 450,000 and we were never allowed to start chemo until they reached 70,000. So what does all of this mean? It means Sydney is doing "as expected." It also means no bungee jumping, falling, or rough activities. Sydney's white blood counts have also settled in at low levels. Again, this is "as expected" and what will keep us in social isolation for several more weeks at least. Her white blood cell count has found its home between 2 and 3. Normal counts for these little infection fighters is somewhere between 5.5 and 15.5. On the hemoglobin front, she continues to need a transfusion every other week and is currently about a quart low. She is pale but we imagine that we will make it through the weekend before needing another transfusion.

I guess the third biggest barrier to Sydney's recovery is her appetite. I know this sounds like a broken record but she continues to eat more every day. What is more you ask? We count things in bites and everyday she has a bite or two more. Considering there are probably a hundred bites in any given normal day we still have a long way to go but the significant changes that we are seeing is in her attitude about eating. At first it was a battle. We did not want to force her to eat but instead give her the opportunity. In the beginning, even that opportunity made her mad. Today she will sit down at each meal for about 15 minutes without complaint. Additionally, she will snack in small amounts throughout the day. It is abundantly clear that her taste buds have changed and our biggest challenge is finding foods that she likes the taste of. She seems to like spicy foods and does not care much for sweet flavors. Unfortunately, spicy foods seem to cause more bowel discomfort so it is definitely a balance. Again, all in all, we are pretty lucky. These issues seem so relatively easy to deal with compared to many that we have faced over the last 7.5 months. If I was going to tell a parent what to expect after transplant it would be that the recovery process occurs much more slowly. I guess the easiest comparison would be this: After normal high dose chemo we would see changes daily when she started to improve. Those daily changes are now occurring over a week. It takes time but like everything else in this journey it becomes normal and we grow to accept new occurrences as the way things are.

On a separate note, I know I have been bad about updating my diary lately. It has not been that I don't have things to say, I have just been too consumed with everything else. I have been busy moving into a new office at work and I have spent my time at home relaxing with the family. It has been nice to step back and enjoy life without being consumed with neuroblastoma for a while. I have thought about normal things and I have done normal things. For a little while,b I just got to forget. I have had the opportunity to experience normal life and it has been wonderful. I guess it has also made me temporarily lazy. I am ready to get back on the horse again as there is much to do but the vacation was nice. I never thought that my fears would subside, even for a little while, and I guess it was a gift from Santa that allowed me to take a hiatus from this monster. It feels like I had been holding my breath for a long time and I finally got a chance to exhale. One of the things I have thought about a lot has been my New Years resolutions and what the next year will hold. As I reflect back I resolve not to forget what my daughter has taught me. This is the next year of our lives and my first full year with a purpose. I can't wait!!

Well today is the first real day back to work for both Lynley and I since the beginning of transplant. Although we have worked throughout this period it has been part time at best. There is only so much that you can do from a hospital room at the wonderful Cook Children's Medical Center Resort and Day Spa. This morning I will be taking Sydney to the oncology clinic for her twice weekly checkup. She is clearly low on both platelets and Hemoglobin but it will be interesting to see if they transfuse her. Since her body wants to maintain counts at below transfusion levels it is kind of like flipping a coin. I understand why they think she should not be transfused but there has to be a point at which it becomes necessary. I have this vision in my mind of the Michelin man and if they do not transfuse her I think I will have to make my point by duct taping pillows all over her body to protect her from falls. Luckily, this morning it is really cold outside so she will be fully padded with winter wear. Her little legs (which are fatter now) are covered in little bruises just from the regular toddler activity of the past few days. I would think that if she is not transfused that instead of counting the bruises I will be, instead, counting the spots that do not have bruises just for ease in keeping track of her progress. If she is transfused I imagine that we will be at the clinic well into the afternoon and quite possibly all day. In that case my first day back to life would technically start tomorrow.

Sydney made large improvements over the weekend and with the exception of her bruising appears to be back to her normal self. Thankfully, the stem cell transplant seemed to remove half of her kitty cat cells so now I am only receiving "meows" to about half of my questions. She is behaving better and is back to the loving, sneaky twerp that I have grown to love. Although there continue to be small flashes of outbursts they are what I would expect to be normal for a two and a half year old. She, once again, seems to be happy in her own skin. Her appetite remains suppressed but I believe that is due to her nightly TPN and lipid IV. I am hoping that today I am able to convince the doctors to take her off so that we can see whether her appetite returns, not to mention that we are all tired of the inconvenience. It is not the chemistry project required to mix up the concoctions but rather trying to navigate the pole around our two story house which is difficult. Our house is definitely not IV pole friendly. I think my blood pressure is about twice that of normal levels whenever she is hooked up. I am in constant terror that the lines are going to get caught and that I won't be fast enough to keep it from ripping the central line out of her chest. I would feel much better if the noodles went in her arm but knowing that it goes straight to her heart is certainly unnerving. When they first put the central line in over six months ago I thought I would get more comfortable with the thought but I never have and I can't wait until those little noodles come out.

Well it is, once again time to prepare for a clinic visit. There is much to do before 8:30AM. I have to get myself shaved and showered, wake Sydney up, disconnect her from her IVs, draw her labs, get her bathed and dressed, and loaded up for an exciting trip. Luckily, she still thinks that we go to the clinic to see the "fishies" and visit the playroom so, all in all, it will be a good day for Sydney. We have a purpose whether she thinks so or not.

I am not the least bit happy and I have gone beyond tired, but perhaps this isn't so bad in the big scheme of things. Sydney has decided that it is totally unacceptable for her to sleep in her room alone at any time. What this means is that Lynley or I have to be with her in her room at all times. The other piece of good news is that I am pretty sure she has no hearing loss. It is either that or she has developed a sixth sense of parental radar. From the time she falls asleep at night until the time she wakes up in the morning if one of us is not present she will wake up and scream for us to come and lie in the bed near her crib. She will also routinely wake up to check to see if we are there. About every hour or so she will call out "Mommy" or "Daddy" and if one of us is not there in the room she will enter into a fit of crying. In the past we have dealt with this problem after each of our hospital stays and it was actually very simple. Ooops!! I am not in the room. I will have to get back to this later......

The good news that I did not get the chance to say was that Sydney's last night of nutrition by IV was Monday night. We are hoping that by stopping the IV's her hunger will come back and she will start to sustain herself. The great news about this is that we can now actually try and curb the sleeping issues. In the past it had been relatively simple to get her back into the habit of sleeping alone when we got back from the hospital. We would simply kiss her good night and let her cry herself to sleep. This crying never lasted more than about ten minutes at its worst. The problem this time is that she was hooked to her IV pole. She would get so mad at the fact that we were not in the room that she would literally flip-flop around the crib. This behavior put her in jeopardy of pulling her lines out so we would stay with her to keep her calmed down. But now, today, we no longer have an IV pole and we can get back to parenting. I am happy to say that Lynley and I both slept comfortably in our own bed until about 3:30AM this morning before we heard Sydney crying for one of us to come. I slipped out of bed and went to check on her. Her diaper was dry but it was a little cold in her room so I tucked her in snuggly, kissed her good night and went back to our room. There were several cries but within about five minutes she was once again fast asleep. Our method seems to be working once again. It is so nice to be free from the pole. Now it becomes a race to keep her eating and drinking so that the dreaded pole will not have to come back.

Sydney did not receive any transfusions on Monday. Although she is about a quart low she seems to be sustaining herself. I did not know this before but at this point after transplant the transfusion thresholds are lowered for these kids. The reasoning for this is to reduce the transfusion related risks for the little fighters. As parents we forget that with each transfusion there are increased risks of rejection. I know that Sydney has had so many transfusions that I have become really cavalier about it. It has become second nature and does not seem as scary or foreign as it once did. I remember biting my nails for the first 15 minutes of each transfusion waiting for some sign of reaction. Regardless, although Sydney is currently maintaining platelet counts between 15,000 and 25,000 she will not be transfused unless she falls to around 10,000. Her hemoglobin is also on the low side at around 7.7 and it is quite possible that she will be transfused on Thursday but, quite frankly, I have given up on trying to predict when and if we will get a transfusion. I think the doctors just change the rules to keep us parents on our toes. How I wish I had gone to medical school.

Emotionally, Sydney is improving in leaps and bounds. Her tantrums are fewer and far between and what I would expect of a two and a half year old. She is loving and caring and, at times, even considerate. Her vocabulary continues to improve and we are hearing new words and phrases everyday. I look at her with awe. After everything that she has been through she continues to astound. I used to always say that these little warriors were resilient but I do not think that word is strong enough anymore. Just think about it. If you walked a moment in her shoes how would you feel? What would you think about life? Can you believe this little turkey has been fighting this monster for almost 8 months, almost a third of her life and, yet, she is as innocent, pure, and happy as she was on day one. I am amazed and she continues to inspire me. What an incredible purpose to have.

Yesterday was a strange day for Sydney. She has developed a rash on the front side just under her diaper line. To me it looks like about 30 little flea bites. It is contained in that one area and it is not providing her with any discomfort. It has both the doctors and us baffled at this time. It makes no sense that it could be bug bites of any sort. It could be an allergic reaction to something but the location is strange. We are using the same diapers and the same diaper cream. It fact it is located on the bottom of her abdomen and it is not in the area where diaper cream would be applied. It could be shingles (a somewhat common occurrence in post-transplant kids) but at this time it really does not look like it. For the time being we have been sent home and told to put 1% hydrocortisone cream on it. We did have a surprise visit to the clinic yesterday afternoon due to this and other reasons. Yesterday, Sydney was lethargic. She spent most of the morning lying on the couch. At noon she threw up her lunch and Lynley and I were becoming worried. She had no temperature and appeared normal, well a quart low on hemoglobin, but normal. It was decided that we would go into the clinic to have her checked out even though her appointment was today. As soon as we arrived she was isolated into a room. They do this to protect the other kids when someone presents with a rash of some sort. All of her preliminary tests came back fairly normal although she had dropped nearly two pounds in just two days. She does not appear dehydrated but it is clear that it could be an issue. Her blood results came back to show that both her white cells and platelets have continued to climb higher but that her hemoglobin was only 7.0, well below normal. It was decided that she would get a blood transfusion early this morning and fluids overnight. Sydney perked up over the evening and seemed to sleep comfortably throughout the night although Lynley and I were up several times fighting with the IV pump. I have decided that these pumps are evil and were put on this earth to wake up parents and annoy them. Luckily, Sydney sleeps right through the wretched little beeps. These pumps are perhaps, the beepy-est we have ever had. I imagine that Sydney will remain on fluids for the next few nights and I know the blood will help out tremendously. We are still at a dead end with the rash but we are not terribly concerned at this point. We are off for another fun-filled day at the clinic.

At times I feel so petty writing in my diary. I can't seem to coax the words out. In one sense I am so completely thankful for how well Sydney has faired throughout this journey and for the wealth of support that we have had throughout our battle. But in another sense I feel guilty. I know I shouldn't be but, never the less, I do. I have developed so many new friends since this nightmare began and I find it difficult to talk about many of Sydney's issues. Why? It is because so many of the families that I have become so close to out there in the world of neuroblastoma are having real problems. Although Sydney's battle is far from over, currently it does not feel like we are in the daily life or death grind of saving our child's life. I know it was two days ago that we stopped feeding her through IV and I know we spent yesterday in the clinic and I know we still have well over six months of chemo, radiation, and monoclonal antibodies to go. Perhaps, I have been tempered by experience. Perhaps, I can see light at the end of the tunnel. Perhaps, I have a false sense of security because of the strength that I gain through Sydney. But today, right now, Sydney does not seem to be fighting for her life, but rather, just experiencing it. It feels unnatural. Right now, there are hundreds, thousands of parents sitting in hospital rooms wondering if their child will make it through the night, the next day, or the next week and I sit here wondering how long Sydney will cry before she goes to sleep at night or if she is behaving correctly. I get the benefit of hugging her and cuddling her, laughing and playing with her - without imminent fear and it feels strange and almost unfair to all of the others out there.

I haven't spoken about it much as I have been consumed with our daily lives but, did you know that out of the 70 or so parents that are participating in "Lunch for Life" (and yes it lives on - What did you do for lunch today?) about 6 of them have lost their children to this monster since it began in October, even more have had children who have relapsed. And yet, here I sit talking about normal child rearing issues. I still study neuroblastoma everyday. I still think about it everyday. I still relive it everyday. But, yet again, I talk about parenting. Have I forgotten? No. But there must be more. I have a right to be thankful for the gift I have been given but there is still a larger battle out there. There are thousands of kids out there - right now- fighting for their lives. It is time for me to get back on the band wagon. It is time to make a difference for Sydney, for Roxie, for Brandon, for John, for Nick, for Carl, for Michaela, for Anthony, for Creighton, for Paul, for Payton, for Lance, for Justin, for Vinnie, for Jamie, for Jessica, for Joshua, for Jaret, for Jordan, for Carolyn, for Patrick, for Nicholas, for Savannah, for Courtney, for Kelly, for Kaitlyn, for Elizabeth, for Ryan, for Jackson, for Matthew, for Christopher, for Nathan, for Brady, for Whitney, for Sophia, for Shane, for Grace, for Nicklaus, for Paige, for Ashley, for Lorelei, for Christa, for Madison, for Josh, for Lina, for Cassandra, for Kaitlin, for Danny Boy, for Daniel, for Lauren, for Kate, for Jay, for Harrison, for Ryan, for Spencer, for Trevor, for Gabriella, for Toireasa, and for all the other real kids who are out there fighting or who have fought this monster. There is still much to do. This list kind of makes "parenting issues" seem less than important doesn't it? I have a purpose but I must practice what I preach.

Yesterday morning was spent in the clinic. It went fairly smoothly although it did include some tag team parenting. Lynley also had a doctors appointment to have some routine tests with Rice. Sydney's blood transfusion went well and as usual she enjoyed spending time in the playroom. She even got to participate in a sand art activity. By the end of the five hour stretch, however, she was ready to get home to sleep and was keeping everybody busy trying to keep her happy. They loaded up a Winnie the Pooh tape on the clinic televisions to keep her at bay. Luckily, shortly thereafter, her fill up was complete and we were once again on our way home from the clinic. Sydney's appetite has come back quickly over the last day or two. She is constantly hungry. I think that her stomach has shrunken. She eats extremely small portions but continues to eat much of the day. We are also supplementing her with nightly fluids to try and keep her fully hydrated. Currently we are giving her noodles a drink of about 500ml per night.

We also found out that the upcoming weeks are going to start becoming busy again. Hold on, wait, I thought we were busy. I am pretty sure both Lynley, Sydney, and I are but, none the less, there is much more to come in the next few weeks. Next week Sydney will be reevaluated. This means we will have several full days of MIBG scans, CT scans, bone marrow biopsies, EKGs, ECCOs, hearing tests, etc. This round of testing will quickly be followed by ten days of radiation and our official randomization into or out of the monoclonal antibody trial. The monoclonal antibody trial will mean another six months of hospitalization. It will be fairly similar to the time we spent there during our rounds of high dose induction chemo. If not, we will receive 6 months of oral chemo at home. If we are not randomized into the antibody trial it will mean it is time for some tough decisions. One of them being a trip to New York to receive a version of the antibodies that is offered at Sloan Kettering. That trial would include at least four months of treatment. That would mean that Sydney and I would have to travel to New York once a month for approximately a week or two at a shot. All of this while Lynley is giving birth to and caring for "Baby Rice." All in all, they are not great options but, it is what we must do. We have only got one first chance at keeping this monster from coming back and these are the best treatments available. I am going to try to not worry about this for a week or so. I imagine I will have plenty of time to think about it then. This certainly is a roller coaster ride isn't it? Thankfully, I am right beside my purpose and I will gladly do what is needed.

Hurry, buy stock now in Campbell's soup. Sydney, alone, could very well sustain the company from her consumption alone. Two days ago something snapped inside Sydney's brain that told her it was time to eat in earnest. She hasn't stopped. Well, that isn't entirely true, she does have to sleep, but, when she is awake, she is a nonstop eating machine. Sydney generally wakes up in the morning, looks lovingly into our eyes as we come in to give her kisses, change her diaper, and pick her up to bring her into our room. That, however, is the last moment of the day in which she is not eating. By the time we get to our bed to cuddle and allow her to wake up a little it has already started. It starts with the demand. "Momma, Daddy, go downstairs, lil' bit. Somethin' to eat!!!" In Sydnian this directly translates to: "Ooh sweet Mother and Father, please take me downstairs where I can be closer to the food." The "lil' bit" is her effort to convince us that it is somehow not that big of a deal to go downstairs as long as we do it just a little bit. After all, she is surely just going to have a small snack. Once we as parents break the barrier from our second story onto the floor level of our house and her little toesies hit the floor it has already began. In fact as I carry her downstairs her legs start running in mid air. It is much like the Bug's Bunny cartoons I grew up with. As I set her down there is a small skid and then off to the kitchen she goes. The 24 hour buffet has, once again, begun. At this point it is race to make the eggs, bacon, sausage and/or cereal before she has filled her arms with all of the things that she would like to eat which always include a can of chicken noodle soup, a bag of cheetos, a bag of marshmallows, a can of Easy cheese, and a popsicle. If we have been efficient as parental chefs we have begun to prepare the breakfast foods that we have chosen for her to eat by the time she starts to beckon "Momma, Daddy, chicken noodle soup, pease!!" While the food is cooking and after much arguing trying to get her to eat something other than the limited foods found on Sydney's food pyramid we egregiously give in and prepare the soup for her. Within minutes we walk back past the stairs and into the den where her table is waiting with her gourmet spread of soup and junk food. Lynley or I will then go to finish cooking the "real" breakfast foods so we can eat and to try to sneak them into the buffet that sits in front of her. Sydney will sit and eat for about an hour which gets us to 8:00 AM at best. Upon declaring an end to her food fest she will stand up walk around the stairs and into the bathroom to wash her hands. This is our opportunity to start carrying everything back to the kitchen to be cleaned up. After performing the washing function she will continue the circle around the stairway and make it back into the kitchen to help clean her plates. You would think that after all of this morning drama we have reached our first break. The break lasts from the time that we lift her off of the counter where we were washing dishes to the time that her already running legs hit the floor. We have now completed the Sydney "Circle of Eating" which also has the literal translation because this all happens in a circle surrounding the stairway. Unfortunately, once her feet hit the floor the words, once again, part her lips. "Momma, Daddy somethin' to eat." This "circle" of events will continue to occur on the hour until noon, at which point we will take her directly from the table to her bed to avoid any unnecessary snacking. Sydney will sleep for about an hour and a half at which the process will start once again and finally culminate at about 8:00 PM when her head hits the pillow. My purpose is hungry.

It is time for another trip to the clinic for Sydney. Today should be a routine visit. I am doubting that Sydney will be in need of any blood products. This will mark over two weeks of not needing a platelet transfusion. I expect that we will find her to be in good running order and the bulk of our conversations will probably revolve around our upcoming scans and radiation. Our first appointment with the doctor who will be performing Sydney's radiation treatments will be tomorrow morning. It is going to be a couple of very busy weeks for Sydney as she endures another round of tests. The good news is that she continues to love going to the clinic and the hospital. To be honest, this is her only real bout of socialization these days and it is an excellent opportunity to see other kids. I guess she feels much the same about these people as we do. They have become a part of our family. I am hoping that the only difficulty that we experience today is getting Sydney to stop eating long enough to get in the car to drive to the clinic. I figure that if we can make it there we can do just about anything. Luckily the clinic is jam packed with chicken noodle soup, crackers, and her clinic favorite, graham crackers. My purpose is still hungry.

Yesterday's clinic visit went pretty well. Sydney blood counts continue to rise on their own. Her platelets are now at about 38500 and her hemoglobin is at 10. Her white blood count remains low at about 2100 with her ANC at 1360 but this is still expected at this point. The good news is that she continues to improve and that her marrow is starting to play catch up.&nbs