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

Hello and welcome to my diary. I think I should probably offer a disclaimer to those of you who do not know me very well. I am irreverent, sometimes egotistical and most definitely sarcastic but ultimately I am a normal average human being. I have three purposes for this diary. First, this is therapeutic for me. It allows me to get out my feelings and deal with my own pain. As a result, I am better prepared to care for Sydney, to care for my wife and to care for my family. Secondly, as a parent of a child with cancer it is my hope that this may help other parents in the same situation. I know that I am searching for the “right” way to feel and I am beginning to understand that there is no such thing. For you other parents I hope you find some comfort in my words and feelings knowing that there is someone out there that feels the way you do. Lastly, this is my gift to Sydney on her eighteenth birthday.

I will write how I feel and what I think. It won’t be appropriate or polished and definitely not politically correct. I have no intention of swaying opinions or influencing people. It is my words and how I feel. It might make you happy. It might make you sad. Knowing me, it might even make you mad. But it will make me feel better and hopefully it will give me the strength to deal with my own pain.

At this point I really don’t want to discuss this diary. I don’t want to know that you are reading it. It is still a little too personal and close. So please do not talk to me about it but if it makes you feel better then I am glad.

Sydney just started her first round of chemo last night. It was both a blessing and a curse. I had guilt because I was putting this poison into her veins. I had joy because I knew we were finally doing something. After all of the tests and scans and pokes and prods we are finally doing something about it. We are taking control and we are fighting as hard as we can. This is the usual way I feel about everything related to Sydney’s sickness. I feel inspired that we have a plan. I feel motivated to learn more. Friends and family empower me. They keep me focused on doing something. (Whether they try to do it or not). This is the Mark that just about everyone sees and talks to. It is surprisingly easy to be this Mark, he is focused and accurate and numb. His office hours are apparently from about 9 AM to when I get in bed at night. I like that Mark – he has it together. The other Mark, the one in the late hours of the night and early hours of the morning, is pretty sensitive, panicky and fairly irrational. It is that Mark that I am writing this for.

It is a tough day and I feel like it is getting tougher. The positive side of me has been leading the way but the second guessing of Sydney’s condition will eventually take its toll. I can feel a bad day coming. You know the shallow breath that you take while you are crying. The one that seems to go down to your soul. I judge my reality by that breath and I have felt it many times today. I haven’t cried today but I have felt it coming.

Sydney has gone from whiny and bitchy but awake to whiny and asleep. I can’t make her comfortable. She likes it when I rub the back of her head and put my laptop in her crib. She doesn’t want any more than that no matter what I do. Kiss daddy, hug daddy, No kiss daddy, no hug daddy, go daddy, come daddy is a usual rendition. It is obvious that she is confused about her feelings and uncomfortable. On a lighter note her Mommy has been that way ever since I have known her. I have grown to love it. But Lyn doesn’t have cancer so it is not nearly as scary.

Everything that happens right now feels like a heart attack in the making. My heart feels like it has skipped many beats. Last night Sydney’s blood pressure shot up to about 160/80. It was scary and took a little while to come to terms with it. I didn’t have the information to make it make sense so it was frightening, even though Dr. Eames, Sydney’s Oncologist, had warned us. You see, Sydney's tumor is large - 3” by about 6”. It puts pressure around the renal artery and the left kidney. Apparently, because of the way blood pressure is regulated in the body it could be a sign that the tumor is taking control. So it is terrifying. However, as I learned from Dr. Eames, it was more likely the increased volume of the fluids in her blood stream that caused the blood pressure to go up. This is where the two Mark’s run into each other. Sensitive Mark freaks out because he is paranoid. Arrogant Mark then grabs a hold and starts researching to find answers. It is this combination that seems to be working. Knowledge becomes power and I begin to feel like I am in control again.

The nursing staff is great, however, I don’t want to bother them because I know they are busy. They are great nurses with an important job and the last thing I want to do is inhibit them from being able to care for any one of the other oncology patients on our floor. But I also have a greater fear for my daughters health so I try to watch to see when they aren’t as busy to deal with my many questions. They are always incredibly nice and informative and they seem to understand our feelings and our need for information. They are far more noble and understanding than I could have been before this. I regret not being more sensitive to others needs. I believe that I have been helpful and caring but I never understood how valuable it truly was to people in a position of need.

I often cover my fear and my wife's fears with humor. The nurses called Dr. Eames about Sydney's blood pressure. Although we were sure that she was more likely going to prognosticate that Sydney’s parents were paranoid schizophrenics who needed a strong dose of Phenobarbital, they were calm, cool and collected and took the time to educate us. I asked for the Phenobarbital anyway. We laughed and that made everyone feel better. So I guess I relearned 2 age old adages. One, humor heals and two, knowledge is truly power.

I have had a break and it is later in the day. Sydney is sleeping and I think she is comfortable for the first time today, although I stay close by just to watch her breathe. Dr. Eames stopped by to take a look at her and talk to us. She is very comforting. I guess you could say that she “exudes” comfort. I feel much more sure of our treatment plan when she is around. I guess you could say confident. Don’t get me wrong, I know Sydney does not have the odds in her favor now, but something about our doctors and their team gives me hope. No the word should be stronger than hope. I almost loose all doubt. I envision our success and nothing else. Dr. Eames thinks that Sydney is going pretty much as planned. We might even be able to detect the tumor shrinking by next week. We realize she will probably have a blood transfusion tomorrow or the next day but we feel pretty comfortable with that. We will do anything to make our baby better. We asked a couple of questions but it is late afternoon and you know which Mark is out. I am confident about our success.

Another of my best friends did perhaps one of the greatest things in the world for me today. Another friend, Todd Rainwater, found out yesterday that there is a conference for The National Children's Neuroblastoma Foundation (held once every 2 years) and it happens to be in Chicago this weekend. Monty, the snot, actually jumped on a plane to fly to Chicago to get information for us. Man, I guess I learned a new lesson in the value of true friendship. This example, however, is just one of the many things that people have done for us. Lynley’s friends at work have also done some incredible things that have brought us great comfort. But it is all overwhelming and surrealistic. I can tell you than I never wanted to be the person sitting where I am today but I am so thankful for the friends, family, and unknowns that have helped us bear this chaotic time. To be honest, I have done nice things for people in my life. Not necessarily great things but good things. I never realized the impact that even small gestures could make in such volume. The human condition is surprising.

Well, I am sitting next to Sydney on the bed. She is getting a blood transfusion. I think she is starting to perk up a little. I think she is comforted by daddy doing something normal like typing on a computer. Two friends came by yesterday both with their own problems, both with their own stories, and both with the same message that got me feeling stronger. For the time being strong Mark seems to be taking control.

Friend 1 - He is an old friend of Lynley's who lost his father to cancer in November. He was the first person I have talked to that not only understood my feelings but felt them with me. We talked about many subjects from God, to cancer, to isolation. But most importantly he shared something with me. Now, I am not a poem guy. Never felt 'em, never got em' until this one. I have asked him to send it to me so I could put it on the website. It can be found below. But, basically the words captured many of the feelings that someone going through a very public grief would have. It has to do with what is going on in ones head when asked "How are you doing today?" I will let your read it for yourself. But the answer for me is that it always depends on your perspective. To me, I felt like he was talking about the two Mark's.

How am I Doing?
(c) 2003 Terry Burnett

I guess it all a matter of perspective, or the person you might ask.
What time I choose to wake up today, and would I complete today's task.
Will I choose to start the day off right, by offering my devotions to God above?
Or will I choose to start the day off wrong, by hurting someone I love?

So please continue to pray for me,
As we continue to pray for those that we love.
Because you never know the difference it makes,
Or the Blessings that might come from above.
And if you ask me how I am doing,
And I respond that I'm doing well.
I might be living in heaven today,
Or I could be going through hell.

The words are going through my head, In my ears the melodies are ringing,
In my heart I can feel a joyous song, I just can't make my voice start singing.
At times I feel like a tin man in the rain, That can't move and is covered in rust.
I know with time I'll be myself again, because it is God in whom I place my trust.

So please continue to pray for me,
As we continue to pray for those that we love.
Because you never know the difference it makes,
Or the Blessings that might come from above.
And if you ask me how I am doing,
And I respond that I'm doing well.
I might be living in heaven today,
Or I could be going through hell.

I know the difference between right and wrong, I have learned it from my youth.
But some days emotion takes over, and all that is wrong becomes the terrible truth.
I want to be strong and free again, to make a difference and to others be light.
To leave behind this terrible darkness, and regain once again my sight.

So please continue to pray for me,
As we continue to pray for those that we love.
Because you never know the difference it makes,
Or the Blessings that might come from above.
And if you ask me how I am doing,
And I respond that I'm doing well.
I might be living in heaven today,
Or I could be going through hell.

Friend 2 - A very close personal friend whose child is here at Cook's as well. He had his child a couple of weeks ago now. His daughter had to go in for surgery and they have had their own set of issues. I remember the first days of Sydney's life and I can only imagine the stress and fear of their situation. Their daughter had a problem coming out of anesthesia and they spent most of the night in the surgery waiting room. There was another Mother crying in the bathroom. You might have seen it in the news but this mother lost her son who drowned a couple of days ago and her daughter was in surgery and not doing well. My friend and his wife stayed and comforted this mother. They provided a needed shoulder to cry on. I thought about this story and realized I am still sitting next to Sydney. I can kiss her forehead. I can give her hugs. I have hope. The grass is greener on my side. Funny, it is all perspective isn't it.

These two friends gave me a great gift and I thank them for it. They had the right lesson at the right time. I hope I can be that poignant and timely.

Funny Sydney stories - Sydney is bossy and I like that. She is a fighter. She is demanding. All good traits I think for someone fighting cancer. Under morphine last night, she would wake up, jump to her feet, yell "UP", lay down and go back to sleep. This happened very quickly, maybe 5 seconds. She did it several times and by the end of the night we were in stitches. The other thing she did was dream and talk in her sleep. She would tell her grandparents to "go away" she would tell them which seat to sit in, and the like. She was very serious. It was funny because she had spent most of the night not wanting to be touched. Which made us feel sad at the time. I was afraid that she was blaming us for her pain and in that sense she was not consolable. Today is much better though. The transfusion has brought our Sydney back. She loves her mommy and daddy again.

Sydney has been uncomfortable all afternoon and, once again, inconsolable. We had been trying to wean her from Morphine but that is apparently not the ticket. We gave her a dose of Morphine but this time it isn't working. She is letting out squeamish whines and she obviously can't get comfortable. She is telling me that she has a pain on the right side of her abdomen. But the tumor is on the other side. Is the pain really there or is it on the other side. It is yet another unknown. The nurse came in and a fever has rapidly appeared. 103.1 and I don't remember this side effect being on the list. Now she is throwing up. Wait a minute, that is good. I know that symptom can appear. But wait.....A sore has appeared under her bandage near her central venous catheter. Hold on, in changing the bandage we find another sore under the adhesive of the bandage. This is way to much bad to comprehend, to much bad for my little princess. I am scared.

We gave her some Tylenol about 20 minutes ago. Her fever is down to about 99.5. A couple of deep breaths and I feel better. Once again the nurses were calm and informative. My life felt like it was coming apart but the were very reassuring. In fact, our nurse tonight, Annabelle, was down right cheerful. They make me feel better. She explained that the fever sometime spikes at this point with the chemo. The blood counts are falling as the chemo is killing the cells. I feel like I have been run over by a truck. I am tired and I fear another sleepless night. I hope I can give Sydney some comfort.

I read what I wrote last night. Pretty panicky. I guess we know which Mark was there and is here today. Sydney slept pretty well last night but her blood pressure has shot up to 180/91. We are trying to figure out whether it is pain related. She is obviously uncomfortable. The bandage over her Central Venous Catheter (CVC) came off last night. We have wrapped it over her shoulder to keep it from pulling but now one of the lines is too short and it restricts her movement.

I feel incredibly anxious this morning and it has incapacitated me. I notice the small things. I just kind of watch things happen around me. I forget to do simple things that have always been quite normal for me. For example, the nurses will be coming in with a lot of equipment and I forget to help them with the door. Things that are going around me just don't register in my brain. In some ways I feel helpless. I am trying to help but at this point I think it might be better that I just get out of the way. I know these feelings will change soon but for now I am clueless.

I guess it is time to tell you why I know the other Mark will come back. One of the things that I have read that parents do in this situation is bargain with God. I have been guilty of this as well. For one of my bargains I asked for strength - the ability to care and comfort my family. There is a part of me way down deep that is still strong and when it counts I can still bring it to the surface. I can always be there and in control to support Sydney. I can smile and hug and give her the feeling that everything is OK regardless of the fact that she is in pain. She always knows that Daddy loves her and that it might be bad now but it will get better. For my wife, however, I have a mixed bag of results. I need her as a crutch sometimes but one of us always seems to be able to be strong for Sydney. I do my best to comfort my wife and appear strong as a rock but I also believe that she needs to know I have pain and fear. I am a human. I believe it makes her feel less isolated when she knows that someone else has the same feelings. I can't help her with everything but I can always be by her side.

Well at 6:00PM last night Sydney finished her first round of chemo. I felt like celebrating as they switched her IV bags to nutrition. Sydney perked up too. Although we continue to fight small battles like fever, blood pressure, and sores, it feels better that she is getting the nutrients she needs now. Sydney would play with me and then jabber and play some more. She is showing signs of herself. She is very demanding. There were only two side effects of this recovery - the Chinese jabber torture and the nuk nuk(pacifier) filter. Once Sydney started talking to us last night she never stopped. - She still hasn't. Not for a little while, not for a lotta while, not at all. I don't know whether she is sleeping, I don't know whether she is awake but I am damn sure she is talking. Every minute or so she spouts off. Yes all night long. Every minute, every hour. Now a good question is: "Well Mark, what is she talking about?" and here rests the second problem. Sydney has her nuk nuk in her mouth and has become quite accustomed to it. I think it is affecting her speech, either that or she truly is just jabbering in her sleep. Because of this, I am delirious. We started talking back to her and that has given us spurts of uncontrolled laughter. It was a miserable but funny night and if Sydney is at peace I will endure it forever.

Perhaps a little background will help. After the night before of Sydney's jabbering - the words turned to cries. She became very anxious and uncomfortable. For the next 24 hours we would battle sleep deprivation, anger, sadness, and finally in the 36th hour - actual sleep. We don't know what caused the problem but we have many ideas. We looked to see if it was pain or maybe an effect of the drugs or maybe even just pure stubbornness. (For all of us really.) But for every minute of June 29th my daughter cried or my daughter slept but never greater than a couple minutes each. Finally at 11:00PM my daughter fell asleep and made it through the night. (So did we.) I learned a lot yesterday and I will share it later but my daughter needs me now.

We were very confused yesterday and I think we gave every drug possible to Sydney trying to give her comfort. It is hard to figure out what the problems are because she can't or won't tell us. There is obvious discomfort. But where it is and how much there is is a mystery. And even when we know we have her medicated we still can't comfort her. She is out of her element. The schedules that we had come to live by are out the window. I wish I could read something to help but they just don't make "Baby wise, the neuroblastoma edition." So I think a lot of what we are going through is relearning simple parenting skills. We have to relearn many of the tricks that we used when she was just a baby. To a certain point, I think this is our fault. In trying to comfort Sydney we gave her everything, a privilege we did not provide at home. I think she realized something was different and that scared her. We are working to put the structure back in her life. It is difficult because of logistics but more so because we have to set boundaries for our little girl in the hospital. We have to be firm when we don't want to and at times harsh when we just want to hold her. This is the same battle all parents go through so in that sense it is not that different. The fact that we are doing it in hospital however is very different.

Well we have just spoken with the Dr. and as always she was very reassuring. We got some news that is another double edged sword. We were expecting to get out of the hospital this week but the doctor has said that we should be prepared for more. I have grown accustomed to the comfort of the hospital and staff. In many ways I am fearful of going home and being responsible for my daughter on my own. It is just like the feeling of taking a newborn home for the first time. However, going home sooner than later means that she is doing better and we can be surrounded by the love and comfort of our home. All in all, although we have had many rough points, the Dr. seems assured that things are progressing as they should. To me it is chaos and I am beginning to realize that life as we have known it is changing forever. I will not sleep another night in my life without the fear of this horrible disease. Earlier I was very concerned about structure for Sydney and as I have talked to more and more parents, nurses and others affected I now know that structure will only exist at certain times but mostly for Lynley and I. The structure that I can provide will be that she knows that she is always loved. I knew we would have ups and downs with Neuroblastoma. What I didn't realize was how close the ups and downs would be together. There is simply no time for the habit of structure to form. So consistency of my support and love will have to suffice for now. At this minute Sydney is comfortable and well. I will leave you now before it changes.

Some days are good, some days are bad, and some days are like today. Nothing good happened. Nothing bad happened. But my daughter still has cancer......

I woke up early this morning and couldn't get back to sleep. Syd slept pretty well but woke up with each of the pokes and prods last night. It turned out to be good for me. I got to run down to my park and reflect for a while. It is very strange living this new life and I try to keep check on my mental state whenever I have a chance to be alone. I haven't cried in several days and I am trying to figure out why. Not that I feel guilty, I just need to keep in touch with my senses. I guess I exist in a state of numbness with frequent spatterings of fear. I exist in the now. I concentrate on what is happening this second but not in the overall prognosis for Sydney. In some sense I have been lucky all my life. Generally speaking, I have been able to procrastinate feelings that don't bring me joy. Sometimes the pressure builds up and I implode, but most of the time I am able to analyze the pain, anger or sadness and discover that it isn't so bad and I find a solution. My mom always told me to think before I speak and although I am not great at this skill when it comes to my humor, I have always been pretty good at managing my feelings. I can be comfortably numb. Lynley calls it the "Scarlet Ohara Syndrome." So with that, I guess I will think about it tomorrow.

In the past few days I have not been concerned with Sydney's prognosis. It doesn't really appear to me that she is fighting for her life. I simply can not imagine, prognosticate, or fathom that anything could take my baby girl. I understand the seriousness of the situation on an analytical level. I can sit and discuss it for hours. But, it never hits my "emotional plane." I have no doubt that she will survive and grow and be happy -- forever. Although I cannot picture what life will be like when she is twenty or thirty, there is not even a part of me that doesn't think she will be there. My mind simply says "Sydney is sick, Sydney will get better. Life will go on." I am trying to come with terms with the two Mark's but right now I simply can't. I just don't understand and I can't grasp the answer. Is this some kind of protective mechanism that exists in my mind? Has God provided me with the strength that I asked for and this is what it feels like? Should I be scared? Should I be thankful? Like many other things in this strange new world there just aren't any answers...Conundrum.

Sydney's tumor feels softer, a possible indication of tumor shrinkage. Thank you for the prayers.

I have reread my diary many times today. I feel like I have missed so much. In this environment you live second to second and minute to minute. I have no concept of hours and days. Life ebbs and flows based on Sydney's condition which at this point still changes with the hands on the clock. Right now, I am capable of comprehending two times of the day; 12:00PM and 4:30 PM. These are the times that Chance (yep, that is his name) shows up everyday to whisk us off to a world that we once knew. It seems almost corny and odd. It would have to me had I never been who and where I am today. Nevertheless, for 30 minutes, two times a day, I get to escape and I get to laugh.

Living this way is not a long term solution. It is a condition. My fuse is becoming shorter. I do not understand how someone could do this alone and I am thankful I have my blushing bride beside me. It is tough and I am starting to realize that is time to focus on my wife and myself as well.

Today I left the hospital. It is the third time since we arrived. This time, however, it wasn't to run an errand. It was for me. My friend Monty picked me up to take me away. We talked about cancer and Sydney and Lynley, but for the first time outside of my cherished interludes with Chance, I talked about the news, our business and life. For one hour this afternoon I was me, Mark, a single human being. Now this may not seem like a lot, but in my reality it was everything. It brought back both peace and peace of mind. I regained my focus. I regained my mission. Most importantly, for those around me, I regained my fuse before I lost it..

Days like this are better for Sydney. "Better" is characterized by severe pain, diarrhea, nausea, high blood pressure and hours of standing by the crib and playing with her hair. All of this, however, is manageable and as I have said before it is all "perspective". On these days we have more time to focus on the other things that are important to us.

Today, it is my marriage. Lynley and I are well and I am thankful that we can share each others pain and anguish as parents. Unfortunately, I can not share her pain as a mother and likewise she can not share my pain as a father. Semantics, yes, but there are differences and without walking a mile in the other's shoes it is impossible to comprehend. For this reason, some hours we feel close together and others we seem far apart. We have been good for each other. We have not fought. And we have not disagreed. But the conditions in which we live, can, and have been known to, put great stress on a relationship and its future. So it is time, I think, to put this into "perspective":

This is not the time or place to renew our wedding vows but I think you should know....

I love you. More today than at anytime and at anyplace. I could not bear this alone and I have no intention of it. I will always love you, honor you, and cherish you. I will be here in sickness and in health. And I will be here till death do us part. I will be your rock when you need a solid foundation and I will be your blanket when you need to be surrounded with comfort, love, and warmth. I LOVE YOU.

I know we will face good and bad for the rest of our days but I will always be by your side. I am here for you when you need me and I will go away when you need your space. It sounds corny, but, you complete me and I will be there to complete you. I love you, honey, and I always will. I am here by your side.

Some days there are no deep emotional wanderings. Some days there is no sadness. I woke up this morning at 5:00AM exhilarated, ready for a new day. A little background may help. You see, Sydney smiled yesterday. It was hidden by her nuk nuk (pacifier) but I could see the corners of her mouth turn and the happiness in her eyes. This was the first time I had seen this since the chemo began. Yes, yesterday afternoon Mama, Dada, MiMi, Dee Dee and nurse Kim stood around Sydney's crib and sang "The Itsy Bitsy Spider" with Barney, the purple dinosaur. By the way, I have declared a moratorium on all Barney jokes for the foreseeable future. Like the Sydney of old, she pointed to each of us to ensure we were singing and would always participate and clap at the end. She was happy, pain free and for the first time in a long while, so were we. I am so excited that today could be the same. There are no guarantees but I simply can't help myself. So, today, I have no advice for parents of children with this horrible disease, I have no special story for Sydney on her eighteenth birthday, and I have no need to write in my diary to address my pain. It simply isn't there. What I have before me is a sense of peace, joy, and happiness, and I intend to spend every moment I have sharing it with Sydney and our friends and family. O' happy day. O' happy day.

As I do every morning, I reread my diary again today. With life moving by so quickly I look at my words and read them as if they were not mine. Simply put, you forget. Things just happen so quickly. It feels like I have lived several lifetimes in the last few weeks. So I thought it a good opportunity to focus on Sydney's life today because I know there will be more bad days in the weeks, months and years to come and I need to remember that it gets better.

Sydney's Condition - Currently Sydney is getting her platelets and is sleeping comfortably. She has been without noticeable pain for the last couple of days. It took a little while but we finally found the right combination of drugs to keep the pain at bay. She still sleeps a lot and it is nice to see her sleeping so comfortably. We still have regular diarrhea and nausea but both Sydney and us have become comfortable in dealing with those times. Those times occur every couple of hours, sometimes sooner, but we all just kind of hold each other through it, clean her up, and move on. The sores on her chest are only uncomfortable when we change her dressing. The entry point of her CVC (central venous catheter - it is located in the center of her chest, two lumens then extend about 12 inches from there. It makes me incredibly nervous still and it will be in place for the next 14 to 18 months) continues to get more and more inflamed, but we are not alarmed at this point. She is starting to develop sores on her tushy from the diarrhea but the "happy hinny", which is a hospital made tushy ointment, seems to help a lot. I realize that reading this as a parent with a newly diagnosed child might be scary but it all becomes very normal, very quickly. I remember my life before this horrible disease and all of this would be very alarming but it becomes really ordinary. Remember, knowledge is power.

Sydney's Opinion - When they tell you kids are resilient, it is true, although at the time you think they are just trying to make you feel better. Sydney knows that she has noodles coming out of her body (CVC) but doesn't really care. She has a pulse ox on her toe but as long as she has her slipper on (exactly one slipper, for some reason she thinks two slippers would be stupid.) she is happy. She knows that she gets the hug machine every once and a while and although she has leg pain from the GCSF (GCSF is growth factor, it helps her build white blood cells. I believe it creates a sensation in her legs that feel like "growing pains") she is more and more tolerant of it everyday. She realizes that she has to have her temperature taken regularly and is always prepared to listen for the "beep, beep". She has come to deal with her nausea very well. No crying. No discernable discomfort. She just throws up and goes on with her day. When Sydney says she wants to go home she means that she wants to go back to our room. So they were right. She is resilient. It just seems to become normal. Sometimes I wonder if she remembers or if she thinks that life was ever any different than this.

Sydney's Demeanor - As I said, she sleeps a lot. But when she is awake she is content. She smiles more and more every day. She has started talking again and although she is not speaking as well as she used to (probably because of her nuk nuk and mouth sores), she talks to us and herself all the time. She hums to music and even giggles at times. Her sense of humor is starting to appear again and we all think Sydney is funny. She plays with her Magna Doodle, her beach ball, and her barney song book mostly, but, as any child would, she will fiddle with just about anything. She is also starting to want to spend time with Mom and Dad on our makeshift couch. We talk about all kinds of things. We practice brushing our teeth and putting shoes on. It is all very normal even, to a certain extent, by our old standards. She tires more easily but I think I am just more comfortable with the whole situation because she seems to be at peace with her environment.

Life is strange, life is different, but with love and hope it really is all the same. Don't forget that Mark.

Looking at Sydney today it is likely that you would have no idea that she was sick. She is starting to show an interest in food again and today we are going to try walking again. For the most part she is as happy and opinionated as ever. Once again we are working on please and thank yous. Let me tell you, it is not easy getting a 2 year old to thank a nurse for caring for her. But she's doing it on occasion. I think it is an important lesson to learn. These issues certainly seem different than those that we were discussing last week, don't they. We realize we will go through this same process in another couple of weeks once her blood counts recover so we are trying to make life as normal as possible. We finally have the drug cocktails in a manageable state and most of the cries that we hear each day are those of a normal healthy 2 year old. We still deal with nausea and diarrhea but as we have said from the beginning in the grander scheme they really aren't that big of a deal. Every once in a while as we research and read the statistics, survival rates and mortality rates we are shocked back into reality. Although we have a recovering two year old that appears happy and well there is a long, dangerous road ahead. The parental newsgroups that we follow show much pain down the road and so it becomes more and more critical that we take advantage of what we have now. There is a lot of sadness out there, there is a lot of death but we must remind ourselves that there is a lot of success. People are surviving neuroblastoma everyday.

Last night was quite memorable for me. Sydney's hemoglobin was extremely low and she was white as a sheet. She slept most of the afternoon after a morning of playing and, yes, walking. She finally had another blood transfusion at about 10:30PM and fought fever and discomfort most of the night. Apparently, I was pretty tired because I only heard her once or twice and Lyn said she was up frequently last night. This morning her color has returned and she seems to be happier. She is pretty talkative and is playing in her crib. She rests a little and plays a little but after yesterday I am afraid to say that she is getting better. We just never know and that is the nature of neuroblastoma.

Last night was also special for another reason. Another family with neuroblastoma is here and they are going through the consolidation treatment and stem cell transplant. It was very nice to sit and talk with somebody that had already walked in our footsteps. We talked into the wee hours of the night and I learned a tremendous amount. The most important thing I learned was that there were constants. Actually one constant and that is - change. You see neuroblastoma isn't like many of the other cancers. No one knows what causes it and no one knows how to cure it. Some people make it through the induction treatments and surgery in flying colors only to relapse mid-treatment. Some kids live, others die. No one knows why. And that is what makes the disease so hard. There aren't any answers.

Sounds depressing doesn't it. Well it is and it isn't and that is why last night was so important. I learned that I will change, I will become stronger. I learned that my life will never go back to the way it was but this new tangent is survivable and at times very happy. It will stress my marriage, it will stress my family, it will stress my friends and, of course, it will stress Sydney. But life will go on and we will adapt. Although it is scary now most of our current worries will dissolve and we will change. Hope, love and prayer will get us through. There will be good and there will be bad, but we can make it through. It is our choice.

There is much more to this story and, hopefully, I will have time in the coming days to share all of my revelations. For now it is Lynley's birthday and it is time to be with my family.

A new family was admitted over the weekend. It happens rather regularly but for some reason this family struck a nerve with me. From the initial meetings, to the first night in the hospital, to the visitations of the family and friends, and to the uncontrollable bouts with grief, I remember. When I see them sitting and talking to the doctors I can taste their horror. I don't know what their diagnosis or prognosis is but I can see their pain, anguish, and shock. It is almost eerie to see a family go through the process that we did just 2 weeks earlier. When you go through it you feel so scared and alone. But seeing it from this perspective is quite different. Now, when I watch a family go through the process I feel a kind of kindred spirit. I want to approach them and tell them that life will go on, that it will get better, that they are not alone. But I know better. At that point in my journey I wouldn't have believed it myself. People handle the shock and grief differently and you have to follow your own path. Even with Lynley and I, we are together but we have taken different paths to get where we are today. This is an important distinction and one of the reasons that I am so incredibly impressed with the people at this place. The nurses and doctors have been down this road many times. I think that they are not only experts at caring for the children but equally as adept at caring for the parents. They are patient, kind, and reassuring. They provide you hope and confidence that you will endure. This is possibly the best medication for a grieving parent and I don't recall it ever being provided in a medical journal. Sydney, Lynley, and I are all doing better today and I believe, in a large part, that it is the quality if care and the kindness of heart, that has gotten us through. I didn't make the distinction early on when I was being told by everyone that we were being cared for by the best. I assumed everyone meant that Sydney was being cared for by the most technically proficient doctors and nurses around. It gave me confidence. But now I realize that they are not only the best but the most caring for my family -- and that is what gives me peace. So when this new family looks at me I will show them confidence and strength, and when they ask, I will tell them what was told to me. And as the days go on I will pray that they find the path to their own peace.

Sydney continues to improve in small amounts. She sleeps frequently but she has brief intermissions of fervent play. When she sleeps we wish she would wake. When she wakes we wish she would sleep. She has absolute flashes of two-year oldishness and all that that suggests. Let me tell you, trying to chase a two-year old around a crib to make sure she is not pulling out her CVC and getting tangled in her "noodles" is quite stressful and a very scary side effect of her recovery. I know the crib isn't a large area but watching Sydney is quite a workout for all involved. The best way I can describe this process is as follows:

Imagine Sydney as the ball in a pinball machine. Now connect three strings to the ball at separate points. The good thing about this game is that you don't have to worry about the paddles. They are automatic. The trick is to keep the strings on the ball and to prevent them from getting tangled with each other or the bumpers. Like real pinball the ball will sometimes come to rest but only to be "hyper-flung" somewhere else. The game lasts about fifteen minutes and is followed by rest and relaxation only to start again at some random time in the near future.

We met another doctor on the oncology team yesterday. Dr. Howery will be caring for Sydney over the next week or so. He has a great bed side manner and Sydney has taken a liking to him very quickly. Now as the father of a daughter I would definitely say, an unhealthy liking. Upon meeting Dr. Howery, Sydney began giggling, playing peek-a-boo, blowing kisses, and flirting uncontrollably. I don't know exactly how I feel about this, but I am prepared to let it slide for now (given her condition and the fact that she had chosen "Dr. Handsome", a doctor, as her second love). I am still not happy about this side effect of the chemotherapy but I guess it is better than others.

This morning Lacinda, one of Sydney's favorite care nurses, has returned. Sydney was very happy to see her. Believe it or not, they both got their grooves on by dancing, singing and clapping for about 10 minutes. I really enjoy these times because, as of late, they have been few and far between. It is good to see her happy, although we are well prepared for the return of chemotherapy. I imagine the next few days will bring continued improvement (knock on wood) only to be followed by another ride on the emotional roller coaster, "The Chemotherapy Twister."

One of the questions that many people ask when faced with a crisis such is this is: "Why did this happen?". Now I don't know why, but I haven't asked myself this question and I guess it is time to face this demon. As it is, apparently, a "normal" stage of grief. I know Lynley has asked this question many times, but it has never occurred to me. Perhaps, "Scarlet Syndrome"? The "Why" question has just never made any sense to me and I guess it might be because of the way that I look at life. My father always told me that life wasn't fair and, I guess, I believe it. It isn't that I don't believe in God. It isn't that I don't believe that there is someone in the heavens guiding our destiny. I just learned, early on from dad, that life wasn't going to be fair. I have accepted that mantra since I was just a young pup. I believe I learned to deal with life's little hurdles when my dad passed away. Don't get me wrong, his death sent me into a loop for several years. But I finally got out of it by trying to use his strength, honesty, and courage to guide me through life. I came to learn that perhaps, through his death, I am a better person today than I could of been without that shock to my system. I owe much of who I am today to that experience. I guess the arrogance just leaked out, but I am happy with who I am. I understand my weaknesses and I understand my strengths and it is this gift that gives me comfort when times are bad. This may be naive, but I believe I know who and what I am. And all of this is due to the learning experience in dealing with the pain after my father passed away. It became much easier to deal with crisis as I got older because I always knew that something positive would come from every experience. So, I spend my time looking for the good, looking for that special nugget of information that I should learn. What can I gain from this experience? It just doesn't occur to me to look at life any other way. Now as Sydney lapses into the world of cancer, this is what I have been looking for. What is this experience going to bring Sydney, to my wife, to me, and to the world? Is it this experience that will inspire Sydney to become an Oncologist and discover the "Silver bullet" for neuroblastoma? Will this experience give her the strength to deal with some tougher battle years down the road? Will defeating this horrible disease give Lynley the true happiness she has been looking for? Will it change Lynley's perspective on life? Will her cup become half full? You know, I am lucky, this has already brought me a sense of compassion that I never realized I needed. I care more. I love more. And, most importantly, I appreciate what I have even more. We have a long road ahead and lots of learning to do. So for the time being, it really doesn't matter why this happened, but rather, what are we going to take from it.

For Sydney, yesterday was a good day. She laughed and played and played and played. For me, on the other hand it was a difficult day. I can't really describe it but something deep down inside was just not right. I was able to keep my head about myself when dealing with Sydney and my wife but others, at times, were not so lucky. Lynley and I have made a great team, both when times are good and when times are bad. We really have read each other well. We are extremely understanding of each others needs and of giving each other the time and space when and where we need it. Yesterday my wife gave me that gift several times. I just couldn't help it. Everything irritated me and I still don't know why.

I think, quite possibly, it could be that I just needed to vent. After behaving for so long and making sure everyone else was okay I forgot to think about myself. As Sydney gets better she is far more active and requires much more supervision. Hands on supervision. I know that this seems selfish and petty but it is very tiring. At this point in our journey we are trying to manage reentering our old world and our professions, digesting all of the research, searching for new answers to all the new occurrences, reports and test results, maintaining our relationships with others, maintaining our marriage, caring for an overactive Sydney that has become extremely more demanding( due to our relaxation of the rules during the tough times), and finally finding the time to care for ourselves. There simply isn't the time at this point. The stress of trying to do everything just keeps building and although our friends and family have been there to give us a release it just doesn't seem to be enough anymore. I want one hour to be by myself, to think, to release. But it just isn't there. There just aren't enough hours in the day.

Part of it, also, is that, amidst this chaos, we actually had developed a routine with Sydney, ourselves and our nurses. As Sydney improves that routine that I had been so comfortable with is no longer there. I can't "control" the situation or my daughter and it is frustrating. One of the great comforts we have is provided by the nursing staff but due to the fact that they have lives and days off, new nurses keep appearing. And so do the worries. Who are these nurses? Do they care as much as the ones that we have been so lucky to have this far? Are they as technically proficient? Do they have better methods than the ones that we have become accustomed to? Or are they recreating all of the mistakes we have made all over again? Now, logically, I know that they all care and that they are the best at what they do. But when it is your daughter it is really hard to fight back these fears. (It just occurred to me which Mark is out today, I guess I should probably reread my diary.)

Well, unfortunately I don't have the time right now, but I do have a lot to say. Thank you for letting me rant. But it is time to start the day and I think I have a lot of apologizing to do.

What is really strange about our world is the fact that there is no permanence. There really isn't anything that you can count on from one day to the next and some days it is one hour to the next. And now, as I read the words from just a few hours earlier they seem foreign. Am I developing another personality to go with the others? Maybe I really do need some Phenobarbital? Part of my recovery, I think, is due to my friends and, of course, Lynley. I am truly amazed at how well Lynley and I support each other. I always thought we were soul mates, but this experience really has shown me the power of our relationship and our understanding. All of these factors make it so much easier to get through the days. So in retrospect, I guess some things are permanent, there are things I can count on from hour to hour and day to day. So now, as strong Mark has returned, life appears much more manageable. My confidence has been restored. Thank you......

Sydney is doing spectacularly well and we even have a chance to go home on Monday (and back on Thursday for round 2). Today she is drinking and eating in small amounts. So, today is a day of celebration and it is time for a Sydney story. One thing that has been special about the relationship with my Sydney is the quiet times we are able to spend together. Before Sydney was sick we would have a moment every afternoon after her nap. I would get her a warm cup of milk and she would sit in my lap and we would cuddle. Sometimes we watched TV, sometimes we listened to music, sometimes we stared off in space, and sometimes we just looked at each other. But always, we were happy to be together. During this time we bonded, we shared, and we loved. It was a special moment that we had shared everyday of her life. Unfortunately, we had not spent that moment together since we arrived at the hospital and I feared that our new life would never afford us that opportunity again. But last night at 4:30 AM, Sydney woke up and called "Come daddy". I got out of my bed and went to sit next to her crib. She grabbed my arm and said "here daddy". She cuddled up next to me and hugged my arm. There we sat where we spent about 30 minutes together. She rubbed my arm and I played with her hair. Sometimes we talked, sometimes we smiled, sometimes we looked at each other and sometimes we just stared up in the air. We were together and for the first time in what seemed like forever we were sharing our special moment in our own special way just as we had done before. I call this our junior moment. You see a senior moment is when you forget what is going on around you, a junior moment with Sydney is when you simply don't care...

I am truly amazed with every hour that goes by. Sydney continues to improve. She is happier and healthier and more mobile than I can remember. Last night she jumped on her crib for about an hour straight. Up, down, up, down, up down. She is like the energizer bunny. I was starting to worry that she was overdosed on something because she was so incredibly active. It was just so nice to see, and in the same breath unbelievable. At this point in our journey, if you looked at Sydney, you would have no idea that she had cancer. Even though her hair is thinning she looks better today than she has in months. Even with all this good news there is always a lingering question. What does this mean? Well, this is a question I ask many times a day. Neuroblastoma is an extremely tricky cancer and it is impossible to "guestimate" the future. Sometimes kids respond throughout the treatments, some kids respond and then for some unknown reason just stop, and some kids never respond at all. Which begs the question - What will Sydney's story be? There is no answer but what we can do is hope and pray that the chemo continues to work, that she stays healthy, that her little body continues to weather the storm, and that progress continues. We can value ever minute and every second that we spend with Sydney and we can let her know that she is truly loved.

When researching this disease I learned very quickly that there weren't any absolutes, that there aren't any typical responses overall. You see, to date, there still isn't a cure for neuroblastoma. There are success stories, but long term (>10 years) survivors are few and far between. And that is the nature of the disease. For some reason it likes to come back and many times it comes back meaner than ever. So day by day, and week by week we hope that we continue to get the results that we have seen thus far. We continue to pray that the tumor shrinks and that her little body continues to fight. This will be the nightmare that we live with everyday. We will always be waiting for answers and assurances when none exist. It seems like a somewhat sad reality but I do remember. She is still real, she is still here. I can touch her, see her, and feel her and for that I am the luckiest man alive. So for the time being I will continue to pray for Sydney and I will remember that today, right now, this minute, she is surviving and she knows she is loved.

I know I should be excited but to be honest I have mixed emotions. The thought of going home has mostly just forced me to look over the past few weeks and ponder our past, present, and future. It has all moved so fast. I can barely remember our first night here and the days shortly thereafter are just a blur. I am trying to decide whether forgetting all of this is a good thing. On one hand, I don't want to forget a second of Sydney's life. In many ways, there have been times with Sydney, Lynley and I that were more special than any we have ever shared. On the other hand I would like to forget that this nightmare ever occurred. I am also starting to realize that I am one person instead of two or more. The line between the two marks is becoming less and less visible. I think part of this is due to the fact that I am starting to accept this new life as my reality. I think I am finally coming to terms with it. I never realized that a state of shock could last so long but I believe it has. Or maybe just both Marks had finally come to terms with it.

You probably noticed that I didn't write anything yesterday. That is due to the fact that the only thing I could think to write was "This disease sucks!" and, quite frankly, I could not see how that was going to help anyone. But this is when I started to realize the true nature of our new reality. I could no longer hide the facts from the other Mark. I spent most of the weekend studying the disease and researching through the ACOR news list in depth. This group is made up primarily of parents of neuroblastoma patients and doctors. Last week we had received some expected bad news about the biological characteristics, or histology, of the tumor itself. I spent my time looking for success stories of people that had the same or similar characteristics to Sydney's tumor. What protocols were they on? What problems did they discover? What did they learn along the way? I was trying to figure out who was having success and why. The problem that I ran into is that their weren't many success stories. I had a head on collision with reality. Talk about a smack in the face. It must have hit me so hard that both Mark's had to face the music. Now, don't get me wrong. I haven't lost hope. I haven't lost my belief in Sydney's success. I just discovered how hard the road is going to be.

WE ARE HOME. It feels so good to be home. Sydney ran around and played and actually ate for a change. She is truly happy to be home. She petted her doggies and kitties and smiled and ran and drove her car. I think she wore herself out in about 30 minutes. We put her down for her nap about thirty minutes ago. It took a while to get her to fall asleep in her own bed alone. She had not been alone in over three weeks. 15 minutes of screaming and happy gentle sleep. I know this belongs on the update page but I just didn't want to forget the exhilaration and normalcy of being home. Thank you God.

It is hard to believe that Sydney is sick. After Sydney's nap yesterday she played for about 4 hours straight. She did all of the things that she used do. She drove her car around the house. She played with her doggies and kitties. Most of the time, however, she spent running from one room and one toy to another. She has the attention span of a two year old. But, then I guess that makes sense. We noticed that she has gotten taller in the time she has been away. It is funny the things that you notice when you are away from home for a while, but we all noticed that we could now see her head over the counters as she was running around. Another new occurrence is Sydney's vocabulary. She has begun using many words that we have never heard before and completing sentences that are much more complex. For instance: Sydney woke up in the middle night and called out for me. I told her that daddy was sleeping and she should sleep to. Sydney said "Sydney no sleep, Sydney awake." It was the first time I had heard her use the word "awake" and I was woken up by my laughter and surprise. There must have been 15 other instances that occurred yesterday of Sydney using words and completing sentences that were brand new to us.

It is so amazing to see her like this and I am in complete disbelief that (a) she is doing so well after such high doses of chemo and (b) that she is sick at all. She is so full of life and happiness. I simply can't believe that this monster is alive inside of her. I love her so much. I just can't come to terms with her being anything else other than healthy and happy and, right now, I am not going to. I can face that music on Thursday.

Day 3 back at home has brought as much joy as the previous two but I can feel a certain uneasiness. I can remember when we brought Sydney home from the hospital after she was born. Being a first child we had no experience to draw on. What I am experiencing now feels much the same way, but now that we know that Sydney has cancer and even small deviations from the norm are enough to get the anxiety flowing. With the neuroblastoma still present in her legs, limping is a common occurrence, often attacking after Sydney has overextended herself. This brings back all the fears and unknowns. Is the cancer coming back? Is it getting worse? Is it spreading? Now I know the chemo is working. I know she is getting better. But currently there is just no way to keep the fears at bay. You know, it really is a strange thing, I can go from complete joy and comfort to complete fear in a matter of seconds. All it seems to take is a fall, or the fact that she is getting sleepy, or that she is acting differently. There are a 100 different things that can set me off. I assume as time goes on this feeling will subside, but right now it is a balancing act. All of these fears, however, are no match for the happiness I feel that she is at home and by my side. Seeing her smile, and giggle, and run far outweigh the smatterings of fear that we are faced with every hour. Once again, we are going to enjoy as much as we can for the next 24 hours before we go back to the world of neuroblastoma.

Well, we are back at beautiful Cook's. It has been a busy day of tests and doctor visits. We are getting ready for Syndey to start her second round. I know it sounds strange but this place kind of feels like home too. I missed our nurses and doctors. I should have time to write more later this afternoon.

I think everyone should know that there are good days. After our first full night of sleep since this ordeal began, I think we were all excited to start the day. Although Sydney cried when we first arrived at the doctors office (and whimpered "Home, Home"), I think we all had a good day and were far more accepting of our new life. It really is strange how normal this normal has become. You never really realize a change in your life but all of a sudden it has happened. I mourned for the loss of my old life but this life has become fairly comfortable as well. Things that were unimaginable just under a month ago have become reality and it isn't so bad. I, of course, am able to say this with Sydney both happy and healthy in appearance. I imagine I won't feel as down right joyful as this round of chemo starts to settle in, but I am comforted by the fact that the drugs are working and that our long term plan appears to be as solid as it can be given the circumstances.

It shocked me earlier today when I said that I missed the hospital and staff, but after thinking about it for awhile I really am glad to see them again. It is comforting because we are surrounded by people that can relate. Additionally ,they have become our friends and it is good to see them again. Not only are the good doctors and nurses but they are also down right nice people. I still don't believe I could find a better group of people to care for Sydney, my wife and I.

We have decided to make these hospital visits our little vacations. This time we asked for a room with an ocean side view next to the pool. We all dressed in our Hawaiian outfits (flowery shirts and leis) out showed up this afternoon at the hospital. Unfortunately, being in North Texas we don't have a decent ocean view and the nearest pool appears to be the puddles of water that have collected on the roof outside our window. But that is okay. It doesn't really matter. It all just exists in our minds anyway. ALOHA

It is much easier this time. Sydney seems to be doing very well minus a couple of hydration issues. The metallic smell on her skin (from the chemo) has returned. She is not particularly happy that she is getting woken up every hour or two but seems to be taking it in stride. With one exception, and that was while she having her labs drawn this morning. It was still better than before, her head only made three or four complete rotations. It is amazing how much more you notice what is going on around you this time around. With less worry, I am much more able to focus on what is happening to Sydney. Another thing I have noticed is the friendliness of the other parents on the floor. I think the first time you are here everyone is a little hesitant to approach you because they really don't know where you are in your stage of grief. However, once you have been here before there is much more camaraderie, or rather, sympathetic co-misery , with the other parents. I guess it doesn't take long to finish with your rookie season in the battle against cancer. I really can't explain how much more relaxed I am the second time around. I think it is probably related to the fact that now we have the knowledge that we didn't have the first time around. We know what to look for, we know our nurses, and to a certain extent we know what to expect. I guess "knowledge is power" as a daily mantra still holds true.

In talking to many friends and family about Sydney's condition, the nature of neuroblastoma, and what the future may hold it was suggested that I write my theories down on paper. Although this isn't an analysis of our well-being they are thoughts that consume my time as I search for answers to this ugly situation. So, I think, there could not be a better place to document my analytical thoughts that relate to Sydney's condition than this. I will denote actual facts by (FACT) and my theory's by (Markism).

First off, Sydney is doing well in this round of chemo. For the time being she is upbeat, happy, and playing, although not as mobile as the days prior to chemo. There have been many rumors regarding her tumor growth and they simply have no basis. Sydney has had what they a call a good clinical response to the first round of chemo (FACT). They know this from a physical exam (feeling her belly). Currently there is no discernable mass on the front of her abdomen, however an incision from her biopsy obstructs their feel to a certain extent. On her left side there is still a firmness but by no means is it as hard as before the treatments began. So based on this evidence we have every reason to believe that Sydney's tumor is shrinking. This is good news because the are certain "strains" of neuroblastoma that are chemo resistant (FACT). This finding provides us with a reason to celebrate her success so far and a determination to pray for her continued good response.

Now, Sydney's condition. Sydney has stage 4 neuroblastoma (NB). The histology, or biologic characteristics of her tumor are that she is n-Myc amplified, hyper diploid, shimada unfavorable, and she has a DNA index of 1.98. Great so what does all of this mean. As far as prognosis is concerned, not much. She still remains in what is considered the high risk group. The high risk group is pretty much applied to anyone over the age of one with stage 4 NB. The other characteristics really come into play with other stages of the disease to place kids in the appropriate risk groups. But, it is my belief that it has a lot to do with our battle. Most of my arguments are based on the fact that Sydney is n-Myc amplified, which is not good (FACT). Basically, in general terms, this characteristic represents how aggressive the tumor is. The amplification of this oncogene tells us that Sydney's NB is extremely aggressive (FACT). Her DNA index supports this finding. The hyper diploid characteristic of her tumor describes the actual structure and makeup of her neuroblastoma cells. If she were under 1 year of age this would be great, but this "trait" has not been nearly as predictive of tumors in children over that age. So my first theory, which is unfounded at this point, is that this characteristic supports and is predictive of her good clinical response to chemotherapy (Markism). Again, this has no basis in an actual study. This is my theory based on anecdotal evidence that I have compiled. So, to sum up the section on Sydney's condition, she has an aggressive form of stage 4 NB that may or may not have a favorable cell structure. We do know, however, that the tumor does not have an unfavorable cell structure.

Now, the nature of NB. We do not know why neuroblastoma forms or why it comes back. We do not know why when it comes back it usually goes to the neck and brain. We do not know why when it comes back it is more resistant. We do know that neuroblastoma cells are neuroblasts ( basically baby nerve cells, neural crest cells) that begin replicating before they reach maturity. In younger children(<1) many of these cells are known to spontaneously combust or turn into adult nerve cells. But for some unknown reason in children over 1 year of age they simply stay as neuroblastoma cells and replicate aggressively forming tumors and metastases. Chemotherapy has been shown to be effective at sending the cells to maturity where the die off and become cell waste (shown by higher levels of LDH in the blood) and others simply calcify and become part of the "non-malignant" ( this is a markification NB doesn't technically have a benign form) mass. Other things that we do know is that neuroblastoma cells are extremely complex with many differing biologic characteristics within the same mass and metastases, they are living organisms which are known to produce all kinds of chemicals throughout the body, and that they exist at many stages of their life cycle. These three characteristics of NB are what make it such an incredibly difficult disease to beat just once much less if it comes back. So we take from that, kill it all so it doesn't come back. Unfortunately, we still don't know why it comes back. We know that aggressive tumors are far more likely to come back (FACT). There is, again, no proven evidence to dictate how it comes back so now I will give you my theories based on anecdotal factoids.

(A) Some neuroblastoma cells are never killed by existing chemotherapies, surgical procedures, and radiation. These cells could be in different stages of the life cycle and are therefore not receptive to these agents. There could be resistant forms of the cells within a large group of nonresistant cells. The tests to find someone clinically NED (no evidence of disease) may not be accurate enough to find some forms of neuroblastoma. The popular term to describe these hidden cells is "lurkers." (B) The body may continue to produce, under produce, or overproduce an enzyme, hormone, or "thingy" which continues to produce NB cells. Maybe the mechanism that causes the production of the NB cells is sent into hibernation by the intensive chemotherapy regimens only to awaken at a later date once it has recovered. (C) Maybe all of the cells are killed but are reintroduced in small amounts by the stem cell rescue after the consolidation chemo in the third step. Since Sydney is in the non-purged arm of our trial this also is reason for concern with Sydney. Unfortunately nobody really knows if the test to check stem cell purity is effective in detecting all neuroblastoma cells.

Well enough theorizing. However, some interesting Markisms to note. Anecdotal evidence indicates that there are far more diagnosis' of NB during two times of the year (November - December) and (May-June). Additionally, hyper diploid tumors are more responsive to chemotherapy but do not necessarily have a prognostic impact on the 3 year event free survival (EFS).

The Future. I have always been very comfortable with the induction therapy (the rounds of chemo aimed at shocking the NB into submission and shrinkage prior to surgery). There has been an extreme amount of research on this chemo cocktail and it has been shown to be the most effective to date. By researching many trial results I found that this certainly appears to be the best method for induction for both short term and long term results. I have found that just about everyone uses this induction concoction and dosing is fairly standard. The next step following this is surgery. The success or failure of this is literally in the hands of your surgeon. I am happy to say that I believe Dr. Iglesias (Sydney's surgeon) to be of extraordinary talent and I am confident in his abilities regarding Sydney. Now, after those two steps, is where it becomes more difficult. This is where Sydney's n-Myc amplification is the basis for my need to find solutions outside the norm. Here are some more facts and Markisms. There are not many, as in very few, as in I can't find an example, as in nowhere, as in I have read over 200 clinical trials, looked at over 30 specific individuals, and studied and studied and studied; success stories of n-Myc amplified kids who survived without remission following the standard protocol. The point, after surgery, is where we start to see the protocol deviations, and we start to find success stories for children with Sydney's disease characteristics. Thus my desire to change things up. The third step is called consolidation chemo followed by stem cell rescue. This is akin to solving a roach problem in a building by bombing the building and rebuilding it. Someone once told me that this round was the equivalent of taking a child's system down to the point of that of a newborn and rebuilding it. Thus the question of purged versus non-purged stem cell rescue becomes important because you don't want to reintroduce the neuroblastoma into this system. Regardless, I believe in this method but not alone. There have been n-Myc successes based on what happens after consolidation. Many successes have been found with double and triple tandem consolidation chemo and stem cell rescues, although toxicities (bad side effects) occur in substantial amounts of kids and, unfortunately, many of their blood counts never recover in time to provide them alternatives upon recurrence. So, they have a lower rate of recurrence but a higher rate of mortality upon disease return. Another study that is being done with success is immunotherapy. Literally trying to train the body's immune system to attack the neuroblastoma cells. There are two interesting studies going on using monoclonal antibodies to train the body. Basically how they discovered this method was by injecting neuroblastoma cells into mice. The mice had a natural antibody to fight this disease so they made or modified (depending on study) versions of this antibody and stuck it in humans. It clearly appears to be as, or more, effective than the standard therapy to rid the body of residual disease and more effective in preventing its return. I have found success stories of kids using these therapies on tumors with Sydney's characteristics. On top of that I really like the theory behind immunotherapy -- getting the body to fight and protect against this disease. And because we do not know why this disease comes back or when it will wouldn't it be great if the body would attack and kill it before NB presented again. All of the other therapies generally center around killing the disease but this has the benefit of preventing it. To me, and to many, this is the future of NB.

Well now that we have looked at Sydney, her disease, and a glimpse of the future, I have depressed you, depressed you further, and then gave you a glimmer of hope. Over the next couple of days I will talk about our future plans and I will document these latter therapies in more depth and talk about what follows these stages.

Sydney has shocked everyone by fairing so well during this round of chemo. Although she is sleeping a lot more, we are seeing very few side effects during this round and, better yet, no pain thus far. When she is awake she is playful and talkative. So knock on wood. They have warned us of the likelihood of a return to the hospital, however. Fevers are a frequent occurrence and anything over 101.0 will bring us back.

Now, for a continuation of yesterday's discussion. Monoclonal Antibodies. As discussed yesterday, these treatments are considered an immunotherapy, in this case, they are curative in nature. This is an important note because most other therapies are aimed at killing what exists, not at keeping it from reappearing. They are basically mouse antibodies that fight neuroblastoma cells. The goal is to put them in people to train the human immune system to attack neuroblastoma. At this point in time there are two breeds, so to speak.

The first is the 3F8 antibody. This antibody is developed, produced, and administered through Memorial Sloan Kettering (MSK) in New York. This antibody is roughly 75% mouse and 25% human. 3F8 has been administered over 5000 times to over 200 patients. 3F8 has a good track record and has been shown to be really effective in maintaining clinical remission or getting patients with minimal residual disease to clinical remission. There are probably 30 to 40 clinical trials that have been performed using 3F8 and it is well documented. The latest information provided in a 2003 report shows about a 63% efficacy rate when dealing with patients in complete remission, very good partial remission, or partial remission. Yes, that number does look great doesn't it. Unfortunately, these studies don't stratify the patients by n-Myc amplification, but I know for a fact there have been successes. The study also identified some markers which were predictive of the antibody outcome. So, as we progress down the road we should be able to tell in advance how effective the treatment will be. Sydney would be eligible for a trial using the 3F8 if we jump ship from our current trial after her stem cell transplant. For more information from MSK click here.

The other antibody is the 1418. It is a human/mouse chimeric that is roughly 75% human and 25% mouse (yes, a flip flop). For this reason it is far less likely to be rejected by the human body. The rejection is called HAMA (Human Anti Mouse Antibody), however no one knows if it is a good or bad thing. In fact, they will not stop giving you the 3F8 until you develop HAMA. The 1418 antibody is offered as a COG trial (we are currently in a COG trial, the 3793 trial) and there is actually an arm of our current trial that will offer us the chance to receive this antibody. After Sydney's stem cell rescue and then following her radiation treatments there is basically a 50% chance that she could receive this antibody. It is based upon a flip of the coin. There are many reasons (lower antibody rejection, longer half life, human characteristics, lab results) why this antibody treatment should be more effective than the 3F8 but, unfortunately, there isn't much clinical evidence of its success . There are very promising lab results that can be found but nothing has been published as to the efficacy of this trial on living humans. Additionally, it is not currently available to anyone because of some toxicities due to dosing problems. I do, however, have anecdotal evidence. I have been in contact with the parents of the first six children to receive 1418. The parents are still very active in the neuroblastoma newsgroup that I follow. Some children have had great success without any recurrence of disease. Some have died due to either toxicity or, in the case of refractory and progressive disease, the disease itself. And this is important to note, Sydney continues to jump small and large hurdles. The fact that she has had a good clinical response bodes well for us. These little findings can generally put her on the good side of the percentages. So, a quick review of the 1418.... We have a chance of receiving it already and ,theoretically, it should be more effective than the 3F8, but it is not proven.

For us, which antibody we choose will be based on many factors but right now it will be which ever one we can get. If we have the option to choose we will, otherwise, it will most likely be the 3F8 and a trip to New York.

Antibodies are very tricky and there is a lot to learn. They appear to be the closest thing to a "silver bullet" available and appear to be the future of treating this disease. Many people have asked what Monty learned from the conference and the answer really lies in what I have shared with you thus far. There are a ton of different treatments that have different goals, different effects, and are available at different points in therapy. Thanks to Monty we have analyzed and prioritized some 20 different therapies to come up with our current position on what we believe is the best chance for Sydney's survival. We have also looked at anti-angiogenic drugs, MIBG therapy, Vaccine therapy, Arsenic Trioxide, Rebbecamycin, BSO/Melphalan, other chemotherapy concoctions, beta-glucan additives, radiation therapies and many others. As we go down the road we will discuss many of these, but I honestly I hope we do not have to.

Well, once again we are home. Sydney has responded so well to the chemo this time that we have been sent home. No blood transfusions, no platelet transfusions, no pain medication, no iv antibiotics, no tpn (iv nutrition), and no lipids. I imagine there will be some IV hydration, but for now she is great. We are watching for diarrhea, fever, and mouth sores but everything is really going well. Sydney is happy and she has slept through the night which, of course, has her parents worried. We go in to check on her intermittently while she is sleeping to make sure everything is okay. Both Lynley and I are excited to be home and I know I have said it many times before, but this really seems normal. I am still in shock that Sydney is not anything but a normal healthy little girl. She is playful and funny and energetic. It is almost like nothing ever happened, and deep down inside we all know this nasty disease is lurking inside her. Well, the turkey is stirring, so I must go.

Sydney is doing well. She is happy and playful but she still requires a fair amount of sleep. She stayed up until about 9:30 last night, which is very odd for her, and not by choice, but of necessity. Our home care nurse spent a little over 3 hours with us last night. Yes, we had the privilege of learning how to give Sydney her daily GCSF shot. We got to change her dressing and put her on IV fluids for the night. Sydney was not happy to say the least. She was tired and her mean old parents would not stop messing with her "noodles" and "stuff". I would have been pretty mad too with these two idiots (us, her parents) poking and prodding her all night. I am sure it will get much easier for us as we get a little practice. All of the screaming really doesn't bother me. At this point, I am pretty efficient at identifying when Sydney is in pain and when she is just plain mad. Mad screaming pretty much rolls off my shoulders. I do think we shocked the nurse with our level of comfort with the situation but these little incidences aren't that big of a deal in the big picture. Once we were finished with our torture session Sydney slept very comfortably through the night until the alarm on the IV went off at 6:30 this morning. Apparently there was air in the line. Sydney, once again, informed me that she would not go back to sleep. In Sydney's words: "Sydney no sleep, Sydney finished, Sydney awake!" She was very serious so the morning started a little earlier today. I imagine and hope we will have several naps today.

Now, on another note. A learning retrospective, if you will. Before this entire mess started, I remember being incredibly uncomfortable when talking to people that were going through a trauma. I remember the battle in my mind of trying to figure out what to say. Sometimes I would muddle a couple of encouraging words, sometimes I would practice the fine art of avoidance, sometimes I would just ignore the subject, and sometimes I would just say that I was sorry; but always, I felt stupid and I know I didn't make them feel any better. I was always uncomfortable and it showed on my face. I tried to figure this out at the time and I never came close to finding the answer. I don't think I was worried that they would burst out in tears and I didn't think it would open up into a thirty minute discussion that I was unprepared to handle. I just wanted to comfort them and without any experience in the area I was afraid of making them feel worse. I didn't know what to say and I didn't know how to make their pain go away. One of the benefits of having Sydney's experience to draw on is that I have finally figured it out. I actually have become anxious to use my new talent whenever and wherever I can. It feels great to bring people hope and comfort and it is really so easy. I think I learned the skill from talking to Paul Saxon's (the little boy who is 6 months ahead of Sydney in the NB treatment plan) father. I remember in talking to him that he exuded confidence, hope, and belief, much like our doctors and nurses. He never made any promises that Sydney would be cured, in fact, he didn't give me necessarily good news at all, yet he still instilled optimism and comfort in me. So what did he do and say, you ask. He looked at me with confidence. By looking in his eyes, I could tell that he empathized but I could also see that he believed. At that point in time things were bad for Sydney and he told me that it would get better at times and it would probably get worse at others, but I could always tell that he believed my family would get through it, that we would survive, and we would find happiness again. He was honest and he was also firm. I realize the reason he had this perspective and the correct words to use was because he and his family had been through exactly the same situation just a few months earlier. But, even though there are times when I don't have the exact same experience to draw on, I believe the same principles apply. Now, in life, when I come across someone in crisis, I show them that I am confident that they will make it through. I tell them that I hope and pray for the best and I will be there when they need me. Simply put, I show them that I believe in them. If they want to talk I will talk and if they want to be quiet I will do that as well. But most importantly, I will show them that I care, that I believe in their success and that I will give them my prayers. See, no magic, just simple common sense. I no longer have the fear that I had before. I no longer have trouble finding the words. I simply have to be a caring human being. I can't believe it took me that long in life to learn this simple lesson, but I guess I just never had the right perspective until now.

It is really amazing the things that you can become worried about. My most current worry is: Why is Sydney doing so well? I know I should just enjoy it, but I am in disbelief. We are now in day 3 following her second round of chemo. This last round of chemo included doxorubycin, vincristine, and cytoxin, the same drugs she had in the first round. Her appetite has continued to increase, she is almost at pre-cancer levels of eating. Yesterday, she woke up a little before 7:00AM, she took a nap between 12:00PM and 2:00PM and she went to bed at 8:00PM, exactly as she had done before she was diagnosed. She spent the remainder of the day running around the house, playing, painting, coloring, driving her car, laughing, giggling and screaming through the house just like she did before. She does not have any mouth sores, nausea, diarrhea or discernable pain. She is talkative and sneaky. And once again, I do not remember the lack of any of these side effects being mentioned in the chemo documentation. I had to reread my diary because I was pretty sure that these were all side effects that we have had before. Yes, with the same drugs, just 3 weeks before. Is Sydney this resilient? Was she dosed correctly? Why isn't she acting like she did after the first round of chemo? I know this sounds rather stupid. I know I should be thankful. I know I should just enjoy it while I have the opportunity. To a certain extent, I do, but I just don't understand it. On one hand, I am extremely happy to have my Sydney back, on the other, concerned. It just doesn't make any sense and it is another example of the strange worries a parent in this position has. I have found neuroblastoma to be a very strange roller coaster ride. You have to learn not to expect anything. I guess the fear that I really have is: When is the other shoe going to drop? I think I protect myself by not getting too happy or too sad at any given moment and have become accustomed to expecting the very worst, but hoping for the best. I think that has made this ordeal easier to swallow, but only time will tell. So today, once again, I am going to try and enjoy our good fortune but my subconscious will try harder not to forget that we are still in the battle of our lives.

Yesterday was a race from finish to end. Sydney slept fairly well but woke up with some frequency. Sydney woke up a little earlier than usual which was somewhat of a blessing. Before her 8:30 AM doctor's appointment we still had to disconnect her IV's, flush her lines, administer her meds, change her diaper, bath her, dress her, and the other "normal" things you have to do with a child in the morning. In fact, we even made time to have breakfast with some houseguests that were in town. The nurse practitioner gave her a basic check up and evaluated her blood results and we are happy to say that Sydney is doing well, although her blood work has not dropped off as quickly as expected. Because of her increased appetite and intake of fluids we are able to take her off of her nightly IV. She will go back on Monday for some more tests and most likely be hospitalized for the next three days for her stem cell collection.

Sydney has developed two side effects from her neuroblastoma. One is a severe dependence on mommy and daddy and the second is a rash of spoiled "bratedness". Because of our new altered schedule and the fact that my mother-in-law is staying with us I have had the "privilege" of watching Dr. Phil with Sydney in the afternoons. Now I won't admit this anywhere outside of the realm of this diary, but I actually kind of like the show. His advice makes sense. Again, I will not admit this outside of this diary. As I have mentioned before there really is no book on the market or resource on the web that tells you how to deal with a child with cancer. There are a few scattered writings but nothing at the level of what you see for healthy children and for this reason it is one of those things that you have to develop a solution on your own. So, I have found myself, over the last few days asking myself: What would Dr. Phil say? (Now, I know I might of mentioned this previously above, but I really will flat out deny that I watched Dr. Phil if I am ever confronted with it.) I know exactly what I would do with both of these issues if Sydney was a healthy toddler but I am torn as to what to do in this situation. I really don't have a problem being firm with Sydney, in fact, I think it is an important part of a parent-child relationship. But in this particular case, what are the risks. Will she feel alienated? Will she become worse? Or, will treating her like I would have before this make it all better? I just don't know. But I think that it is the only solution. I have to believe that she will be better prepared to handle what the next few years bring if she doesn't have separation anxiety. She will learn to get comfort from herself and from many of those that surround her. I believe that is what I would want for myself in this case. Dealing with the other problem doesn't really bring as much inner turmoil. The tricky part is figuring out why this behavior has developed. Is it because we have spoiled her or is it some reaction to the situation as a whole and this is how she is dealing with it. I believe firmness is the answer too. Letting her know that her parents are not accepting of her new behavior should be the answer, right? It should give her comfort that we are consistent, shouldn't it? As with everything in this new life there are many new questions without any new answers. We can only do our best and, so far, we are doing that everyday. Wish us luck.

Well, once again we have arrived at Cooks. Yesterday afternoon Sydney stopped eating and drinking as much. As the afternoon rolled on she appeared to become paler and paler. We decided to call the Oncology Doctor on call and, sure enough, it was decided that we should head back to the hospital for a transfusion and a quick check up. Within 20 minutes we were back at the hospital and ready to spend another luxurious night at the lovely Cooks Memorial Hotel and Cancer Spa. Once again, we did not receive a room next to the pool and I could not even get a glimpse of the ocean from our room, but, as always, the staff was there to greet us with a happy smile. As we drove to the hospital Sydney quickly regained her color and decided that once we got there it would surely be time to play. So, yes, we arrived with Sydney looking better than ever and running cheerfully up and down the hallways. I quickly called the "Mothers" as they had been at dinner with us to make sure that Lynley and I had not been delusional. They were in as much shock as we were that Sydney was feeling so well. I have come to the conclusion that Sydney is exactly like my Suburban. The air conditioner in it never works very well until I drive to the mechanic's garage. Then, as expected, it will start blowing frigid air. The interior of my suburban will drop 20 degrees just by parking in front of the garage. Anyway, Dr.Wilkinson checked Sydney over and it was decided that she would have a transfusion. She also noticed the start of some mouth sores. We are hoping to curtail their development as this will surely put us back in the hospital in the next couple of days. It took a couple of hours to get Sydney's noodles hooked up and the blood flowing. Sydney was several hours past her bed time and at 10:00PM last night Sydney's head popped off and began twirling over her body. She was violent, angry, and inconsolable. She threw her body from side to side of the crib and began screaming in horror. These bouts of rage lasted about five minutes and continued to repeat themselves for the next hour. We ordered some Vistaril and Tylenol and finally at about 11:00 PM we achieved sound, peaceful sleep.

This entire episode was very scary. And this is the part that I really don't want to talk about. I handled the situation very poorly. I am used to common sense and calm nerves prevailing but for some reason last night I could not find either. It was very much like the other Mark had returned after a long, long hiatus. I could not make sense of things and I made some bad decisions which, I think, made things worse for both Sydney and Lynley. Now, I didn't scream or throw a fit. I didn't yell at anyone. But I was helpless, angry, and self-centered. My priorities were definitely not in the right order. I was mad at Lynley because she was ordering me around. You see, she had forgotten her glasses at home, so whenever we needed something from the nurses she would send me. I resented this because I always felt that she would send me to talk to the nurses when we needed something, especially Vistaril. You see Vistaril is a subject of debate. Many nurses use it like water. It is primarily for nausea but has the side effect of drowsiness. So many times it is administered to keep nausea at bay but, definitely to produce sleep. Some of the nurses that we have met over our time are less inclined to use it because the effectiveness of the drug wears off over many uses. But for some reason, I am always the one that is sent off to enter into this debate and, for this reason, at this point, I would rather not use it at all just to avoid the conversation. I feel like a drug addict asking for another fix. Like I said -- selfishness. I am trying to come to terms with this but last night, with the other Mark out, I was incapable, I was mad, and I was dishing out blame to everyone but myself. I know I am wrong, and I try to be good, but surprise, surprise, surprise I can't be good all of the time. But next time, I will be better.

Sydney, Lynley, and I arrived at the house at about 9:30 AM yesterday. Sydney spent the day playing and laughing. She quickly returned to her normal schedule and the rest of the day was uneventful. She had a two hour nap at noon. She ate well. She went to bed at 8:00PM. So far she has slept peacefully and is yet to wake up this morning. Once again, I am amazed at how quickly things change.

Sydney is in great shape. She spent a very "normal" weekend with her family. This morning we are preparing for another doctor's visit. Her blood will be tested to see if she is ready for a stem cell collection. We will be in touch as we know more.

RUNNING OUT OF BAD HABITS

2:30 PM 7/29/2003

It has been a scary day. It didn't start off that way though. Sydney had trouble sleeping last night due to pain which was, most likely, due to the overproduction in her bone marrow. Last night the doctors increased the amount of GCSF from 60 mcg to 160 mcg. The purpose of this was to increase the amount of stem cells in her blood stream so that the collection would have a high yield. Other than the pain, however, it was a pretty normal night and morning. The biggest issue we had was getting to the hospital by 6:00AM. For those of you that know me, you know how stressful it can be if we are not fifteen minutes early. Once we arrived everything went as expected. The nurses prepped her for surgery, we drew labs, hooked up her fluids, and of course did our best to comfort Sydney in a scary place after a sleepless night. At 8:00 AM we left her and went to the surgery waiting room. About thirty minutes later Dr. Iglesias, our surgeon, came out to tell us that everything went as planned with the placement of her new catheter, and just 15 minutes after that Dr. Howery came out to tell us that the biopsy and bone marrow aspiration went off without a hitch. It was after this that things became more complicated. Shortly after seeing our doctors a nurse came to get us and lead us back to the recovery room. Sydney had apparently had some bleeding from the biopsy insertion point and woke up while they were applying pressure to the area. Sydney, of course, was not the least bit happy about being restrained without her mommy and daddy and threw a fit. To top that off they had tried to take an x-ray of her hips (Sydney's worst nightmare). In the scuffle that ensued, Sydney agitated the area where the new catheter had been placed and began bleeding from there as well. So, long story short, they asked us to come back to calm her down and help them with an x-ray. After about 30 minutes they sent the three of us up to the Bone Marrow Unit for her stem cell collection. Once we got up to the room and had a chance to look at her we noticed that her left side was drenched in blood. For some reason the blood was not clotting and we were having trouble keeping the insertion point of her new catheter from bleeding. Additional blood tests were taken and another scary revelation was looming. We still don't know why her blood wasn't clotting because all of her basic blood tests were normal. One of the running theories is that someone accidentally injected her with high dose Heparin. You see, they put a much stronger dose of Heparin in her new catheter to keep the blood from clotting in it. Now the protocol dictates that any time you use either of the lumens on the catheter you first "suck out" this dose of Heparin so that it is not flushed into the body. The side effect of that mistake would be the inability of the blood to clot even give normal blood counts. Hmmm. Sounds familiar. Luckily, there is an antidote and Sydney had it administered recently. She does not appear to be bleeding any longer and her blood pressure is in somewhat normal ranges. So now as of 2:30PM she is resting comfortable minus a few high pitch whimpers.

Now, I was scared stiff and I still am to a certain extent. My baby girl went from healthy, normal two year old to pale, sickly, bleeding child in a matter of hours. Once again, when things seem to be at there worst I found myself bargaining with God for Sydney's survival. Quite frankly, I am running out of bad habits to swear off. I have considered asking Chance and Monty if I can bargain off some of theirs. Bad things just happen so quickly in the world of neuroblastoma and it seems that the good things just take forever. Today is yet another example of that. Sydney is just to precious to go through this ordeal and I absolutely pain for her. I once again find myself in this position of fear and desperation and the only thing that lets us begin to cope is our hope, our faith, our friends, our family, and the great oncology team that we have surrounding us. For that I am thankful. Tomorrow will be a better day.

Well, tomorrow isn't here yet. The good news is that we got the new line site to stop bleeding, unfortunately the bad news is that the biopsy site had been bleeding all along. Now, I don't want to mislead, it was hidden by bandages, blankets, bed linens, and a diaper. All of the time we were concerned about the line site and simply didn't consider her other site. I sat with Sydney on my lap for about two hours and put pressure on the biopsy site and finally we achieved a blood clot. I had pressed so hard for so long I am pretty sure that my thumbprint will be permanently emblazoned on her tushy. Currently there is a large bruise and an indentation from my thumb.

Last night went from bad to worse and it was a battle into the wee hours of the night. Everyone was worried and there simply were not any answers. We battled fevers, chills, low blood pressure, low oxygen levels, swelling, anemia, funky lab results and just about anything else you could think of. It was by far the scariest night we have had since this nightmare began. This morning Sydney is doing better . She is awake and alert and signs of herself are starting to reappear. She is clearly sore but appears to be in less pain. Her color has returned and it is really nice to be able to differentiate her from the bed sheets.

I am amazed at Lynley's ability to cope when things are at their worst and last night was no exception. She was right on. She was clear headed and exacting. Except for the fact that she would hold and cuddle and love Sydney, you would have had no clue that Sydney was her child. She was professional, courteous, and on top of her game. She was never in the way and always willing to dig in when Sydney was in trouble. I can't think of another word for it; I was simply amazed. I think Lynley handles those times better than I do. She thinks more clearly and is more prepared than I am to deal with these crisis. It is at those times that she is in charge and I just try and stay out of her way. I was taught well. I do exactly what I want to, just as long as she tells me to do it first. In short, I am good at the big picture and Lynley is good at the moment to moment. I think it is this combination that has allowed us to work so well together and, in the end, what will benefit Sydney the most.

Yesterday was a much better day, by comparison. Sydney was feeling better and although she still had not totally recovered she was definitely showing signs of improvement. Unfortunately, they had only collected 4.7 million (we need at least 5 million) stem cells the previous day so we had the joy of hooking her up to the apheresis machine for another 4 hours. This is actually kind of a blessing. If they got a good collection that would mean that we would have more in reserve if we should ever need any. In the back of my mind I had always hoped that we would be able to have an extra supply. So, all in all, I am not disappointed that we had to go through the process again. It isn't really that bad. The tricky part is maintaining her vitals to watch for a few side effects. In that sense it is nerve racking. We had a couple of issues but Sydney got through the collection without any major catastrophes.

Today we hope for a couple of things. One, that the results of the stem cell collection are good. We want a lot of stem cells. Second, we hope to hear back about the results of the bone marrow aspiration. We want to hear that they could not detect any neuroblastoma cells. I don't know how realistic that is but I am hoping for it anyway. When she was diagnosed, I believe, they said she had about 60% neuroblastoma cells in the marrow on the left side and about 20% on her right. A reduction would be great, because that is a sign that the chemo is working. To go to 0% would be phenomenal. So, as usual I am hoping for the best but prepared that it might not be the case. Third, we are hoping to have her new catheter removed. It will take about fifteen minutes of us holding her down while Dr. Eames slowly removes it. I know Sydney will not be happy but hopefully we can get that done without too much of a temper tantrum. Lastly, we hope to go home. Boy, wouldn't that be nice.

Tomorrow, Sydney will be back for a CAT scan and a bone scan. These tests will give us a very good indication of her progress. She will be under anesthesia for these two tests, which is a little nerve racking after our last experience, but I am sure that things will go well. Unfortunately, I will not be here for part of the tests due to an important presentation for work but Lynley will have friends and family there to support her. I really feel guilty that I won't be there. I have tried to figure a way out of my commitments but there is just no way to do it. So, I will go. I will try and stay focused, give a great presentation, and then race back to be with my family. If I am lucky, I should be able to catch the second scan.

Well a lot has transpired over the last day. We have been running and running and running. So the questions is: WHAT do you know? And unfortunately, at this point, still not a lot, but hopefully, tonight we will. For now, here is what we know or think we know.

1. We collected a total of 11.1 million stem cells which is a little over the equivalent of two stem cell rescues so we are extremely happy. We will have enough for her transplant and plenty in reserves.

2. The preliminary scan of the bone marrow aspiration did not reveal any neuroblastoma cells. This is shocking, really, and we are expecting them to find some as they are reviewed in more depth. Nonetheless, this is great news. We went from over 60% on the left side to near 0%.

3. We have not received any official results from the bone scan or the CT scan. However, after the bone scan the technician asked us a very interesting question. He said: "So you have already had the surgery to remove the tumor?" Which surprised us greatly. We know that there was clearly some tumor left but enough was gone that the technician asked us this question. Keep your fingers crossed.

Unfortunately, I do not have a lot of time right now but that is the world as we know it.

This is one of those days that we have been waiting for. Now let me get my facts straight. Dr. Eames called last night to give us the news. The results from the CT scan were back and they are extraordinary. Sydney's tumor has shrank by 85 to 90%. It is now 3/4 of an inch by 1 1/2 inches. Her left kidney has returned to its normal position and appears to be functioning correctly. The tumor no longer appears to encase any arteries or blood vessels. In Dr. Eames words: "They rarely, rarely see this dramatic of an effect, especially after two rounds of chemo." They also received the official results from the bone aspirate and they have found no evidence of disease in the marrow. Now, I could repeat this information and if I wasn't so damn excited I would. Now, I realize we still have a long way to go but how good does this feel. It just goes to show how well love, hope and prayer work. I don't want to discount all of the drugs, doctors, and nurses either because everyone has helped us get this far and without their support, kindness and expertise we wouldn't be able to say these things. Yes, today is a good day. We are still waiting on the official results of the bone scan but Dr. Eames seem to feel that there was less uptake there as well. (Uptake is the amount of radioactive material absorbed by the body due to disease. In other words: more uptake, more disease; less uptake, less disease.)

This begs a lot of questions that are quite interesting. Do we change our game plan midstream? Do we stay with drugs that have been so effective? Does our protocol change? All good questions and it is a delight to be able to be in this position to ask them, but I don't think the answer is yes to any of them. As I have said all along, Neuroblastoma is a tricky disease that likes to come back over and over again. Although changing our game plan might increase her short term quality of life I truly believe it could hurt her chances of surviving this beast in the long term. Now, I might be wrong and it is up to Dr. Eames to guide us down the road and I will follow her advice. She is the coach and we are just merely players in the game. So, I believe, we will continue down the path of this extremely aggressive protocol in the hope that we continue to see these incredible results and that each procedure gives her a better chance at defeating this disease forever. Today we will celebrate this hurdle and bask in the glow of our success for as long as we can.

Sydney had a great weekend. We spent much of our time celebrating our successes. Saturday we went to a park near our home which is known for its ducks and geese. We went early in the morning so as to avoid the crowds of other people. Sydney had a blast feeding cheerios to the wildlife there. One of Sydney's favorite animals is the duck and she absolutely loved feeding the mommy ducks, the daddy ducks, and the Sydney (baby) ducks. Later that evening the Robertsons brought us over dinner. Sydney got to play with her long lost love, Truman. It had been over a month since she had played with Truman and Preston and let me tell you she was ecstatic. I was amazed by Truman. He was gentle and considerate with Sydney which I thought was a lot to expect from a five year old boy. They played and laughed and ate dinner together. A good time was had by all. Now don't get me wrong, I s