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.
So here we go……
Day 5 ( I think)
10:00 AM June 26th
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.
4:00 PM June 26th
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.
DAY 6 - BAD DAY AVERTED
11:15 AM June 27th
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.
More later....It is time to play with my daughter.
9:30PM June 27th
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.
10:10 PM June 27th
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.
THE ANXIOUS FOG
8:40 AM June 28th
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.
Her blood pressure has come down to 143/65.
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.
SOMETIMES YOU JUST HAVE TO LAUGH
8:00 AM June 29th
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.
7:30 AM June30th
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.
1:20 PM June 30th
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.
8:45 PM June 30th
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.
10:45 AM 7/1/03
Sydney's tumor feels softer, a possible indication of tumor shrinkage. Thank you for the prayers.
8:35 PM 7/1/03
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..
A UNIQUE MARRIAGE
11:00 AM 7/2/03
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.
Your loving husband and friend.
O' HAPPY DAY
6:45 AM 7/3/03
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.
9:55 AM 7/4/03
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.
9:05 AM 7/5/03
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.
8:40 AM 7/6/03 aka Lynley's Birthday
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.
DEJA VU ALL OVER AGAIN
8:35 AM 7/7/03
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.
RECOVERY SIDE EFFECTS AND PREMATURE DATING
8:55 AM 7/8/03
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."
8:15 AM 7/9/03
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.
SOMETIMES YOU JUST GET MAD
9:30 AM 7/10/03
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......
A JUNIOR MOMENT
1:35 PM 7/11/03
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...
THE PRAYERS ARE WORKING
8:45 AM 7/12/03
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.
HOME SWEET HOME
7:25 AM 7/15/03
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.
2:45 PM 07/17/03
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.
THE unOFFICIAL STATE OF SYDNEY ADDRESS
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.
THE unOFFICIAL STATE OF SYDNEY ADDRESS (part 2)
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.
THE COMFORT OF HOME
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.
A NEW PERSPECTIVE
9:45 AM 7/22/03
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.
THE CHEMO PLACEBO
6:20 AM 7/23/03
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.
WHAT WOULD DR. PHIL SAY?
6:40 AM 7/25/03
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.
SURPRISE, SURPRISE, SURPRISE
7:31 AM 7/26/03
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.
7:30 AM 7/27/2003
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.
ANOTHER DAY, ANOTHER VISIT
7:00 AM 7/28/03
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.
8:20 PM 07/29/2003
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.
THANK GOD IT IS TODAY
9:02 AM 7/30/2003
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.
7:20 AM 7/31/2003
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.
KNOCK ON WOOD
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.
WHAT DID YOU JUST SAY
6:40 AM 8/2/2003
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.
A "NORMAL" WEEKEND
6:30 AM 8/4/2003
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 still am not excited about my daughters infatuation with this little boy but I certainly was glad to see her so happy and doing normal activities. The next day we went to the zoo just as it had opened. It was perfect timing because it was cool and not many people were around. Truman and Preston surprised us again by showing up to the zoo. The kids had a great time walking around and looking at the animals. All in all, it was a spectacular weekend and it was great to see Sydney doing some of her favorite things.
Before the weekend Sydney was looking pretty pale and had dark circles under her eyes. I am guessing it was from the grueling week she had. I am glad to say that with each day that went by she looked better and better. Today she is starting to look like herself again, just a little bit thinner. She is still eating and drinking well and appears to be happy. It is amazing to see the difference first hand of what normal activities and the comfort of home can have on her health.
I am doing pretty well. I had a great time with Sydney and my family this weekend. It was relaxing and it almost felt like we were living in a dream state. Everything was so normal and it was such a nice vacation from what has become ordinary. With that being said, I am still trying to grasp the implications of all of the good news. It is great to hear that the tumor is shrinking, especially so drastically. But, in the back of my mind, I am searching for meaning. The effectiveness of the treatments is an extremely good thing because, as we have said before, some neuroblastoma kids fail to respond to the chemotherapy. So, I would have to think that this enhances Sydney's chances for survival. So short term, this is great news. What I don't know, however, is how this effects her long term chances of survival. The great response that we have seen has no effect on the prognosis and our treatment plan does not change. So, in this sense, it is bittersweet news. Don't get me wrong, I am extremely happy with the results. I could not have hoped for more. In reality, I do not know that we could have received any better information. This nasty disease is just such an unknown. I crave information. I want to know what this means. How have other children that have had this response faired? What protocols were the under? What treatment options did they explore? Which were effective? As always, there are no guarantees, there is no sure thing and for those reasons it is incredibly frustrating. I will spend the next few days researching and studying to try and formulate a plan and to figure out where we stand. But I also know that I will not find the answers I need. What I will find, however, is more comfort and assurances that we are doing everything we possibly can. I don't mean to be a downer, and absolutely not pessimistic, I just want to know that this means that my baby will lead a happy, healthy life. And unfortunately, it doesn't.
THE CIRCLE OF HEALING AND CAPACITY TO LEARN
8:40 AM 8/5/2003
Sydney is still doing wonderfully and, once again, has all of the appearances and actions of a normal healthy little 2 year old girl. It really seems odd to me that Sydney is doing so well. Here she has an extremely aggressive cancer and is routinely exposed to toxic and deadly drugs in extreme concentrations and, yet, she still seems to be more concerned that I participate in "Itsy Bitsy Spider." Once again, I find myself reflecting back upon how resilient children are. In many ways I am so thankful that she is so young. The "toddler" perspective on life is so refreshing. I think, perhaps, this is why this journey has been bearable for us. I think we gain our strength from Sydney. I know that sounds strange. Me, a 32 year old male, is gaining strength from a two year old, but it is true. Seeing life through her eyes is really simplistic. It doesn't matter what goes on around her as long as Mommy and Daddy are there to love her. She experiences no worries about her disease. She doesn't have the capacity to understand the implications of having Neuroblastoma. Some might call it a naive perspective but I think it is much more than that. Her happiness, at any given moment, is a direct reflection of the love and comfort that she feels. It sounds silly but I believe love conquers all, especially in this case. By showing Sydney love, comfort, hope, and strength, she believes it too. It is akin to the thought: "If Mommy and Daddy says it is okay then it must be." Because of her youth and her mental capacity, Sydney doesn't make judgments about what we say and how we act she just accepts them as facts. She emulates our actions and our beliefs, our strengths and our weaknesses. If we show her that we believe everything will be okay she believes it. Because of this, it is my postulation that Sydney's body reacts to the comfort we provide her. Yes, I am saying not only that Sydney's state of mind exudes healing but I believe that there is also a chemical effect within her body that makes her healing come more quickly. Without the fear, anger, and anxiety her body is more capable of fighting disease. Now, don't get me wrong, I have absolutely no proof of this theorem. Nonetheless, I believe it. Because Sydney's body and attitude both reflect healing and success we see it with our own eyes. We see a happy, healthy child. That gives us joy, comfort, and happiness which we pass back to her in our appearance and our actions. In this sense it can be a never ending loop of healing for all of those involved.
Neuroblastoma, as with any cancer, is a puzzle. At some point in time we will discover the answers to why they happen but for now it is a complex puzzle that is missing most of its pieces. Is it an exposure to some known or unknown carcinogen? Is it a fungus? Is it a genetic predisposition? Unfortunately, the biggest problem is the lack of information to figure out why neuroblastoma even exists at all. There simply is no single repository of the information necessary to figure out what is happening. Most research is aimed at fighting the disease. It is my belief that until we understand why the disease starts we might learn how to stop it but we may never learn how to prevent it. I have spent much of my time researching in three directions: 1. Where does neuroblastoma come from? 2. What is available to stop the growth of neuroblastoma? 3. How does Sydney's case fit in with the others? It is an incredibly time consuming undertaking but I truly believe we will find many answers. Over the past few months, I have learned more than I did throughout my life combined. I never enjoyed biology or chemistry and reading literature was certainly never one of my favorite pastimes. But recently, I crave this information. For the first time it makes sense to me. I can digest, previously foreign and incomprehensible information quickly and efficiently. Now I didn't take a super memory drug and I am no smarter than I was on June 20th of this year but something has definitely changed. I simply absorb the materials. I can make quick and informed judgments and I feel extremely comfortable with my decisions. So my question is: What has happened? Why have I changed and how did I change? Could it be a prayer to God? Could it be love for my daughter? Does love conquer all?
WHAT DOES IT ALL MEAN?
5:55 AM 8/6/2003
Sydney is continuing to do well. We still have small battles as you would with any two year old. Sometimes she is a funny, energetic joy and at other times a spoiled little snot. What nice problems to have. I spoke with Dr. Eames yesterday to confirm some of Sydney's test results and talk about our upcoming hospital visit tomorrow. The results of Sydney's bone scan were not as good as previously thought but it was not surprising to either of us. Basically, in the final study they could not find any less uptake in many of the areas of Sydney's metastases. Now, this isn't something to worry about because of what the bone scan looks for. I understand how the bone scan works the least of all of the tests so bear with me. Apparently, the contrast that Sydney drinks targets areas of damaged bone and is also absorbed by some diseased soft tissues. The radiologist looks for how much contrast material is absorbed by the bone and other areas. Now, clearly Sydney's abdominal tumor appeared to absorb much less contrast material (because it was much smaller) but the purpose of the test was to look at the bone metastases. On the bones there was not a significant change in the amount of uptake. Again, this material is absorbed by damaged bone so it isn't necessarily indicative of live tumor but were tumor has been recently. In short, Sydney's bones have not had time to heal so this is not a surprising fact. In some cases, the amount of uptake never changes. It doesn't mean the disease is still there, it just means that there is bone "damage." Basically, this news fell in the "not bad" category.
Another item that I was concerned about was what all of these results mean. We used some strong words to describe how Sydney was progressing; like "drastic change", "85% to 90% shrinkage", and "results like this rarely occur", but what does this all really mean to Sydney and our family. Unfortunately, in the long term scheme of things it may not mean much. It bodes well for Sydney right now. It means that right now we are beating the disease. It indicates that Sydney will be more likely to beat the disease and get to NED (No Evidence of Disease) status than she was the day we were diagnosed. But there isn't any hard data to show that. We base this information on others experiences. It is still great news because many kids fail to respond. Many kids have disease that continues to progress. And many kids do not make it this far. So, in this sense, it is great news. But, there still are not any guarantees. What I wanted to know was whether this information meant that Sydney would be less likely to relapse. The problem with this question is that there have never been any studies on "quick responders" and, quite frankly, I don't think there have been enough of these children that are comparable where a statistically significant result could be produced. So, what I have is anecdotal evidence. I talked to several parents of children who responded quickly to see how they faired and what treatment decisions they made. Some relapsed and some didn't. But all of the parents "felt" or "heard" that early positive response to treatment was a good sign, but it didn't change the aggressiveness of the monster we are fighting. All of these parents continued to treat there children very aggressively with the belief that they had to do everything they could to prevent relapse. A few of these children were even diagnosed within a year of Sydney, so long term results were not even available. So, what do I take from all of this. Thank goodness that we are in the position that we are today, but I will keep fighting, loving, and praying just as hard as I can.
I just can not tell you how wonderful the parental support groups are for neuroblastoma. I made a plea to one of the newsgroups about Sydney's test results and received many responses. I found out that some of the research was right under my nose the entire time. I found out that her results were a significant factor in her long term survival and for that I have immense gratitude for the other parents who are also in this battle. I have included this link to a pdf file which explains the research in detail. In short, it is good news for Sydney and our family, it isn't a "silver bullet", and it won't change the aggressive treatment that Sydney will receive but it gives us more hope and comfort. Basically, this document looks at the reduction of tumor cells in the bone marrow and how prognostic of a factor that is. What they found was that had she not had a reduction she would have had a worse potential outcome. The speed at which Sydney's bone marrow cleared was not prognostic but it was the fact that it did clear that was important. So, Sydney's results were not in the group who had a worse potential event free survival. A special thank you to Seffi Varsano for sending me this great news.
12:10 PM 8/7/2003
Sydney's blood results are back and we have been admitted for another ride on the chemotherapy twister. Both Lynley and I are worried about this particular round of chemo. This round includes both cisplatin and etoposide which are just plain nasty drugs. Sydney has not had these drugs before so it is especially scary. Most of the really life threatening reactions occur almost immediately so the first fifteen minutes of the administration of this round of chemo are particularly frightening. These drugs also have more common side effects like loss of hearing and reproductive damage so we are praying very hard for the best outcome possible. As things progress I will check back, but for right now, I don't feel like writing.
I FORGIVE BUT I JUST CAN'T FORGET
4:40 AM 8/8/2003
Sydney's first doses of chemo this round went off without a hitch. We had our usual "first night back at the hospital" problems with Sydney but we have become quite accustomed to dealing with her change in behavior. I fully expect her to be back to herself this morning. As I had mentioned yesterday, both Lynley and I were extremely scared about the drugs that she was receiving this time around. I am guessing that "firsts" are always going to be pretty frightening as we journey down this road. I had assumed when this whole mess began that these treatments would get easier and easier as time went by but, in retrospect, I think I was wrong. I would guess that I was just as scared yesterday as I was when we were first diagnosed. I don't want to mislead, this journey has become more bearable with almost every day that has gone by. It is the new procedures that seem to reignite the worry. This may sound contradictory to what I have said before but, in my case, it is more frightening now because of the knowledge that I have acquired. When we first started this mess I learned a lot about Neuroblastoma and I prepared myself for the worst, given her condition. Knowing that there were successes in this field and having a complete trust in my heart for the doctors and nurses, I was assured by the technical expertise of those that surrounded us. I didn't know why many of the drugs were being given to my child and I had no understanding of the importance of proper dosing, order, and procedures. Since then, I have become aware of all of these intricate details and I am rather paranoid that everything is being administered correctly. I would hate to be one of our nurses because, now, we truly do have the knowledge to be dangerous. I think much of our increased fear is due to the mistakes made last week in recovery. Although I know it was not one of the nurses on our floor, and although I respect them greatly, and although they have never given me any reason to think any differently, I find myself double checking everything. I can feel the anxiety well up inside me anytime they come through the door. It, quite simply, isn't their fault but they are continuing to pay the price for a mistake that one nurse made in recovery and, in many ways, so am I. It is really pretty funny because, at the time it occurred, I really wasn't that mad. I knew they were human and I knew mistakes could be made. I was always a little weary of the staff in anesthesiology, surgery, and recovery for many reasons. They didn't seam as caring as our oncology nurses. Many didn't appear as technically proficient either but they certainly gave off an aura that they thought they were. Some even seemed to look down upon us. They also seem overworked. (You would not believe the volume of kids that go through the surgery center.) So, given this, I could see how a mistake could be made. I wish it wasn't on my daughter but, nevertheless, I could understand. My concern at the time was that they took responsibility for their actions, they fixed my daughter, and that they reevaluated their procedures to help ensure that it would not happen again to another child. All of which, it appeared that they did. So, it was easy for me to forgive. I just wish I could forget. It would make life so much easier. In this sense, ignorance could be bliss. However, the stakes are just too high.
YOU CAN'T AVOID REALITY
7:50 AM 8/9/2003
We are well into day 2 of round 3 of chemo. Sydney appears to be tolerating the drugs well but these next three days will really be the important days to watch her. She has been quite herself, playing and laughing and singing. She woke up about 4:00AM this morning and decided it was a good time to watch "Bambi". It was quite funny, really. She said "Sydney no asleep, Sydney awake, Sydney watch 'Bambi'!" As we were a little worried about some low blood pressure issues, we indulged her. In about thirty minutes her blood pressure returned to normal and in just 2 short hours she fell back asleep. I slept in a bed next to her and she would look at me occasionally to make sure I was up and watching it with her. "Daddy no sleep, Daddy watch.", she would chirp every 15 minutes or so. Demanding little twerp if you ask me. I am not sure whether she got that from Lynley or I but I am abstaining from comment.
Every time we come back to the hospital I try and make it as good as it can possibly be. I still wear my Hawaiian shirts and I try to think of these visits as our little vacations. I even wear the same shirts in the same order every week. I have decided that they are our lucky "chemo" shirts. It is funny, I never really paid much attention to superstition before this hiccup in our lives, but now I knock on wood and cross my fingers a lot. I think the nursing staff isn't to sure that I am all together upstairs, you know, a few tacos short of a combination plate, my elevator doesn't get past the mezzanine level. Here is this odd man who smiles a bunch, he wears the same Hawaiian clothes over and over, and is always knocking his knuckles on the door frames. Nevertheless, it seems to work for all of us and we make the best of an ugly situation. Either that or they just tolerate me well.
I have found that I am really doing well with this situation. I believe that I have accepted the fact that Sydney has neuroblastoma. Honestly though, I don't think about it much. It is not that I do not want to or that I can not. It just doesn't seem to come across my mind as often as it used to. I have prayed and hoped so hard I just no longer imagine Sydney being beat by this disease. To me we just come back to the hospital every so often to get Sydney the medicine that is going to cure her. There is no doubt in my mind. To me it isn't an "if" it is a fact. If we give her the medicine she will get better.
Some days, however, we are all shocked back into reality. We realize that this isn't a hotel and there aren't any guarantees. Yesterday, was one of those days. There is a young girl here at the hospital, she was right next door to our room. She was winning the battle and in just days she went from living the rest of her life to living it in just three short days. I pain for her and her family and many of my prayers last night were for them. I don't know if God can give them some of our strength to get through this time but I pray that he does. Life is not fair and kids, definitely, should not get cancer. Not all of the stories here end this way, but all of the parents on this floor feel a spike driven right down through their souls whenever something like this happens. We all know we could be walking in their shoes and we don't know what we can do to stay out of them. The only things that get us by is our love for our children, our faith in God, our hope and the belief that our children will be different. So, today, my prayers are for a very sick, sad little girl and her family, that Sydney continues to beat this monster, and that the other families find the strength to go on.
6:15 AM 8/10/2003
We have now administered three (of four) rounds of Cisplatin and Etoposide. Sydney continues to do well although she is drinking and eating less. We have discovered that these drugs have a delayed effect so we may not see any drastic changes in her behavior until we get home. Sydney spent much of her day yesterday in the play room and appeared to be extremely happy. She is sleeping well and although it is a fight to get her to go to bed at a decent hour she is getting more than adequate sleep.
I spend much of Sydney's sleeping hours on the computer researching her condition. Although new research comes out everyday it just doesn't seem fast enough. As a parent, you first wish your child never gets cancer and then once your run into that wall you wish medicine was many years ahead of where it is. This is such an incredibly complex disease complicated by many different cell lines, characteristics, and responses. I am starting to understand why no one has figured it out thus far. It seems that as soon as a seemingly conclusive set of guidelines comes out several other contradictory pieces of research follow in its footsteps. Everyday I have been able to find out new information that gives us hope only to be followed by another contradictory piece of information a couple of days later.
Sydney is responding very well to everything so far. I think of it as a mixture of good medicine and good prayer that has gotten us along so far so fast. I have even heard some of the nurses call her response a "miracle." Based on the research I have found (which could change tomorrow) it certainly is, but it also reminds of the long, long road ahead. In one sense it is easy to come in here week after week for treatment for Sydney. But if you think about what is actually happening to her it becomes extremely hard. Every thing is life and death. We are not playing games. Without exact science and hard prayer her condition can go from utterly stable to complete chaos. As I look ahead into the next year of treatments I can isolate no less than ten critical life and death procedures (not including the myriad of possible complications that could happen as a result of the disease itself or the treatment of it). What puts this into perspective for me is that I remember being nervous about her having tubes put in her ears. How I long for such simple routine medical procedures.
In reviewing case studies of other children with Neuroblastoma I have quickly realized how lucky we have been. Just the treatment can cost some loving child their life. Complications from toxicities of the drugs, serious infections, and medical procedures are so commonplace. It is amazing to me that Sydney has continued to stay on this roller coaster. So what has been the difference. Why is Sydney responding so well to date? I know your thinking, hey Mark, don't you remember last week when she was bleeding, her blood pressure was dropping, her oxygen level was about to fall to the ground, and you had to put pressure on her open wounds to keep her from bleeding out. The answer is yes, and I still think we are lucky. What does that tell you of the nature of this disease? So, again I ask, what is the difference? Are our hurdles yet to come? I don't know the answers but I can tell you that I pray harder and harder everyday. I love my family more and more every day. I appreciate those who continue to pray for our sweet Sydney more and more everyday. And I especially thank God for every day. Yes, we have a long, long road ahead. Thank you everyone for your past , present and continued support. I think if we all pray and hope hard enough we might just get through this.
7:40 AM 8/11/2003
Sydney is finally through with the chemo for this round. She has slowed down a bit. She is back to her post-chemo morning throw up routine and she is looking a little paler. She still has bursts of energy but takes frequent rests. She has slept really well over the last 48 hours or so. I am happy to say that I haven't had any more early morning "Bambi" episodes, but in another breath I do kind of enjoy our moments alone together. If all goes well we should be going home today, but only time will tell. She seems to be doing better than she did at this point after the first round of chemo but not quite as well as she did after round 2.
HOME AGAIN, HOME AGAIN
6:50 AM 8/12/2003
Sydney is home. We were able to come home with out any blood or platelet transfusions and Sydney continues to weather this particular round of chemo well. We met with Dr. Howrey yesterday morning and he appeared very pleased with Sydney's progress. He felt that Sydney would continue to tolerate these drugs well and that we could expect her to continue with her current level of activity. This was very nice to hear because both Lynley and I were expecting much worse. Sydney's white blood cells have continued to drop off and we are back in the position of keeping her in "social isolation" until she recovers from this round. This has become a normal occurrence after each round and it is something that we have come to expect. It just seems that they had dropped off earlier than usual. I don't know whether that is due to my bad memory or the effectiveness of the drugs. I will have to do a little research. Today, I expect that Sydney will continue to have a healthy appetite, she will play a lot, and she will sleep soundly. She has gotten much better at tolerating the many changes in her life and seems to move back and forth from the hospital environment without to much of a battle. Last night she did not make a sound and is still asleep as I write this entry. Just as I write that the little princess has stirred. It is time to be a daddy again.
AS THE WORLD TURNS
5:29 AM 8/13/2003
Sydney is still doing very well. She played very hard most of the day and slept soundly during her nap. Although we had severe storms last night that woke Lynley and I up, Sydney slept right through them. We had a couple of episodes of nausea and we fear another bout of mucositis (she has developed a small sore on her bottom lip.) Her appetite is still pretty good and we are trying to keep the food flowing. It is amazing the junk food we will let her eat just to try and keep her eating. A common occurrence in children with neuroblastoma is severely decreased appetite and anorexia. So we continue to feed her about anything that she will eat.
With Sydney doing so well right now, Lynley and I are doing our very best to reintegrate into our work and our lives. We are both extremely anxious and uptight. Not that we are fighting or anything. I think we are both really good for each other. It just never seems like we ever have enough hours in the day. We both feel guilty for going to work and not spending more time with Sydney. And we both feel guilty for not working enough because we are spending so much time with Sydney. I think we could really use about a year of 48 hour days. I know I don't want to miss another minute with Sydney. I want to be there with her. I want to play with her. I want to watch her grow. I want to hold her. And I want to love her. The fear of missing any minute of her life is daunting. On the other hand, I know I have to work. I have people that depend on me and I have to be there to carry my load. It is just a very tough road to travel when you don't know what the next day holds. I have tried to find the answers but none have come to me. I think this is just one of those things that I have to suck up and get past. I know I can't go on living my life for Sydney alone. I have responsibilities. I am a grown up. In the back of my mind, I know that having our own lives outside of the world of neuroblastoma is best for our own sanity and health. I just don't want to miss another minute of Sydney's life, not knowing, for sure, how much we have left. I know many people think that any child can be gone at any minute due to some tragic accident or something of the like. And I know that you have to get past those fears. But all I can tell you is that, in this world, right now, it doesn't compare. Our greatest fears are all to real.
I GUESS MY HOUSE IS TOO COLD OR WE ARE NUTS
7:30 AM 08/14/2003
Sydney woke up a little earlier than usual yesterday due to nausea. She was not in a particularly good mood and seemed out of sorts throughout the morning. Her appetite was much less and her intake of liquids was down. About 10 AM she became very pale, her lips started to turn a little blue and she fell asleep next to me on the couch. Both Lynley and I took this as a sign that it was probably time for another transfusion. So, we called the doctor's office and made plans to go in as soon as she woke from her nap. At noon she woke up and decided it was time to play. Her color came back to her face and her lips turned a rosy shade of red. Yes, once again, the Dungan family had been faced with the potentially life threatening condition of low blood counts, responded quickly and efficiently, made plans to rush in and see the doctor, only to be tricked, yet again, by our dear little snot. Since we had already made an appointment to go in to see the doctor, Lynley and I tucked our tails between our legs, scooped up the wiggly worm and headed out to see the doctor. We had assumed that, quite possibly, her recovery would be short lived and the excitement of waking up and seeing her mommy temporarily got her blood flowing. Wow, how dumb are we. As soon as we got to the doctor's office Sydney was cute and playful, talkative and exuberant. She was extremely happy to be there because she new she would get to go to the play room and play with the other kids with "noodles." To say the least, Lynley and I were embarrassed. As always the staff was very nice and took her in very quickly to look at her and take her vitals. As expected Sydney was perfectly normal. There was nothing that could be done but write a prescription for Phenobarbital. (FOR HER PARENTS). The nursing staff and office personnel were very sweet to us and sent us home trying to assure us that we were not us nuts as we felt. We went home and had an excellent day with no other phantom medical conditions. This same scenario has happened a couple of times in the past while we were at home. Quite frankly, it has Lynley and I stumped. About the only thing we can think of is that our house just must be too cold. Yes, Lynley and I like it cold enough to keep our drinks cold without ice. So, I guess, quite possibly Sydney may just get cold. Only time will tell. Today we will be going back to the doctor for our real appointment -- this ought to be interesting.
JUST A LIL' BIT
5:20 AM 8/15/03
Thankfully, there is not a whole lot to say today. Yesterday we went to our official appointment at the oncology office. She had her blood drawn and what has become the usual round on noninvasive tests. Sydney did particularly well with all of the nurses and doctors with the exception of demanding that Mommy and Daddy have their blood pressures taken first. She enjoyed playing in the playroom and was not happy that we left so soon after arriving there. Her blood counts are already well on the rise (they are much higher than her pre and post chemo tests). The only problem is that they haven't yet dropped off as a result of the chemo. We hope that this effect will help her deal with the low counts when they strike in the next week or so. The shot that we give her every night is called Neupogen (GCSF) which is basically a blood growth stimulating factor. Based on these test results I guess we can all see how well it works. She is getting much better at taking the shot. She knows that it is coming and, aside from a small scream, she seems to be content with hugging daddy (as I hold her down) while Lynley administers the drug. It is a very quick process and Sydney handles it like a little trooper as long as she gets "big family hugs" afterwards. Sydney calls them exactly that. Lynley and I basically make a Sydney sandwich and we all squeeze real hard.
Once again, Sydney has returned to her normal napping schedule and is back to her usual self for the most part. The nausea is slowly fading into the past. The only, kind of funny, new difference in her behavior happens right before she goes to bed. After we finish eating dinner and clean up the dishes Mommy and Daddy take Sydney upstairs to our bedroom. We all three get in bed. Mommy on one side, Daddy on the other, and Sydney in the middle. Unless someone is late into the bed in which case Sydney will steal your spot. Any efforts to get your spot back will be halted with the words "No, Move, Sydney Spot" Yes, anytime you get out of bed to go to the rest room or get a sippy cup or anything of the like, you will return to the room to find Sydney sitting in your spot grinning ear to ear. We play this game for about an hour until her bed time arrives. We have actually started telling her it is time for her bed time a little earlier so that we can hear her utter the words "No night night, no night night, stay just a lil' bit. Sydney watch TV." It is like clock work and hearing her say "lil bit" is just way to funny for Lynley and I to bear. So, yes, we are bad parents encouraging her to get in the habit of staying up a little later and getting away with it. We realize the monster we are creating but, at this point in life, who cares. We enjoy every minute of every day with her and moments like these are just to valuable. We will correct her behavior - in just a lil' bit.
WICKS DON'T HAVE TO BE SNICKS
Sydney continues to fair well. She is playful, exuberant, and demanding. The only ongoing problem that we currently have with Sydney is her appetite. She seems to be drinking more and more each day but her diet needs improvement. In an effort to cram as much food down Sydney's throat as possible, whenever Sydney is hungry we let her eat. As you might assume, this is not good practice for raising a child. It is a difficult balancing act because of the nausea. Sydney has no diet restrictions at this point. The important factor is just that she continues to eat. You see, many kids with Neuroblastoma stop eating entirely. Sometimes for months and in many cases years. For this reason we have tried to keep Sydney in the habit of eating. What she wants, when she wants. But as she comes out of the bouts of nausea following the chemo it is always a chore to get her focused on eating the right foods at the right times. This isn't necessarily a stressful event but it is definitely a frustrating experience that we must go through every three weeks. I keep reminding myself that we have "been here, done this before" but each time I am not sure if we will be able to get her to eat "right" again. Like I said, it is a difficult balance. We do not want her to get out of the habit of eating, but on the other hand, we don't want her to eat just anything.
On another note, the biggest problem I had today involved an IQ test. The questions are as follows:
If some Wicks are Slicks and some Slicks are Snicks, then some Wicks must definitely be Snicks.
This is a true/false/neither question. I answered the question as false. I got the question wrong thus lowering my IQ score. As is my nature, I questioned the integrity and accuracy of the test. I asked those around me to see what they thought and each of them, with the exception of Monty and Ashley, thought that the answer was true. I wonder if that was because I told them that the answer key had said so? Either way, I developed a proof to prove that there was indeed a case that Wicks may not be Snicks. To which they still said I was wrong. Which makes no sense to me because they agreed to the accuracy of my proof.
The other question that I missed was as follows:
Which of these items is most unlike the others? Apple, pear, banana, coconut, grape.
To be honest, I thought this was a lousy question as well because I see several answers. Quite frankly, I should be an expert on this question type because Sydney and I play this game everyday on Sesame Street. For the record, I chose coconut because it was the only item that came in a shell. I also understood that grape was a possible answer because it was the only one that grew on a vine. But, nevertheless, I chose coconut because I felt that it also looked much differently, it was fibrous, and was also the only one that contained "milk." The correct answer was grape which led into an entirely new debate with my wife and her family. Of course, most of them chose grape as well.
So you ask, "Mark, what is your point?" And the answer is: Aren't these great problems to have? They are so very normal. Yes, frustrating, but these are ordinary, average, everyday problems. How sweet it is.
Sydney had a fair weekend. She spent much of the weekend playing but we could definitely tell she was not at her best. Feeding time continues to be a battle. We have reverted to the "eat whenever, whatever" method of nutrition. For some reason we had two days where should would not eat anything at the table or in her high chair. We were seeing the effects of malnutrition and felt that a proper eating schedule was a battle for another day. Sunday she ate pretty well considering. We changed things up a bit and had breakfast outside. We referred to this as a "party." As of late we have only eaten outside when we have birthday parties or "get togethers" so this seemed to change her perspective on eating at a table. She ate very well and continued to snack for the rest of the day. She had dinner in the appropriate spot and although her tummy was full from all of the snacking she was pleasant to be around and did eat a little. Another trick we have played on Sydney is substituting her normal snacks for high caloric versions. Some she has fallen for and others we have snuck in without any balking. We go to the doctor today and this, I am sure, will be an area of discussion.
Another thing we are starting to notice again is that she is becoming pale and, as of last night, appears to be bruising more easily. Yes, this is a sign of needing a blood transfusion so we have not ruled that possibility out for this morning. However, as the past has dictated, we are not sure if it is real or imagined. In some ways it would be nice to see that she needed a transfusion so we don't think we are going nuts. The "pale" look can be fairly serious and I don't want to become too complacent with this sign. I would hate to make the mistake of not moving quickly enough because we thought we were being tricked again and did not want to look silly. Talk about "The boy who cried wolf.". It is amazing the lessons we learn and relearn.
6:40 AM 8/19/2003
I feel so proud. We were actually worried for a reason. We noticed Sydney's condition, acted quickly and efficiently, threw caution to the wind, and yes, accurately predicted Sydney's need for platelets. I know this sounds strange for a parent to show such joy when his daughter receives a platelet transfusion but I just can not help myself. It is so nice to see that we accurately predicted her condition. I was beginning to think I was nuts. In the past, almost every time we had thought Sydney needed some blood we were dead wrong. My biggest worry was with all of these "wolves" we would become more complacent with Sydney's "pale" look and react too slowly. But now that we have had success and a little history we are both becoming more in tune with Sydney's body. We have a better understanding of the timing of certain medical events and I think we are becoming better caregivers. I know what you are thinking -- Mark you have had one success. And although that is somewhat true, we have learned so much by our failures I think we are much more capable of handling the future. It takes time and experience to learn many of the ins and outs of chemotherapy and the body's biological reaction and I finally think we are grasping the necessary nuggets of information. So with that I declare myself "Super Dad - Defender of Low Blood Counts."
Sydney had a spectacular day. She had an absolutely wonderful time at the clinic. She just loves the play room. I think she actually looks forward to our visits. She gets to watch the fish, see the "choo choo", and play with the other kids with "noodles". The playroom is jam packed with just about every toy you could imagine for a child. Usually at any given moment there are between 5 and 15 kids there. In addition to this the Child Life Specialist is always available to provide food, activities, and counseling. Many times volunteers are also there to play with the kids. Pretty amazing for a doctors office if you ask me. This is one of the many reasons that I am so glad that Sydney is being cared for at Cooks. Sydney spent about 4 hours there yesterday and I don't think she wanted to leave.
In the afternoon Sydney was upbeat and glad to be spending time with Mommy and Daddy. We had a few minutes of two-year-oldishness but for the most part it was a great afternoon.
GOOD CAN COME FROM THE STRANGEST PLACES
7:20 AM 8/20/2003
Sydney continues to be fairing this treatment well. It has now been ten days since her last chemo treatment and her blood should have dropped off or should drop off very soon. Her appetite is great and she is active. We are no longer seeing signs of low platelets or blood counts but as with anything else with this disease we monitor her constantly. It would not shock us one bit to see her drop off and need a transfusion tomorrow. Tomorrow morning we take Sydney in to see the cardiologist for some tests. This is a routine set of tests to see how Sydney is bearing the drug dosages. Some of the drugs that she has had in this last round are known to cause cardiac damage. These tests will show whether she has sustained any to date. If she has, some of which is reversible. The important thing is to continue to monitor her internal systems so that we can catch many of the side effects early and adjust drug dosages in the future. So, needless to say, we are praying for normal results tomorrow morning. I imagine we will be at the doctor most of the day as we have an oncology appointment right after her cardiac tests.
We, as parents, are also doing pretty well considering. We have become as comfortable as we can be given the circumstances. I know I have said it many, many times before but we, as adults, adapt pretty well too. Lynley and I are closer than we have ever been before. We never really had to count on each other before. Well at least not in the same sense. We were always good partners, but, we could exist in our own separate worlds. We were great at raising Sydney together and we both handled our responsibilities well, but we were definitely further apart emotionally. Now, with the stakes so high, we have not only continued to be a good team but we have grown closer together as well. I think much of it is that we have developed a new common unique bond. It is funny, over time, with hectic schedules, disparate professional lives, and differing interests, I think at times we were growing apart. Not that it was a bad thing. After many years of marriage and the comfort of normalcy I think we just grew in different directions. Don't get me wrong, I never loved or appreciated her any less. I just became less dependent upon her to live my life. Many of the things that happened in my daily life became less significant to our relationship and many times it was other friends that I shared many of my feelings and life "details" with. But now, with our new common bond and interest, Lynley has become the most important support in my life. I now share my life with her. She is my best friend and, in many ways, our lives, once again, revolve around each other. I wish Sydney's condition wasn't the trigger that brought us back together but it is yet another example of a positive that came from this horrible disease. I was happy with my marriage before, but I honestly don't think it compares to the joy I feel now in sharing it with Lynley.
NINE TO FIVE
6:37 AM 8/22/2003
Wow, what a day. It was long. It was boring. And, I may not have mentioned this, it was long. Yesterday morning we took Sydney back to the clinic and hospital for some tests and a check up. First, we went for an ECHO and an EKG. Let me tell you, Sydney was not the least bit happy about this. As we waited Sydney was in a pretty good mood. She was playful and did a good job entertaining those that walked by us. When we were actually called back in to the lab was when it changed. She was not happy and Mom and Dad were not the least bit comforting. She cried and wailed for fifteen minutes straight. I guess it was the fact that she was doing something new in a strange place but she just could not be comforted. For those of you that have never had one of the noninvasive tests the most uncomfortable part of them is the jelly that they put on your chest. It is icky but that is about the extent of it. For some reason Sydney was just not in the mood. As always the technicians were great and did an excellent job working with us under these less than perfect conditions. I am continually amazed at how well these people deal with children and parents but I guess that is just another testament to Cook Children's Medical Center. It is funny, really, Sydney can sit through a 30 minute bone scan or a 30 minute CT scan without a peep, but something that takes about ten minutes really gets her screaming through the streets. She had had these tests before but it was at a time when Sydney was very sick and in her hospital room. She handled it very well before so I am guessing that it just must have been the new environment that freaked her out. Regardless, she recovered quickly and we were off to the clinic.
At the clinic, Sydney was much better but still not 100 percent. She had her usual tests but this time she required a blood transfusion. That was a four hour proposition. We were now dealing with inadequate nap time and inadequate nutrition and we now knew this was going to be along afternoon. Normally, when we go to the clinic and we know we are going to be there a long time they order lunch for us, but with the timing of events today it just didn't work out. So Mom and I, the MacGyver of snack foods put together a somewhat healthy conglomeration of lunchtime snacks. Additionally, they had beds so we were able to get her to sleep for just over an hour. The next thing we knew it was five o'clock and just about that time the mini-vampire was ready to go home.
We know very little about her test results but what we do know is that she is back up to 11KG ( This is the same weight that she was when she was diagnosed two months ago) Sydney once appears to us to be back in vivid Technicolor instead of her normal black and white ( Black from bruises and White from low blood counts) And, yes, she has plenty of feistiness. Based on her behavior in the ECHO lab, no one doubts the robustness of her lungs. As always, as I learn more, I will pass it along. For the time being, we pray for a healthy heart, continued success, and much shorter clinic visits.
6:36 AM 8/23/03
Sydney is back to herself today. It is truly amazing what a full tank of gas can do for a two year old. I don't ever recall seeing her walk yesterday. She ran to the kitchen. She ran to the living room. She ran everywhere. She was possessed. All of this is very good to see, but you must understand, I am used to caring for a sick two year old, not a healthy one. So, to say the least, I am tired. She ran her daddy ragged yesterday. Yes, yesterday, for the first time in a very long while, I was the daddy of a two year old and not the daddy of a child with cancer. It was so nice and yet so incredibly frustrating. It was a great day for all.
6:40 AM 8/25/03
Many days there just isn't a whole lot to say. Take this weekend for instance. For the most part it was completely normal. The only difference between Sydney this weekend and Sydney before this chaos was that at 7:30 in the evening we had to flush her "noodles" with Heparin. Other than that activity, the last few days were absolutely normal. I helped my brother-in-law remodel our guest house. Mimi and Dede came over to play with Sydney. Lynley went shopping. We all pitched in to help watch an incredibly rambunctious two year old. That was basically it. No drama. No excitement. No fear. Just plain old average days. Had you told me that I would have seen normal average days again when Sydney was diagnosed I would have thought you were nuts. There were actually times this weekend that I forgot Sydney had neuroblastoma. Well, not that I forgot, it was just that I didn't think about it. I must say, that was definitely a first. It wasn't that I felt a great burden lifted from my shoulders or that all of our problems went away. I t was just very, incredibly normal..
As far as Sydney, well, what can I say. She is funny. She is smart. She is demanding. Sydney gets into everything and believes that the world revolves around her. She spends much of her time cooking imaginary food in her play kitchen serving us up some of the finest imaginary cuisine in the country. She likes to play nurse and take care of each one of us in the family. She takes our temperatures and blood pressures. She checks our ears, nose, throat and eyes with a mini flashlight. She gives us medicine both orally and with a shot when she believes that we need it. All in all, a pretty precocious, adorable kiddo and I am so happy that she is mine.
Today we go back to the clinic for our routine check up. Our appointment isn't until late in the day so we are hopeful that she will not need blood because that would most likely mean a night in the hospital. I imagine that we will hear good news that her counts are on the rise and that we should prepare to go in for our next round of chemo on Thursday.
5:50 AM 8/36/2003
Sydney went to the clinic yesterday afternoon. She was playful and energetic. She is proving to the nurses and the administrative staff at the clinic that she has a mind like a steel trap. One time several weeks ago, while we were signing out at the clinic, one of the administrative personnel offered Sydney a lollipop. Sydney tucked this nugget of information away in the back of her mind and has since decided that the sign in desk is actually a lollipop stand in disguise. She is very polite but quite demanding that she gets her lollipop every time she passes by the desk. She notices the strangest things. On another occasion we were walking by a chair where a child was screaming because he was about to receive a "shot" to take blood. Although Sydney has sat in that chair many times she now associates this experience with that chair. Once again, she is quite polite but is absolutely sure that every time she sits in that particular chair she is going to get a shot. After much convincing and cajoling that she will not be receiving any "owees" she instructs the nurse on exactly what to do. i.e.. take my blood pressure on this leg, take my temperature in this ear, turn on the bubble machine, this is where I stand to be weighed and measured and now it is time for my "happy" sticker please. It really is a lot of fun to watch her growing mind in action.
On another note we didn't receive the best of news while at the clinic. It looks like we will not be returning for the fourth round of chemo on the day planned in the protocol. Sydney's white blood count took an extremely long time to drop off and is just now (hopefully) starting to recover. Her white blood cells and platelets are still extremely low. She was not transfused because the doctors believed she is recovering, however, we will be watching her closely for any signs of low blood counts. Dr. Eames asked that we start giving her the GCSF shots again for the next three days in the hope that she recovers before the weekend although it is doubtful. So, instead of going in for chemo on Thursday, it will be Friday at the very earliest. Is this bad news? Honestly, we really don't know. It is important to keep her on schedule but a couple of days probably won't matter. The fact that it took so long for her counts to drop off could be a sign of how good of condition her body is in and the GCSF was working too early. As with everything in the world of neuroblastoma there are no absolute answers. Our doctor simply stated "sometimes this happens." So once again we are in the position to pray that Sydney's counts rise quickly so we can keep her as close to the planned schedule as possible, and keep fighting the disease aggressively.
I WANT MY ROSE-COLORED GLASSES BACK
6:35 AM 8/27/03
It seems like it has been a really long time since I have talked about how I feel in regards to Sydney and her condition. I think much of this is due to my inability to put my thoughts down on paper. Daily, I still feel haunted and the "what ifs" still go running through my mind. I definitely still feel pangs of fear and isolation regularly but I can't really find the language to translate what I think and how I feel. It is if there are no words. With Sydney doing well and continuing to grow, I find myself wrapped up in all of the new things she does everyday. That has always been one of my joys. Since the day she was born, I have watched her do something new everyday. At first, it was little things like discovering that her arms were actually attached to her body and that both daddy and mommy had noses. As she grew she continued to have more and more new discoveries. This has been my favorite thing about being a father. I get to watch as Sydney has grown day by day and hour by hour. Now, I watch Sydney as her imagination is developing and it just seems to get better minute by minute. It is these realizations, these little joys, which, for me bring back the reality of the situation. During the times that I watch her, and hold her, and play with her I become totally absorbed in the moment but, in the end, I always follow that pure joy with the scariest of thoughts. I try to deny the feelings. I tell myself that our story will be different. But the fear just becomes more evident. I think about many things and the thought of being without her is the worst. I actually sometimes think of what I would tell people if she died. Now, this is a big taboo subject for me. This is a major guilt of a parent experiencing this type of trauma with their child, however, what I have found is that all of us do it. It is an unavoidable thought. As a parent it carries and unbelievable amount of guilt just for having had the thought. There is something irrational way back deep in a parent's mind that says: "If I think it will that make it come true?" I can't believe I just wrote that, but it is true. I am hoping that writing this feeling down it will go away. I want to bask in the glow of celebrating Sydney's life and accomplishments. I want to not have to think about what the future holds. I want to live in denial. I want for Sydney to be the case that is different from everyone else's. I want to see life through rose-colored glasses (or, at the very least, blinders). I know that this is a demon that I will have to live with for the rest of my days but it doesn't mean I have to like it.
LIFE'S LITTLE HICCUPS
6:10 AM 8/28/03
We are still watching Sydney very closely. Last night she developed a cough which has us extremely worried. It isn't that it is a bad cough, or even that it is constant. It is just a small little Sydney cough that we hear sporadically over the monitor from her room. It feels silly to be worried about a little cough but both Lynley and I are. We have become very adept at watching for any signs from Sydney and anything out of the norm gets our hearts racing. This morning we will call the doctor to see if it is anything that we should be worried about. With her counts as low as they are we know we will probably be taken in. I just pray that she doesn't wake up with a fever this morning.
Other than that little little hiccup Sydney continues to be doing well. Her color is still a little pale and she has developed another bruise on her forehead, however she acts like she feels well and her activity is at about normal. Whenever we discover new little strange occurances we review the past couple of days to see if there were any other signs of ill health. That can become problematic because Lynley and I can find abnormalities in just about everything. Now I question, "Did she sleep more than usual yesterday? Did she complain of any other aches and pains? It is these questions that will drive you nuts because we can always find other symptoms, whether real or imagined. For now, I will just remain comfortably paranoid until we can get some more answers.
WE FIND COMFORT IN THE STRANGEST PLACES
6:20 AM 8/29/03
Sydney spent much of yesterday at a slower pace. Once she finally woke up in the morning, we discovered that Sydney was covered in snot (sorry can't think of another word right now) She had a very low grade fever and as I mentioned yesterday both Lynley and I were worried. We called the oncology clinic and they told us to watch for fever and treat Sydney with a decongestant. Throughout the morning she was extremely lethargic but we think this was mostly due to the drugs. Her temperature remained stable at about 99 degrees. We kept her head upright and low and behold she stopped coughing. At noon Lynley put a pillow under the head of the mattress to kept her head up a little. This seemed to do the trick and Sydney slept soundly until almost 3:30 in the afternoon. Although her appetite has decreased we are feeling much better about the situation. Thankfully, today we go back into the clinic to get a check up and see if her blood has recovered. It is a double edged sword. I would like Sydney to start chemo and stay on track but a holiday weekend in the hospital and the threat of some type of nasal infection certainly have me thinking that starting next week may not be so bad.
On another note, I am coming out of my "Worry Wart Syndrome." I once again am feeling much better about our direction and what the future holds. (Although that could change by the time I finish writing this.) Maybe writing down my feelings actually has helped me yet another time. Once again, I am finding successes with children that are on Sydney's protocol. I think much of my problem has been in what I read and hear. Many of the parents of children with Neuroblastoma that helped me the most when Sydney was first diagnosed have had problems as of late. There have been several relapses and there are even more who are on the brink of the end. As I correspond with these parents, trying to give them strength and peace, I give a little of my strength away with each word I write. Or, maybe I too become overwhelmed by their tragedies because it hits so close to home. But once again there is always someone out there that has a refreshing perspective on life, the past, and what the future holds. Here are two excerpts from parents that have really put things into perspective for me as of late:
"In some strange way I feel my family has been blessed by this disease. We have learned a very important lesson about life...the fruit of the spirit; love, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Whether our children are here on earth or have gone home to heaven they are angels who have blessed many with the most beautiful things in life."
"I realized the biggest thing that I have learned is that I have a HUGE capacity of love for my child that I never realized I had. I always thought I was just an "ok" mom till the disease brought out the mama bear in me, and I realized how much I absolutely cherish my child and would do ANYTHING for him. I have also learned to love "unconditionally" and never take ANYONE for granted."
In reading these lines, I realized that what they were saying was very true. I am a very different person today than the day Sydney was diagnosed. I love more and I appreciate more. I would like to think that I am a better person. I wish it had not taken such a dramatic turn of events to teach me these (and many more) valuable lessons but I am glad that it did. So yes, today, I have to give thanks to the many people, places, and things that have given me strength, love, and compassion. I have learned from Sydney, my wife, my family, my friends, and from many that I did not know so well. Thank you.
P.S. I still want my rose-colored glasses back.
WAITING & WAITING &.....
We were hoping for good news but unfortunately we did not receive any. Sydney's counts are still low. Her platelets and WBC counts have risen slightly but her Hemoglobin has continue to fall. Apparently, Hemoglobin trails behind the others cells in how it reacts. We were not given a transfusion because of the belief that Sydney's counts were on the rise even though her blood counts indicated that some should be given. We are scheduled to go in, not next Tuesday but, next Thursday. Apparently there is something in the air because of the six children getting ready to go in for chemo, not one of them made their counts. We are were not able to go in next Tuesday because a) they were not sure that Sydney's counts would have recovered enough and b) there won't be enough beds available on the oncology floor at the hospital. So we are left to sweat it out. It makes Lynley and I both incredibly nervous and although we are thankful to spend the holiday together we do not like the fact that we are not back fighting this disease.
Both Lynley and I have a sense of uneasiness. Things are moving so very quickly and although our hopes still run very high there is a part of us that is incredibly scared of what the future may hold. We cherish every second, minute, hour, and day that we have with Sydney. It is times likes this, while we are waiting to begin again, that the tension and worry about the situation hits me the most. I know this aggressive nightmare is still living within her and I want to keep the battle going without pause. I want it out. I want it gone. My biggest fear is that every time we finish a round of chemo and we are waiting for her blood to recover, the neuroblastoma cells are recovering too. I know all too well how aggressive and fast growing this tumor is. Could this fear not be based in reality? Unfortunately, I know the answer to this and it makes it all to real. So this weekend, I am going to love my child just as much as I can, I am going to spend happy, quality time with my family, and I am going to pray that this ugly disease is already dead inside her and that these little hiccups in our journey will have no impact on Sydney beating this disease for good.