6:50 AM 9/1/03
Well, I truly believe that Sydney is on the road to recovery. All of the immediate family is here and Sydney has been taking advantage of the fact that everyone is here to see her. For the most part her color is returning and she seems to have a ton of energy. She is running constantly and she can easily make me loose my breath just trying to follow her around. Although I have been ostracized out to the guesthouse along with my brother-in-law to remodel it, whenever we get a chance to take a break and come back in Sydney is still going full blast. I wish I had her energy. My wife was nice enough to allow me to take the day off today so I am excited to have a full day to play with Sydney again. I just hope I can last.
WOW, A HOLIDAY
6:30 AM 9/2/03
Sydney could not have had a better holiday weekend. She spent time with all of her family and as a special treat it was Gami's (Sydney's Great Grand Mother) birthday. She did so much over the weekend I can't think of anything that she did not do. She once again was a little energizer bunny. My wife let me off of work on the guest house yesterday so I got to spend much of the time with them. I don't remember seeing Sydney quite so happy. One of the neat things that Lynley did over the weekend was help Sydney make some paintings for our bedroom. She went out and bought several tubes of acrylic paint in the colors of our bedroom and two artist canvasses. She then let Sydney go on a creative terror and paint some abstract art for us. We hung them up on the wall in our bedroom and they look great. They may be paintings that only parents could love, but personally, I have always felt that most abstract art that I saw in museums was the same way. The benefits of our abstract art are that the colors match our room perfectly and we have the honor of living with our artist. Sydney is quite proud of her work and takes every opportunity to tell everyone that those paintings are her masterpieces.
Like I said, emotionally and behaviorally, Sydney seems to be in top notch condition. Her medical status, however, continues to concern both Lynley and I. Unfortunately, we just are not seeing any signs of her blood recovering. She still appears pale (coloration in her face and extremities is usually very short-lived) although she is extremely active. We are very concerned and anxious to get back on the chemo bus. We are hoping and praying that we see some drastic changes over the next couple of days because we don't think we could bear another weekend of waiting. Like I said on the first day of this diary, I get comfort from the fact that we are doing something and this waiting is about to drive me crazy. I want to get back. I want to fight this cancer. I do not want to give it even a moment of rest. I want it obliterated.
THE GREAT UNKNOWN
6:20 AM 9/3/03
Yesterday was just like many of the days before for Sydney. She is still pale but shows no other signs of being sick. She is fun to be around, playful, and a new occurrence, thoughtful. I really enjoy every minute of watching her and it is amazing to watch her little brain pick up new things. She is getting much better at her "pleases" and "thank yous" and it is really funny to hear her say "Cuse Me" after sneezing or "Cuse Daddy" after I sneeze. She is very watchful and mindful of others making sure we all have the opportunity to participate in her games of make believe or while we are sharing at the dinner table. It is funny, she is considerate in a very demanding way. Last night she gave me her napkin for my lap as she had noticed that I didn't have one. How very sweet. BUT.. she did demand that I got up to get her a new napkin for herself. It is these little occurrences that make it so much easier to get through the days.
As of late, Lynley and I have been on a crusade to figure out what causes Neuroblastoma. It has become a game to us really. I think as a parent of a child with Neuroblastoma you always feel guilt on some level. No matter how much the research dictates and the doctors tell us that Sydney's cancer is not because of something we did, the fact of the matter is that Sydney is our blood, we created her, we nurtured her and we have and continue to raise her. There is no aspect of her life that we did not have some part in. So, no matter what we see and hear from others, on some emotional level there is always some guilt. Was it the mold we had in our house, was it the fact that we micro waved her milk to make it warm, was it the tap water that we used in her formula. There are a thousand different things we have thought of and knowing that it is probably not related to one event but rather a combination of events we have generated millions of possibilities. For me, the guilt isn't by any means unbearable. I have done my very best and will continue to for the rest of my days. I just wish I knew. I know I can't take back what has happened but it just would be so much easier if I understood what happened. Whether it is something I did or something I didn't, whether it is genetic or just a freak of nature, whether it was my wife and I or somebody else; I would just like to know.
A NEW TACTIC
At 2:30 PM today we go back in to the oncology clinic to see if Sydney's blood has recovered. I have been very supportive of Sydney's low blood count condition but I have had it. I, now, officially demand that Sydney's counts rise. I am no longer supportive of her bloods poor behavior. The time is now. Think of this as a call to action. I don't care what it takes. If her blood counts aren't at the appropriate level I am considering a "sit in" in the Doctor's office and demand that her counts rise. It is time for swift, aggressive action.
Now that you blood cells realize that I mean business, grab your wife or husband blood cells and start reproducing. We need an army here. We need all of you to stand up and fight for your lives. I know that there will be losses in this war but it is important for "bloodkind" that you work together, white blood cells, red blood cells and platelets alike. Join your brothers in arms. It is time to unite. It is time to stand up and fight. It is time to defeat the blue cell army (Neuroblastoma) once and for all. I am here to guide you and I am standing by your side. If you need reinforcements I will transfuse them. If you need antibiotics in your arsenal I will provide them. But now is the time. It is now or never. Your rest is over and it is time to fight.
May the Plasma be with you.
Now, I hope we have an understanding.
HOSPITAL, SWEET HOSPITAL
6:30 AM 9/5/2003
So, all this time, all I had needed to do was have a stern talk with Sydney's blood cells. I wish I had known much earlier. It would have saved much worry and anguish. But, yes, finally at 6:00PM last night we were admitted back into Cooks for our fourth round of chemo. Sydney's counts were good but she still needed a blood transfusion. Apparently the red blood cells didn't listen to me as closely as my brave little platelets and white blood cells. That is okay though, I told them I would send in reinforcements as needed. Sydney started her CAV (Cytoxin, Doxorubicin, Vincristine) cocktail in the wee hours this morning and seems to be doing very well with the exception of waking up at about 5:00AM this morning and asking politely to watch Bambi (twice so far). She is in great spirits. She is very sweet and she is talking constantly. Mostly she is making cute little comments about what is going on around her. For the first time, we are in the South wing of the Oncology ward which is very new to us and a little disconcerting as we have to learn new routines, new nurses, etc. As usual with this place, with the exception of being in a new environment, I can not think of anything negative to say about this place. The nurses are confident caring and reassuring. It is time to play with Sydney. We can chat later...
4:15 PM 9/5/2003
As this diary is not only for me and it is also for my daughter on her eighteenth birthday I came across this today. It was in an email I received from a friend and I thought it encapsulated many of the things I would like her to realize and learn. I also know that she may not listen to her daddy when she is a teenager so here it is in another's words:
The 92-year-old, petite, well-poised and proud lady, who is fully dressed each morning by eight o'clock, with her hair fashionably coifed and makeup perfectly applied, even though she is legally blind, moved to a nursing home today. Her husband of 70 years recently passed away, making the move necessary. After many hours of waiting patiently in the lobby of the nursing home, she smiled sweetly when told her room was ready. As she maneuvered her walker to the elevator, I provided a visual description of her tiny room, including the eyelet sheets that had been hung on her window. "I love it," she stated with the enthusiasm of an eight-year-old having just been presented with a new puppy. "Mrs. Jones, you haven't seen the room . Just wait." "That doesn't have anything to do with it," she replied. "Happiness is something you decide on ahead of time. Whether I like my room or not doesn't depend on how the furniture is arranged.. it's how I arrange my mind. I already decided to love it ... "It's a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do.
Each day is a gift, and as long as my eyes open I'll focus on the new day and all the happy memories I've stored away . Just for this time in my life. Old age is like a bank account . you withdraw from what you've put in .. So, my advice to you would be to deposit a lot of happiness in the bank account of memories. Thank you for your part in filling my Memory bank. I am still depositing.
In rereading it, I guess it is also a lesson for me.
On another note Sydney is doing well today.
11:25 AM 9/6/2003
Sydney is a little slower today. She seems to be a little tired and her appetite has decreased. She still show flashes of play and exuberance but not as much as previous days. She slept well through the night and we are hoping that she naps peacefully today. We are officially finished with the cytoxin portion of our cocktail and her continuous infusion of vincristine and doxorubycin will continue into early Monday morning.
Dr. Eames came by this morning to check Sydney and we enjoyed talking to her, as always. She says Sydney is progressing as expected. To update what we know at this point:
1. Sydney's stem cells that we collected a little over a month ago are clean. No neuroblastoma was detected. Very good news.
2. Her EKG and ECHO were normal although one of the test showed some inconsistencies. Because the other test did not confirm the problem the doctors do not believe it was an issue.
3. We are expecting Sydney's surgery near the end of October or the beginning of November. This surgery will be to remove any existing tumor. If all goes as planned we will be having Sydney's stem cell transplant in the beginning to middle part of December. Unfortunately we will be spending Christmas in isolation in the bone marrow unit. The important thing is that we are together. Santa Claus, please take note of this.
So, there we are. I will write more as time allows.
I CANNOT TELL A LIE
7:00 AM 9/7/2003
Hmmm... Where do I start? I guess I shall begin by saying that I lied to my diary. Well, maybe "lie" is too strong of a word. I can say that I deliberately left out certain facts. I told a partial truth. But, in my defense, it was Lynley's fault. So here goes...
I have to take you back to the time just as we began this journey with neuroblastoma. Everything in the world was coming at us at once. We were trying to digest everything from cancer literature to our own feelings and emotions. On about day 10 of our journey Lynley realized that she could very well be pregnant. After a midnight breakout from the hospital to run to the store for a pregnancy test (and then another run for ten more tests for confirmation) Lynley discovered that she was indeed pregnant. A meeting and ultrasound the next morning with her OBGYN confirmed the diagnosis. Not all of the information was good however. In the battery of tests that we had been through with Sydney during her diagnosis Lynley had been exposed to radiation from both the CT scan and the bone scan. Additionally, the stress of our situation added another burden for Lynley and her pregnancy was considered high risk. Luckily, neuroblastoma is not known to be hereditary but the possibility of her carrying a child full term was not likely. We were told the next couple of months would be the most critical and she would be watched closely. At that time I had a magnitude of feelings going through my mind. Another child was something that we had discussed prior to Sydney's diagnosis and in many ways it was planned. But now, at that moment, we were both happy but also felt -- "What could make this process any harder?" (By the way, upon reflection we comforted ourselves with the fact that it was not twins - that would have been harder. Triplets was not even a consideration as that would have sent us to the funny farm.) I was, and am, so happy at the thought of having another child but the stress and gravity of the situation makes it bitter sweet.
Lynley has followed her OBGYN's advice to the letter and here we sit at the end of the first trimester with a healthy baby in her tummy. The child has been codenamed "Rice" as that was the size of her/him at our first ultrasound. Baby Rice is now the size of a walnut but we are sticking with the codename for the time being. Our newest addition to the family has all of her/his fingers and toes and a solid heartbeat. We continue to pray and hope for success. So, on March 10, 2004 we should be bearing onto the world yet another Dungan child (our apologies) and a playmate and sibling for Sydney. I don't know what it means but Sydney has told us that she has a baby in her tummy as well. (That could make things really, really difficult. I have always been worried about that little Truman, he is just like his dad.) Sorry we could not have told you sooner but we never know what the future may hold.
P.S. I am sorry Lynley made me lie to you.
3:30 PM 9/7/2003
Sydney has been feisty all day. She is more active than she was yesterday. A funny note about yesterday: Sydney's blood pressure was running low so we decided to get her up and get her a little energized to see if it was because of the way she was sleeping. We decided to walk around the halls one time to get her energy up. Sydney decided to run instead and completed about six laps with me chasing her around with her "noodles" trying to keep up. We finally wrangled her down on the floor to find out her blood pressure was still on the low end. I guess next time we will use a child's blood pressure cuff instead of an adult's. Needless to say the doctor (who, by the way, was watching this fiasco) was not too concerned with her blood pressure.
TIME TO TALK TO THE BLOOD AGAIN
11:05 AM 9/8/2003
Well, it was a pretty sleepless night. Lynley and I are both exhausted and Sydney is a bit cranky. Sydney's blood pressure spent most of the night at 100/ 29-35. This is pretty low for Sydney and it had the nurses scrambling for answers. Best guess at this point is that Syd's albumin is running low due to the chemo. We tried everything last night from saline bolus' to poking and prodding her into waking up and crying. Nothing had much of an effect on the blood pressure but it certainly had an effect on us. Boy are we all tired. She occasionally spikes up to 100/45 which is good but it never stays for long. She is getting a blood transfusion as we speak and we are hoping that it bumps her up on a little more consistent basis. If all goes well we should be going home this afternoon. For the time being, though, I am going to sleep. Night Night........zzzzzzzzzzzzzzzz.....
3:19 PM 9/8/2003
Thankfully, we are home!!!!!!!!!!
8:32 AM 9/9/2003
This morning has been bustling with activity. We all slept late as the first night home is a welcomed relief. There is nothing like your own bed. Sydney is doing well today although she has dark circles under her eyes. As has become the tradition, Sydney is extremely active. We are hoping that she will continue to eat and drink more and more but, for now, it is enough to sustain her.
Funny story about eating. I can't believe I am telling this story as I remember the days before having children and thinking that something like this, alone, would be reason enough not to have them. I always thought they were strange little urchins. Well, enough, here is a cute, but strange, Sydney story.
Sydney has always loved playing hide and seek. She would throw a pillow or blanket over her head and assume you could not see the wiggly toes sticking out from the other end. When Papa Kip would come to visit, he would delight in playing with her, however, when it was his turn to hide he was obviously more difficult to find. To compensate for his excellent hiding abilities he would meow like a kitten whenever Sydney would walk by, desperately searching to find him. We would say "I don't know where Papa is but I think I hear a kitty in the closet." She would open the door and low and behold there was Papa. Sydney began to meow like a kitten whenever she would hide. We thought it was so cute and we encouraged the behavior. As time drew on, Sydney would meow more and more often and even got to the point that when we were with the nurses she would act like a sick kitty that they needed to care for. (Not one has a veterinary license, but they seemed to do the job well.) As more time progressed, Sydney's imagination took over and she would spend more and more time pretending to be a kitty. Until last night. And this is where it gets a bit hard to digest. I made the mistake of asking Sydney to come out from hiding to eat a snack with me. And at that moment I did it. I asked if the little kitty would come out to eat with me. She crawled out from behind the rocker and pawed at my leg until I put her raisons on the floor in a bowl for her to eat. At the time I laughed, but unfortunately that was not the end of the behavior. It was the beginning. Sydney demands to eat on the floor "kitty" style. We even showed her how the cats ate their food up on the counter. (We did this to keep the dogs away from their food.) But all of this was to no avail. So, yes, I too have succumbed to having a child with the strangest of behaviors. The only light of the end of the tunnel for me now is the fact that I will be able to share this story with every boy that ever comes near her in her teenage years. I might even call Truman right now. I guess there is always a silver lining. So bear with us at this time of need and when you see us feeding our child on the floor please do not call CPS. We are simply doing the best that we can.
NOTHING IS A GOOD THING
11:23 AM 9/10/2003
Sydney continues to improve. Her eyes are starting to look less like a raccoon and her appetite seems to be increasing. I am quite glad that I really don't have anything to say today. It is really nice not to be excessively worried for a change.
7:00 AM 9/11/2003
I really don't know what to say. Sydney is full blast. Most of the issues that we are dealing with on a daily basis are normal two-year-old types of issues. I guess we are very blessed right now. Sure, we have worries and concerns that would seem very unnatural to a parent with a child without cancer but much of that has become our new normal. Sydney appears to look better each day but also has signs of the toll that the chemo is having on her little body. We are loosing more hair and her fingernails are starting to peel. Her appetite seems to be doing well but, as I have said before, during these periods we allow her to "snack on demand" so sometimes it is harder to tell.
I spend much of my extra time, the time when Sydney is asleep, thinking about and researching this disease. I feel like an idiot trying to read some of the materials, but slowly I am starting to grasp Neuroblastoma's complexities. I had to start at the beginning to learn about the sympathetic nervous system in general and then slowly try and grasp the life cycle and stages of the nervous system, including the 100's of different types of cells that comprise it. I really should have paid closer attention in high school. The problem that I have is that the more I learn the more I realize that there is a huge unknown. Not necessarily about neuroblastoma but about the nervous system in general. Like Neuroblastoma we know what happens we just don't know why. The interesting thing is that my research has focused on the this cancer but I have found that many cancers act the same way. They may not be nerve precursor cells but they have DNA changes and cell behaviors that, in some ways, are very similar. Additionally, many of them start at the very early ages of cell life in the precious, yet incredibly complex, stem cells. I really don't know why I am sharing this boring information here. I guess the more I write about it the more I learn. I am hoping I will just have one of those "eureka" moments and it will all come to me. Yes, I know, unrealistic, but I this is something that I can do. This is some way I can feel that I am contributing. Here is what I know (as limited as it may be) Basically, in real terms, stem cells over many stages turn into the adult nerve cells that we have in our body. At some point in this process, from beginning to end there is a DNA change in the cells that tells it to turn into neuroblastoma. These DNA changes also affect the cells ability to replicate itself. In Neuroblastoma this growth goes on unchecked. One of these DNA changes is with the NMYC oncogene. So it seemed like an easy quest to figure out, okay, at what point in the cell cycle does this change occur and why? This is what becomes difficult because the cells are all born from the same mother cells and as they go through the body they take on behaviors and eventually turn into the an adult cell that is relevant to the location that it ends up in. What I am saying that as these cells go through the body traveling to their final destination they actually change and grow based on the areas of the body that they go through. Two cells from the same parent, that appear identical can actually become different types of cells as they go through the body. So, finding a direct path and linkage, and finding out were these changes occur is difficult. Also because neuroblastoma can present in many different areas of the body it might be an indication that a) Neuroblastoma's DNA changes form very early in the cell life cycle or b) Neuroblastoma's changes are created by something that all of these cells are exposed to while going through the body. One of the other interesting concepts about neuroblastoma cells is how they recreate themselves. Based on my research there are many types of neuroblastoma cells and not all of them can reproduce themselves so it might very well be that a therapy dedicated to the reproducing cells may be the ticket. Well enough of "Nerds on parade", I just thought that writing some of my thoughts would help solidify the concepts in my head.
THE BLOOD DRAW EXPERTS
This morning we are off to the clinic. It is kind of an exciting time as Lynley and I have learned to do blood draws from home. Right before we leave for the clinic we will draw Sydney's labs, rush to the Oncology office, hand over our labs, and then commence waiting. We are hoping that this drastically reduces the amount of time that we spend at the clinic. We have been known to wait there for more than three hours just to do a simple blood test. By doing the labs at home it should hopefully cut out a few hours of waiting for them to draw the sample and send it to the lab.
We will be asking the doctors about Sydney's fingernails and toenails. They continue to peel and we are hoping to receive some type of supplement to clear that up or at the very least keeping it from progressing. Other than that we are hoping for good blood results so that we don't have to spend another four hours getting a blood transfusion. Knock on wood. We imagine that her blood counts have continued to drop off and we will be keeping Sydney in social isolation for anther week or so, but you never know. After the last round of chemo she had pretty normal counts at this point. Of course, they were different drugs and we are hoping that her blood drops off more quickly so that it will come up more quickly. Only time will tell. I am off to play doctor.....
9:30 AM 9/12/2003
Ah ha, we are back! See how beautiful being a blood draw technician can be. Sydney's WBC count is extremely low as we had hoped so we will be social outcasts this weekend. Now, we pray that it rises quickly and that we are not exposed to any bugs.
I'VE GOT TO DO SOMETHING
6:20 AM 9/13/2003
Sydney is doing well. The Nurse Practitioner didn't have a whole lot to say about Sydney's fingernails and toenails yesterday. She seemed to not be too alarmed by it and gave us the indication that it was pretty much par for the course. I guess we will stick to Flintstones vitamins. Something in the back of my mind tells me that this was a side effect from one or many of the drugs but at this point I just can't remember for sure. Regardless, Sydney seems to be doing well. It is just a careful balance of keeping her happy and occupied without exposing her to any "bugs." These days are frustrating because we can't take her out anywhere but at the same time we want to take her to the zoo and out to the mall and do all of the things that she loves to do.
As far as I am concerned, I am frustrated. I have got to do something but I just don't know what it is. Since Sydney's diagnosis I think I have done a good job being a father and a husband. There aren't any rules or guidelines but I am here, I am caring for them everyday. It just never seems to be enough. I look back over the last couple of months and wonder what more can I do. It seems to me that all I have done is simply exist. As I have discussed before, there is a lesson to learn from every experience I have in life. There is a silver lining to this cloud. I just can't seem to grasp it. I want to make a difference, I just don't know what it is. I can't seem to find a direction. I am not going to go through this without making an impact. I will be part of the solution.
Don't get me wrong, I feel my most important responsibility is that of a loving father and a supporting husband. I feel like I can and have been doing that. But I want to do more. I don't want anyone else to go through this and I have to stop it. My mom always said that I could do anything in life that I wanted to as long as I wanted it bad enough. I believe it and I have never wanted anything more. But, what do I do? How do I do it? I am just going in too many directions. I study, and I study, and I study some more. Hoping beyond hope to find some piece of information that will lead to a cure. I know I am not an analyst, researcher, or doctor but I am capable of grasping the information and making sense of it. Is that my purpose? The frustration here is that I know it is wishful thinking. I know that there are those out there who are more prepared to find the answers. So maybe it isn't my calling. So, if I follow that philosophy, how do I make a difference? Do I help raise funds for neuroblastoma research? Do I increase political awareness? I know all the facts. I know that Neuroblastoma accounts for 7% percent of all childhood cancers, I know that it accounts for over 15% of all the deaths. I also know that it accounts for over 19% of all cancers diagnosed under the age of 5 and that the mortality in that group is much higher. I also know that Neuroblastoma receives less than 1% of cancer funds. So there is a need. Is funding the answer? Is that where I make my impact? Can I help raise enough funds to make a difference? Can I raise enough awareness to make this a political priority? Can I figure out the message and the story that will make this matter to everyone? I simply don't know. Our story is no better or worse than any of the others out there. The kids of neuroblastoma are all normal children. They were all happy and carefree, surrounded by loving families, that because of a nasty cancer have all been thrown into the world in which I live. Some survive and some don't but all of them face this monster. They all have heart wrenching stories. They are all just like you and me. The only difference is the aura of pain, fear, hope and sadness that surrounds them. Children just shouldn't have cancer. They don't deserve it. We, as adults, sometimes do, but not the children. It is this line of thinking that makes me realize that something has to be done. I have to make a difference. This is my purpose in life, I just don't know what my path is.
3:30 PM 9/13/2003
Part of my problem, or need, was because of a movie that Lynley and I watched last night, "The Life of David Gale." By the way, parents of a child with cancer should definitely not watch movies where people have cancer, die from cancer, and maybe even movies that have any dying whatsoever. I don't know if I necessarily agree with the premise of the movie but it certainly did have an impact. I had an empty feeling in my gut when it was over and Lynley and I just looked at each other in silence. Neither one of us would say anything but we both felt a tremendous sadness after the movie. Not because of the movie itself but because of the fragility of life in general. It just hit too close to home. As I said, it did leave an impact on me, but for, yet, another reason altogether. David Gale was talking about the meaning of his life. His words were that he should leave this world better than he found it. That his life should have some meaning. This is what I think got me thinking in the direction that I am now, more than ever. What am I going to do with my life. Before Sydney's cancer I always thought that the profound difference that I would make would be in my child's life. That would be my legacy. That was how I was going to leave this world better than I found it. But now, that just doesn't seem to be enough.
I guess as I have gone through life I have pretended certain things just did not exist. I knew there was childhood cancer and I knew that some kids died from it. It just never affected me. I never felt it. I know this sounds disgusting, but it was always somebody else's problem. I never gave it much thought and I am trying to figure out why. For me, childhood cancer was like a car accident on the freeway. Everyone slows down to look at the wreck, wonder what happened, and check for any casualties. Once they have passed the scene of the accident people speed up and drive on with there lives. The only recollections that many gain from this experience is how annoyed they were by everyone slowing down. Very rarely, for me at least, do I reflect on the lives of the people in the accident. Usually, I don't put myself in their shoes. Now, what hits me as funny, is that many times I have put myself in others shoes when good things happen. Have you ever thought about what it would be like to win the lottery? I wonder if it is a human protection mechanism that we typically focus and identify with the good and not the bad? I don't know if it is just me who has lived my life this way? I don't know if it is unhealthy to live life from this new perspective? In many ways it sounds depressing. For me at least, it gives me some purpose. I feel better trying to help another rather than just driving by. It isn't because I was any less caring. It isn't because I was not as good of a person. I just never thought of the impact that it had on peoples lives and the children themselves. I never put myself in their shoes and asked myself how I would feel. I just went on and lived my life. It is that type of nonchalant attitude I guess that makes it easier to live one's life. But it just doesn't feel right anymore. There has to be more than just taking up space and sucking up oxygen on this planet. So, I guess, this is a good first step for me. I am now a somewhat caring, feeling human being. Another hidden gift from this nasty disease, I suppose. But what can I do? What is my purpose? Questions I will find the answers to.
A TRIP TO THE ER
9/15/03 6:30 AM
Where to begin? Saturday Sydney was rather slow-paced and it was obvious that she didn't feel like herself. At about 6:00PM we began to take her temperature every 30 minutes. At 10:00 PM her temperature hit 101.2 and a call to the doctor on call confirmed our need to head to the emergency room. Sydney has an extremely low white blood cell count so she has little ability to fight infection. For this reason, any type of infection can be potentially life threatening. Upon arriving at the ER we were immediately taken back into a room (One of the benefits of being an oncology patient with neutropenia) We sat back in the ER for roughly 4 hours while we waited for blood tests, hydration, antibiotics and such. At 3:20 AM we were admitted to 3 South where we reside today.
Sunday, Sydney was feeling a little better. We never sparked much of a fever and she was fairly active in our room. Her appetite was till down and she was not drinking much. Most of the day was consumed with IV antibiotics and late in the night we received a platelet transfusion for some sporadic bruising that we had discovered and some bleeding that become evident when we changed her dressing. I say we, but the transfusion was really for Sydney, although with the lack of sleep and stress we probably could have used a boost ourselves. Lynley is also starting to come down with the same symptoms as Sydney. We are guessing that she has some kind of sinus infection. Just for that, Lynley gets to wear a cute little mask with puppies on it.
So that leaves us at this morning. I am particularly worried about a cough that has developed overnight. As of our last blood count Sydney WBC's have gone from .3 to .1. Lynley seems to be feeling better but she still has a pronounced cough. We should be receiving the results of the blood culture sometime this morning and we are praying that it does not show signs of anything serious.
12:00 PM 9/15/03
GOOD NEWS, BAD NEWS.
I guess I get to pick what comes first. So here goes. Bad news: we will be here for a while, at least until Sydney's counts start to recover. Good news: Sydney's blood culture came back negative. That is a big relief, although that was what Lynley and I had expected. We just would not have said it without being surrounded by wood (knock on wood). Sydney's cough seems to be better and she has been fairly active this morning. We got the okydoky to actually leave the room and go to the playroom assuming Sydney wears a mask. So, there you have it. Thank you, for the prayers!
7:20 AM 9/16/03
Nothing much has changed in Sydney's world. She was very active and playful yesterday afternoon. I think we are all getting a little stir crazy. Sydney has not produced a fever for several days now and appears to be in pretty good shape. I am still waiting on her blood results this morning and I fear little improvement but I am hoping for the best. The good news is that her cultures continue to show no growth. Lynley is anxious to get out of here and back to our "normal" life. For me though, I am quite comfortable here. There are definitely things that I need to be accomplishing out in the real world but I am somewhat comforted by the hospital. I guess you could call it my security blanket. I know that sounds opposite of the way it should be but I like the fact that the answers to my medical questions and quandaries are just seconds away. For the sake of our familial sanity though I hope that there is change in the doctor's opinion and we are sent home.
1:25 PM 9/17/03
I apologize for the late update. I have found my purpose and it has had me very busy over the past 24 hours. Sydney is doing very well although her blood counts are slow to recover. We will not be leaving until we see a definite upward trend with her white blood cells. Perhaps tomorrow or the next day. Sydney is a little slow right now, as she needs a blood transfusion. But for the most part she is happy and playful. She is having fun with Mommy and Daddy. Now as far as Lynley and I are concerned we are fairing pretty well too. Lynley is ready to get out of the hospital but is willing to put up with my company as long as I do what she says. Feels just like home to me.
I LOVE SYDNEY
8:35 AM 9/18/2003
I just think everybody should know that I love my daughter. Even though she can be a stubborn twerp, a rather strange little kitten, and a two year old with all that that encompasses, I really, really love Sydney. I love her more and more everyday and, as bad as our situation may seem at times, I may have never realized the joy and happiness that I have had to date had we never walked down this path.
Sydney's blood counts are on the rise but, perhaps, not quite enough. I believe we will be going home in the next couple of days but understand today is an unlikely possibility. Sydney received a transfusion yesterday and is climbing the walls, literally. I have decided that, much like vincristine, blood must be comprised of pure sugar. I am glad to report that she is giving every indication of being a happy healthier baby girl.
THE BIRTH OF A PURPOSE
Well, you pay the price for being nosey and reading my diary. I warned you at the beginning of this mess that you may or may not like what I have to say. Today, I have a purpose and I have a goal. I call out to you for help, guidance, and direction. If you read these very words then I ask that you leave a message, email me (email@example.com), or write me a letter, whether you have an answer to my question or not. Many have asked "How can I help?" and now is the time. I am asking for your direction. I will lead, I will follow, or I will get out of the way, but I will find the answers to this horrible disease. I will be a part of the solution. In ten years there will be a parent sitting in my shoes but instead of hearing that their child has a 10% to 30% chance of survival they will here that there is a cure or, at the very least, a high probability of survival. They will hear that their child will live. That is my purpose or at least part of it (there will be more to come in the following days).
With that being said, answer this:
Why fund neuroblastoma research?
This is a question I have asked in many places over the last few days. Yes, we are all afflicted. We are fighting for the lives of our children and loved ones. But what is our message to others. When I scream from the rooftops, what do I yell? What will make the difference in the hearts and minds of the world? I know that it is hard to look at this question from another prospective, but what will make the difference. Why will somebody give funds to support neuroblastoma when they have no connection to it all? Is it because:
a. it is the most common extra cranial tumor in children?
b. it is tremendously under funded?
c. it has exceedingly high mortality rates?
d. it accounts for 7% of pediatric cancers and over 15% of the deaths?
What are other reasons? What do you think makes an impact? What is the message and why are we important? Why should someone support the effort against neuroblastoma instead of, or in addition to, something else?
Thank you and I look forward to your response.
11:32 AM 9/18/2003
Good news from the benevolent Dr. Howrey (Dr. Handsome). We will be receiving a platelet transfusion and then going home (about 4 hours is my best guess).
A SURPRISE TRIP TO THE EMERGENCY ROOM
7:20 AM 9/19/2003
After thanking all of our nurses and saying goodbye we finally arrived at home about 4:00PM yesterday afternoon. Sydney was so incredibly excited she just could not stand it. She was like a kid in a candy store. She couldn't focus on any one thing at a time and was constantly moving from one toy and one room to another. It seemed to me almost like Christmas morning she was so incredibly happy.
And then it happened. At about 5:30 I received a desperate phone call from Chance. His second son, Preston, had taken a high dive off the couch and cracked his skull on the tile floor. His wife had rushed out the door to the ER and he was waiting with his other son, Truman (one of Sydney's current love interests) until a grandparent could get there to watch him. He asked if I could run down to the ER and be with his wife and Preston (our Godson) until he could get there. He thought I was still at the hospital but, no matter, I gave Sydney and Lynley a kiss and hopped into the car and rushed back to my home away from home. Upon arrival, I found them in the triage area. Preston was responsive, alert, and thankfully the only thing wrong appeared to be a goose egg on his forehead that was actually the size of an ostrich egg. When Chance had arrived about 30 minutes later we were, once again, sitting in the waiting room. He asked me if I had any pull to get them in any quicker. I had to explain to him that our medical insurance did not have a frequent flyer program so it would be unlikely that we could get them an upgrade. We sat in the ER for several hours and waited with them. The usual group of friends slowly showed up and once again this group sat in the ER of Cooks Medical Center for another night of waiting and hoping for the best. There were laughs, worries, and I think many of the children there are still scarred for life by the rendition of the hokey pokey that I did for Preston. It was kind of eerie because this is the same group of people that was there with Lynley, Sydney, and I when Sydney was diagnosed. The conversations were lighthearted and a bad situation was made much more comforting. I am lucky to say I have about the best group of friends you could possibly have. As we left it late last night, Preston was okay but they were going to do a skull x-ray just to make sure everything was alright. It is so nice to go to the hospital and come home with good news.
I also want to thank you for all of the responses that I received yesterday. I am learning a lot and your input has been incredibly valuable. I never realized the size of the army we had behind Sydney and the extent of support that we have. I look forward to more and more responses today. I will be sharing many of the wonderful things that I have learned over the coming days. It is more important that you keep responding. This is the first step. It will make a difference. Within two weeks we are going to change the world of neuroblastoma, forever.... I have a purpose.
SYDNEY IS SUPER, GREAT, PLUGGING ALONG. I CAN NOT TELL THAT SHE IS A SICK LITTLE GIRL.
5:30 AM 9/20/2003
I am happy to announce that little Preston's head appears to be just as hard as his older brother's. The x-rays came back negative. Other than waking up a couple of times through the night he is back to himself, with the addition of a new lump. Like I said, it sure is good to come home from the hospital with good news. Sydney is quite happy that Preston is okay and in her words "Preston owee, kiss, all better."
Some days I feel like I must be living in complete denial. Sydney is, at many times during the day, so full life and joy and happiness that it is inconceivable that anything could possibly be wrong with her. Much of this is my perspective because I see her day in and day out. I can only realize the physical changes when I step back and look at pictures of healthier days gone by. If you asked me "How is Sydney?", I would say "Super, great, plugging along, I can't tell that she is a sick little girl." But inside I am slowly starting to realize the changes in her appearance. My daughter has cancer and I can now see the effects. She has lost most of her eyebrows and there are clearly gaps missing in her eyelashes (this is a new occurrence after the last round of chemo and what I think brought my attention to the changes in her appearance). It is truly amazing the difference eye brows and lashes make on the look of one's face. The healthier days between chemo are fewer and far between. She spends much more time in her "pale" state which has finally become much more of the norm that her little rosy cheeks. Her hair on her little head has slowly thinned to the point that it is probably time to have the comb over removed. Most of the time her eyes have dark circles around them and much more of the time they appear to have sunken in. She has grown taller over the last few months yet her weight has been unchanged. It is obvious now that the drugs are starting to take there toll. I don't say this to depress but rather to remind myself of what is going on in her little body and to remain focused on the bigger picture.
I don't feel sad and I am certainly not depressed and this is why I describe her to my diary. With all of these little physical changes, I still see her as unchanged. Hmmmm??? You ask? But yes, who Sydney is is not what we see on the outside. We see it in her eyes. The drugs can't take it away. That little sparkle. That look of unbelievable joy and love. It is a twinkle of happiness and it is there everyday. It has not diminished. It has not changed. It is the sign of a healthy, happy, and truly loved little girl. No fear. No inner turmoil. Pure, untainted joy. I don't have that look anymore. I am too cynical and I have been too spoiled by age and the realities of life. But in Sydney it still exists. That sparkle in her eye that tells everyone that all is good in the world. She gives that back to me in strength and hope and love. In many ways, I am also regaining my innocence. I am regaining that feeling of pure joy and it is all due to my precious gift. So when you see me with my daughter and you ask me how she is doing and I tell you "Super, great, plugging along, I can't tell that she is a sick little girl.", perhaps now, you will understand. I guess, once again, it is all perspective.
I continue to receive many emails everyday. I am learning to scream louder with a softer voice. Your input is incredibly valuable. Please continue to write me. Through you, I will figure this out. I have a purpose.
AN HOUR AND A HALF, A ROLL OF TAPE, AND A LIFETIME MEMORY
7:00 AM 9/21/2003
I guess this is partly a Sydney story and partly about me. Last night I sat in a rocking chair with a roll of scotch tape for just over and hour and a half. In the playroom, Sydney has a box that is approximately 2' x 2' x 3'. It is the box that we keep her "happies" in. Sydney's "happies" are small wrapped presents that we give her after she has a shot or some type of medical procedure. They are all small presents. Sometimes a coloring book, sometimes a bottle of bubbles, but mostly just a mish mash of inexpensive toys that we give her to comfort her after a traumatic event. This was actually suggested in many of the books on coping with a child with cancer. Anyway, the box had been emptied and I sat there in my rocking chair and Sydney laid on the floor with her head in the box. About every minute or so she would climb out of the box and say "More tape pease, Daddy." (Pease is Please in Sydneyan) I would slowly take off a two inch piece of tape and hand it to her. She would grab the tape with her left hand and shoot up her right hand with her palm facing me. At which point she would say "Nuff Daddy Nuff, tank you." (In Sydneyan she was telling me that I gave her enough tape, she did not need anymore, and thank you.) She would then get on the floor and wiggle her little body so that her head was once again stuffed in the box. A minute later this process would start all over again. I don't know whether you have to be a parent, a grandparent, or just love children to get the full impact of that moment that I spent with my daughter yesterday afternoon. For me, it was, perhaps, one of the most significant memories of my life time. It was silly, happy, peaceful, cute, funny, innocent, pure and all that is good in life. I took much of that time to reflect on my happiness and our journey. These thoughts lead to the journeys of others and the disbelief that I had ever felt any pain from her condition. It was a moment in time that I felt pure joy and I was not haunted by the beast. It was the first time in as long as I could remember. I tried to think about it. I just couldn't. I thought about the other families that I knew were having tough times in their fight against neuroblastoma at this moment. But all I could think of was just spreading some of my joy to them. I was incapable of thinking of anything else. That time, that hour and a half yesterday afternoon, there was just too much joy and peace. I could not fit even a minuscule amount of pain or fear in my heart. I don't know what caused it and I don't know if it will ever come back again but I hope it does. This road I travel on is very strange. At one moment I feel absolute terror and then the very next absolute peace. It is both great and horrible, peaceful and terrifying, good and bad, and incredibly unique. I am continuing to learn about and feel emotions on an entirely new level. It pains me to think that I have gone through a third of my life only experiencing a third of my emotions. Whether it was because of a protection mechanism that regulated my feelings, or because I was too macho, or believed I was too much in control. I wish I had fully experienced my past. Ironically, I feel more in control of my emotions than at anytime in history. I don't know what it is but it begs some interesting questions. Is it being a parent that gives you the capacity to feel at that level? Is it that your child has cancer? Why have I changed and what does it mean? I still wish from the bottom of my heart and soul that this never happened but as always there seems to be a silver lining to this black cloud. It certainly isn't enough to make this journey worthwhile but at least it is some good. I will find more. I have a purpose.
PS. After I had finished my time with Sydney yesterday afternoon I took the opportunity to look in the box. I am sad to say that my daughter has little decorating sense and scotch tape is not an adequate decorating item. I wonder what she was thinking.
On another note, I want to thank you for the responses yesterday. They are incredibly helpful. It is very interesting to see what you think. Keep writing.
6:10 AM 9/22/2003
It is another action packed day. We are off to the clinic at 8:30 for a check up and to get her blood results. Once again Nurse Lynley and I will be drawing the blood from home to speed up the process. We hope Sydney's counts are on the rise, it would be a good sign for us to be able to go back into the hospital on Thursday for the next round of chemotherapy. If you are playing along at home, the over/under on Sydney's Hemoglobin is 8.2. Wish us luck.
Sydney really did well this weekend. We spent much of the time at home but we did take the occasional jaunt outside. We even made a trip down to the pond to feed the ducks, one of Sydney's favorite activities. Unfortunately, the ducks and squirrels were unimpressed with our food offerings but two of whom made an effort to follow Sydney along the winding pathway. It was strange that they would not eat but that they continue to swim along the bank to follow Sydney. Anyway, her color is starting to return and physically she seems to be improving. Her nose runs constantly which we have heard is common with kids that are on her protocol. I never thought I would turn into my mother, especially me ( I was hoping to turn into my dad, no offense mom, he is male), but I am constantly chasing her around trying to wipe her nose. When I say constantly I mean: drip.....drip...drip.....drip....etc. It is constant and continuous. My daughter is the never-ending wellspring of snot. I still love her. I will be in touch later.
10:30 AM 9/22/2003
I am starting to realize why they actually take blood tests. Even with our extensive experience and dedication to Sydney's blood cells we are unable to accurately predict her counts. In fact we are not even close. For those of you that guessed Sydney's hemoglobin, it was a whopping 10.2. I guess we will just have to stick with the old method of taking blood draws until our telepathy improves.
It looks like we will be reentering the hospital on Thursday. We will have a 12 hour creatinine clearance which unfortunately means the placement of a Foley catheter. OUCH!!! But on Friday we should be starting our fifth round of chemo and our last prior to surgery.
I am still trying to do my best to respond to all of the email that you have been nice enough to send me. I continue to look for more. When I get a chance a will let you know what I found out. So far, it has been quite interesting. With this information we will make a difference. I have a purpose.
4:50 AM 9/23/2003
Sydney continues to improve. These times, the days right before we shock her system one more time, are perhaps the most bittersweet. Everyday she gets more opinionated and more active. These are the days that we relearn what it is truly like to have a two year old running about the house. It is a shock to our system every time. You would think that we would learn by now. I sometimes wonder if it is harder raising a sick child or a healthy one. I am right in the middle of it and I wonder how parents ever survive two solid years of toddlerhood. I have written many times in my diary that, despite all of the fear in the beginning, life slowly becomes a new version of "normal." I think I once used the analogy of how one's perspective changes over the time that a parent anticipates changing his/her first diaper until they have changed their last. In the beginning many assume it is the most disgusting thing you could possibly do and then very quickly it becomes second nature and never requires another thought. Much of what we go through with Sydney is the same. At first, it seemed unfathomable but, day by day, it became easier and easier to care for her many medical needs. And then once we adjusted to the life of caring for a sick, somewhat subdued child, the two year old makes her glorious appearance. We start running and running and running. It is both refreshing and exhausting. I guess once again it is perspective but another lesson I am learning is that "normal" two year olds are strange little heathens and I am amazed that any parent ever survives. Boy, I love her.
Over the past few days I have received literally hundreds of emails answering my question: Why fund neuroblastoma research? I not only posted the question here but I also asked this very same question on the Neuroblastoma newsgroup and several other places. It has been a fairly time consuming undertaking but one I have enjoyed tremendously. I still continue to do so. I have learned from others in whose footsteps I stand. I have learned from parents walking a parallel road in their quest to find their own answers and, of course, I have heard from family, friends, and many that I never knew before this experience.
I don't know exactly what I expected to see and hear before I asked the question but I can say it would have been far less than I received. I don't mean in volume of email but in quality of sentiment. Several told me of their journeys. For some it was their own journey with cancer, for some it was a journey that they had with their child, and for many it was a journey that ended in tragedy. All of whom had their own messages and perspectives. I talked to fund raisers and political figures, florists and construction workers, adults and children. It has been truly a diverse group of visions and opinion. I will discuss many of the stories and lessons over the days but one of the most common reasons that people found to give to a charity was based on a personal connection. I have found this to be true in my own life as well. But much of the reason that we give, that we make a difference, is because of the feelings and emotions we associate with a particular cause. Many of the writers felt touched by our story and that was their reason. Some even thought that this "Dad's Diary" would play out well in book form. In fact, I had some offers of help. I find the idea strange and the only vision I have concerning that idea is my sophomore English teacher turning over in her grave. In fact, I think she might have said that she would if anybody could ever understand a word that I had written. She, obviously, did not have the appreciation, the admiration, for commas, that I do. But, that really is not the point. The point is that people become motivated to take action because they become aware. I know that has been true for me. I can't speculate as to what I would do if I weren't in the position that I am today. I don't remember what life was like before this and I don't recall how I thought. I now know to much and I can't turn back. For me, I was educated. I learned about pain and joy and to feel my emotions. I have now walked on the other side and I feel. That is why I am so motivated to do something. It wasn't that I didn't care. It was that I didn't know. I never felt it. I guess it is all part of growing up. Maybe I was naive? But at some point in life everyone hits a bump or has an experience that changes their life and their direction and it becomes real. To make a difference in the world of Neuroblastoma I will have to make it real. I have a purpose.
CAN'T STOP THE LOVE
6:30 AM 9/24/2003
Last night, Sydney was feeling well enough, and we were feeling brave enough, that we actually went out for our second dinner out on the town since Sydney's diagnosis. It was absolutely exhilarating. I had forgotten how nice it was to go out to dinner with family and friends. There were some small problems, however. We invited Truman, Preston and their family along. Lynley and I figured it would be quite a while, most likely months, before we would be able to do it again. So, I succumbed to thought of having Sydney spending supervised time with the disease-ridden, hormone over-producing, little scoundrels. After a thorough medical examination and health questionnaire, I was prepared for an evening out with little Truman and his 1 year old little brother. Now, there was way to much hand holding and hugging and all of the things that a father would disapprove of, but Sydney was happier than I have seen her in as far back as I can remember. We went to Joe T's, which is a large Mexican restaurant with an outside dining area which must cover the length and width of a football field. It is covered in flowers and trees and fountains can be found every twenty feet our so. There are nature paths around the many garden patios and even a pool in the middle of one. Sydney and Truman, who is five, held hands as they frolicked through the garden and I could tell by the look in her eye that these moments were some of her happiest as well. I guess their is a point in every father's life when you have to let your daughter love another man. It was funny and great and happy. I have decided that I will let Truman date my daughter, of course, they won't be able to go without me until Sydney is thirty. I guess I will have to work on my frolicking. We have one more day before we go back into the hospital. Lets hope it is a good one.
I have received so many great emails over the last few days. There were a couple that stood out, that addressed the bigger picture, and today I am focusing on them. I think I will use their words as they were better than any that I could conjure. I share them with you because I think they have an important message for parents, family, and friends and it is certainly a concept that I want Sydney to understand.
"The pebble you throw into the waters of eternity have a way of causing ripples far beyond your lifetime, so you may never fully appreciate the effects of your efforts. Someday, some child whose life was lengthened by newfound treatment may well do something that will forever change history."
"The fact that one has been blessed with healthy children and never had to face the painful growth you have....THAT is a reason to fund research. As acknowledgment of the blessings we have received and as a show of compassion for those who had to walk that long, dark, and lonely road.....THAT is a reason to fund research. Because one HAS walked that road and has a child who survived............or has buried their child, the heart of their very heart..........THAT is a reason to fund research. Because we are all God's children and we are to love one another. Because, whether we knew you before or not, we are united in suffering........THAT is a reason to fund research."
"My first response to your question was "there but for the grace of God, go I." You fund research because the next child to receive this diagnosis might be yours, or your grandchild and then it's too late for you to throw your own money at it and you'll be praying that someone else funded research in the past."
Names withheld due to the fact that I did not ask for their permission and I viciously stole their words and reproduced them here.
I have been inspired by your many letters. I will make a difference. On October 1st I will make a stand. I have a purpose.
WE'RE OFF TO SEE THE WIZARD
5:40 AM 9/25/2003
Yesterday was a great day. As expected right before we enter the next round of chemo Sydney is doing wonderfully. It truly feels like a boxing match. We send her in to fight and fight only to let her regain her strength and go back and do it all over again in the next round. I guess the bell has rung. Sydney was very active all day and our neighbors were nice enough to craft a wonderful homemade dinner for us. We ate and ate and ate. Sydney loved it too and I think she ate more than I have ever seen. I don't know what the equivalent to catnip is in toddlers but whatever it is it was certainly present in the mashed potatoes. Sydney ate more potatoes than Jay, Lynley or I together. I will have to get the recipe to figure it out. We may have just discovered the next new wonder drug. It will be interesting to see if she loves them as much once the effects of the chemo sets in.
We will be going back to the clinic at 8:00 AM this morning. After a few quick tests we should be admitted. She will spend much of the day with a Foley catheter in place to gather a 12 hour urine sample. If all goes well we will be starting Cisplatin and Etoposide in the middle of the night. I hate those drugs. I will be in touch as I have time.
7:00 AM 9/26/2003
Well there was a slight change of plans which, in all honesty, was probably for the best. Due to the popularity of the third floor oncology department our reservation was overbooked at the luxurious Cook Children's Medical Center Resort and Day Spa. It wasn't until 9:00 PM that the festivities truly began. It was nice in the since that Sydney had several hours to play before beginning another stay at the hospital. Sydney is doing pretty well considering she was woken at 11:00 PM for the placement of a Foley catheter. She has slept pretty peacefully. It will be removed at 11:00 AM and then the fun should begin. Please keep her in your prayers.
For me, yesterday, was a mixed bag of nuts. I think it is related to the drugs that Sydney will be taking but I certainly had an uneasy feeling. Most days it is manageable and I don't actually physically feel the effects of the fear and anxiety, but yesterday was an exception. It is really strange. I can be going through my life, happy to be with Sydney and Lynley, caught up in the moment, and enraptured with a sense of peace -- and then it hits. My heart starts to race. I start to feel every breath and my body seems to tingle. It is almost like an allergic reaction. In many ways it is. My body and subconscious mind are rejecting my reality. It just hits, fear and impending doom. I feel scared and out of control. It takes a steady breath and the thought that Sydney is still here to regain my composure and bring my mind and body back to peace. Sometimes I can just look in her eyes and in Sydney's words daddy becomes "All better." This reality, our life with Sydney, that has seemed to become so normal on the outside, rears its ugly head and shocks my body into acceptance. Like I said, it doesn't happen all the time. I don't know that a parent would survive if it did. But it is evil and I don't like it. I hope today is better. It must be. I have a purpose.
11:40 PM 9/26/2003
Sydney has finished day 1 (of 4) of her fifth round of chemo. There were some minor hiccups but, for the most part, she went through with flying colors. We received some frightening news just before we started the etoposide. The 12 hour urine test came back from the lab showing that her creatinine level was far to low. This can be a very serious condition. Doctors were called and the lab results were rechecked. Luckily the sample was computed over a 24 hour time period instead of 12 hour period and once recalculated Sydney was considered perfectly normal. There were a few tense moments trying to figure out what was going on but, in the end, it really was a small bump in the road.
A funny thing about Sydney: on these particular drugs she puffs up like a balloon. Her face gets extremely swollen and she looks a little like the girl that turns into a blueberry in Willy Wonka's Chocolate Factory (minus the color, okay whiteberry). It is always a little worrisome but it has become a fairly routine condition. However, what seems to make it funny is the times, like today, when she adds the finishing touch by playing "Karaoke Elmo." Sydney has a toy that lets her sing along with Elmo through a plastic microphone. So, this afternoon Sydney sat in her bed, carefully holding her microphone to her mouth, bloated full of chemo, singing nursery rhymes with Elmo to the delight of her parents, nurses and anyone walking up and down the halls of 3 South. She only understands about half of the words but she sings the entire song anyway. Her mannerisms and gestures are the best part of the entire show. She has got it down pat. She will provide the correct gestures (hand movements that make sense with the song) but totally miss the words. I really don't mean to brag, really! At this point she more closely resembles a bad Las Vegas lounge singer than a true diva. Regardless, she has a wonderful time and, for me, everything is right in the world. They say laughter cures all and I am tempted to believe it. That baby girl is truly my strength.
On another note, thank you for the continued responses. I actually received a thoughtfully composed answer from Sydney's pediatrician. Now, if I could get three or four more pediatricians to agree I could have a national slogan for neuroblastoma research -- 4 out of 5 pediatricians agree, neuroblastoma research is important. No?? I think that slogan might have already been taken. I think I will stick to what I know best. I have a purpose.
It is late, have a good night.
CONSUMED AND THE EQUALITY PRINCIPLE
4:20 AM 9/28/2003
I have spent the last few weeks consumed with the thought of doing something. I have a need to create change. It is something that I can do, something that I can control, and it makes me feel like I am doing my part. I haven't spoke of this much but it is something I have wanted to get off my chest. I am starting to realize that the movie I spoke of last week, "The life of David Gale" has had more of a profound effect on me than I had let on. I think I identified with it so much because of David's love for his son. Before the madness and the actual story plot really got going there were several scenes with he and his son. There was such love in his eyes. The moments that he spent with his son, for some reason, were just incredibly powerful for me. So much, that the rest of the movie was not about the death sentence but, for me, about the love of his son. Yes, I know, I missed part of the point, but in the state that I am in, that was the connection I made to the movie. I identified with his love and absolute joy with his child. It was very personal and I felt like it was me. The moments spent were silly and unaffected by anything in the outside world. It touched my soul. Even in the process of making his life have meaning, for me, it was about his son and his legacy. I can't say it any other way, I was touched. I don't know if other people are touched by movies in that way but it was one of those "life moments" for me. It was what got me thinking in all kinds of directions. First, I thought immediately that I have to make that impact in my life. Then, I began to justify it in my mind. I came up with all kinds of reasons why I needed to make a difference. I came up with the "equality principle" which states: For my life to have true meaning, for me live the rest of my days thinking that I had met my match and made the necessary impact and left the world better than I entered it, I would have to do enough good to make up for the bad that I or my loved ones had experienced. I know it sounds wacky, but hold on. I need to meet all bad with equal and opposite force to go through life even. I took Sydney's cancer as the first battle. If I am to make sense of Sydney's cancer? If I am to meet it and to rise to the challenge of giving my life meaning? I must produce enough good to overcome the bad of Sydney's cancer. The actions that I take must be more devastatingly good to the world, to the families, to the heartstrings of anyone that has read our story than the devastatingly bad that has occurred to my daughter. I know it is not rooted in complete sense and in some ways it is if the old Mark has returned. But that, my friends, is the way I have coped. Healthy -- NO. I could very easily set myself up for devastation. This is where the other Mark comes in and rationalizes the situation. If I do something with noble intentions that produces a modicum of good then I have started my job, even if it falls well below my expectations. I have begun to move in the correct direction and I am on my way to meeting my goal. There you have it folks, the thoughts and ramblings of a dad who is still trying to make sense of this ordeal. I will continue to try, to love my daughter and my wife, and bring the world back in balance. I have a purpose.
6:50 AM 9/28/2003
Sydney has finished day 2 (of 4) of round five of chemo. Last night she was still incredibly active and fun to be around. Minus a couple of two year old outbursts. Yes, she continues to have her own opinions and is not afraid to express them. She slept comfortably throughout most of the night but has woken this morning with pain in her abdomen. "Mama, Daddy, belly hurt." She is now sleeping uncomfortably. We are concerned and trying to figure out the source and make her comfortable. I will let you know as we find out more.
8:30 AM 9/28/2003
Sydney has received another dose of Zofran (anti nausea). I have interrogated her thoroughly and she is no longer in pain and would appreciate it if I would not bug her about it anymore. Of course, as she said, "Daddy, go away, Sydney fine." Little twerp!!
HIDING FROM THE WORLD
6:20 AM 9/29/2003
Sydney is continuing to tolerate this round of chemo very well. One more day of Cisplatin and we should be going home tomorrow morning. Her appetite and intake of fluids has decreased but at this point I think it is because her appetite is being artificially suppressed by all of the IV fluids. The anti nausea medication continues to work and although she is a little less active she is in good spirits. We spent most of the day yesterday hiding under the pillows on the makeshift bed/couch that Lynley sleeps on each night. We hid from Mommy. We hid from the nurses. We hid from her stuffed animals. We hid from her shoes. We hid from just about every inanimate object in our hospital room here on three south. I am guessing that I spent a good four hours yesterday hiding from everything she could imagine. Unfortunately, I also hid from the Dallas Cowboys football game, but I suppose that was okay as I am yet to see one this year. I assure you that hiding from the world is a much better alternative than watching the torturous, continuous loop of Bambi that usually plays on our television. I had a great day with my little angel. I enjoyed hiding from the world because it gave me time to sit with my daughter and reflect over the past three months of our lives.
I guess it really depends on my mood or, perhaps, which Mark is out at a particular moment but it was really nice to have the time to reflect. I am very lucky to be blessed with Sydney. As hard and ugly of a road this has been at times I am continually amazed by the sparks of goodness that have come flying out of our experience. It was just a little over three short months ago that our lives changed forever. As I reread my diary and digest my words for perhaps the hundredth time I am amazed by where I have come from. I know this story is truly about Sydney but I think she should know what she has done for her father.
Sydney, my dearest little angel,
As I sit next to you early this morning and watch you sleep, I realize that you don't know what an effect you have had on your Daddy and the hundreds of others that follow you and pray for you everyday. As you go through your life much of this will be forgotten. You will experience much happiness and sadness, much joy and pain, and many struggles that others may never endure. Perhaps, at some point, you will wonder: Why me? Perhaps you will be looking for meaning in your life and someday you will be looking to find out what your life really means. Well, when you are searching for answers let me remind you that you have accomplished in just two short years far more than many have in a life time.
Before you were born I always wanted to be a good daddy. I was consumed with work and playing golf and living my life. I was motivated by my own wants and needs. I was a fair husband to your mother and an acceptable friend to many. My priorities were my own and my needs were supreme. Then, you came along. My world was flipped around. I know longer craved the newest car or house. I no longer cared if I made the next golf round. I was happy to be with you and your mommy as we enjoyed our isolated lives together. I became aware of those around me and I was no longer one but a family. My goals changed. I was still tucked inside my own self- centered world but now, at least, my world was expanding. I have always loved and respected your Mommy but it was you who taught me how wonderful of a women she was. I hope as you go through life you acquire many of her qualities, many of which I was never prepared to bestow upon you. I learned to appreciate your Mommy and everyday I valued her a little more. We were always good friends but through these times we became much more. I still had a lot to learn.
When you were diagnosed at the end of June in 2003, it felt like my world was falling apart but it was the experience that changed my life forever. I knew that I had to find strength for you and your Mommy and I did. I found it through you. In those early days I learned many lessons, many of which you will find in this diary. I learned to feel both happiness and sadness, feelings that I always thought that I had understood but had never been defined until that moment. Through your struggles, I learned to appreciate those outside of our family. I had never known the true values of friendship and compassion. It was your life and your journey that finally shocked me into understanding. Today, I am a better friend, a better shoulder to cry on, and a better human being. I also learned very early on that my life no longer revolved around me. Now that I had the capacity to identify with others, I finally understood that there was more to life than my own little world. I also learned courage from you. No matter what was happening to you at any given moment your were complacent knowing that you were loved. I felt the same way and by watching you I knew I could get through anything with the love and support of others. I am sad to say, but I never knew that. Sydney, you have inspired me and my life now has purpose and meaning. As we have walked down this road together you have inspired 100's of families and I am sure that you will inspire many more. I have received many letters, notes and emails telling me what a profound effect you have had on thousands of lives and one day I will share them with you. Over the next two weeks the world will begin to change and it is all because of you. You don't know this yet, but you will save thousands of lives. It is you that have given me love, strength, courage and compassion, and it is you who have given me a purpose. I have much more to share with you and in the coming days I will. I just wanted you to know how much I love you and I want to thank you for giving my life meaning.
I will love you forever, I will love you for always, my baby girl you will always be.
Sleep well my princess,
7:00 AM 9/30/2003
A DAY OF REST
There was less singing today and the pillows stayed in their place on the couch. Sydney struggled with nausea early in the morning and her activity level was obviously affected. She was irritable as well, but then again, that is to be expected. She tolerates the chemo and life in the hospital much better than I would. There were flashes of activity and even a couple of jaunts through the corridors of 3 south but she would tire easily and Lynley and I would almost always end up carrying her back to the room. It was the first time, since the beginning of this mess, during the first round, that we have truly seen the chemo take an effect. We have been very blessed thus far and have come to expect a smooth hospital stay even at such a medically demanding time. I guess that is just another part of the roller coaster ride. I spoke a few weeks ago about the chemo starting to take its toll and I guess this is just another part of our journey. Sydney still knows that she is loved and is always content to be by our side. It isn't that Sydney is not doing well it is just a shock to the system. I would think by this time I would be better prepared. It just pains me to see her sick. I am happy though. A hug still seems to make it "all better."
At about 5:00PM last night the last drop of chemo hit her system and I am glad to see this round come and go. I will not have to see a single cc of Cisplatin hit her system. Late in the day, the benevolent Dr. Eames made an appearance. It had been a while since we had seen her as she had been on a much needed vacation. It was wonderful to talk to her. She is my rock. She keeps me fair and balanced. She never offers a single guarantee (I don't think there are any in Neuroblastoma) but somehow I always feel confident and reassured after she leaves. We talked about the upcoming surgery and are starting to schedule all of the events. It looks like we will be spending Halloween in the hospital. I guess I will have to put a note on the door of the house to let all the kids know where to come. Sydney really delights in being the giver of candy rather than the receiver.
Yesterday, was yet another learning experience for me. As I sat beside Sydney, I corresponded with many parents whose children have been struck by this disease. I talked to a mother in Atlanta whose child will be going to San Francisco for a surgery about the same time as Sydney. I talked to yet another mother from the Northeast who was going through the first round of Monoclonal Antibodies and caring for her son in the hospital. There were perhaps twenty parents in all. All of which had different backgrounds and stories. All of which were struggling in the battle against neuroblastoma. I learned more than ever that we are not alone. There are hundreds of heart wrenching stories out there in this world. There are parents, right now, sitting in my shoes on a computer out there in Neverland trying to make sense of this whole ordeal and too many children who are fighting a battle they never should have been in. It is amazing to see the similarities in our journeys. I am touched by their stories and moved by their words and perhaps that is another gift from Sydney. I can tell you this, something needs to be done. The suffering is simply too much. These kids need an answer and I have a purpose.
Today I will take care of Sydney and tomorrow we will change the world!
4:20 PM 9/30/2003
WE HAVE ESCAPED
We were discharged from the lovely Cook Children's Medical Center and Day Spa. As always, it was a delightful stay but we are glad to be home. Sydney is still a little on the puny side but she is very happy to be home.
4:40 AM October 1, 2003
A CALL TO ACTION FROM A PARENT WITH A PURPOSE
It is October 1, 2003, a day that will live in the hearts and the memories of Sydney, Lynley and me for the rest of our lives. Today is the day that will mark a significant change in the world of neuroblastoma. With your help we will level the playing field and give research the necessary boost to obliterate this human tragedy from this earth. I plead with all of you, that today you help our family -- and therefore the families of Neuroblastoma victims all over the world. This will only work once and this is my best hope at making a truly significant impact while I still have the opportunity to do so.
Today I officially launch the "Lunch for Life" campaign, an ambitious fundraising effort to raise ten million dollars in just ten short days. I ask you to make a donation to the Children's Neuroblastoma Cancer Foundation in the amount of five dollars - just the cost of lunch for one day - right now. Please do it for Sydney, for Lynley and me, for the thousands of parents crying for a cure, or do it for the thousands who are yet to be diagnosed. Do it because you are our friends and family. Whatever reason you find. It can be because of the statistics - because neuroblastoma is greatly under funded. Do it because of our story. Do it because of somebody else's. Do it for any of the reasons that we have discussed over the past few weeks. Do it as a "snooping" tax for reading my diary. Do it so that they can afford to buy a book to improve my grammar. Whatever the reason you choose, please do it, and do it now. Think of it as giving up one lunch this month for a cause that is important to some one who is close to you. Or better yet think of it as paying five dollars to be a part of changing history. It is a small price to pay and we will save lives, precious children's lives. Hopefully, five dollars is an amount that no one will miss but that could make the difference in thousands of lives. If you have decided that this is your cause, that you are inspired to do more, then please give now. Give up one lunch a month for the year, for the rest of your life, whatever your tolerance is to give to a cause that you believe in. I then ask that you call 5 of your best friends. Friends that you can trust and people that will do this favor for you as you have done for me. Give them the information, tell them the story, inspire them and ask them to do the same as I have asked of you. Ask them to call five of their friends and pass on the challenge. This will only work, it will only make the needed impact, if we go ten levels deep in this web of giving. If you can find more people to give, great, if not that is okay. Some of you will tell hundreds and for that I am truly grateful, but no matter what, I need you to be diligent. Please follow up with your five best hopes and keep the giving growing. We have to make sure that we inspire our five friends to follow in our footsteps. Pick five friends that you know will do it and that will continue the effort. Follow up with them. Use this as your opportunity to stay in touch with someone that is close to you. Everybody must inspire the group below them and follow up. I know it is work. I know I am asking a lot. But this could do it. This could make the difference today, right now. This could be the single effort that does it, that produces the cure. Honestly, for me it would be worth the five dollars and five phone calls just to see if the theory behind a chain letter actually works. Nevertheless, I implore you. You have asked how you can help. Help me change the world over the next 10 days. Your donations will go to research to cure neuroblastoma. It goes to an organization that is lead by parents and medical professionals dedicated to the cause whose sole purpose in life is for the love of their families, these children, and the cure of neuroblastoma. It is a tax deductible contribution to you. You can give directly to the CNCF here (http://www.cncf-childcancer.org), it is a secure web site and a preferred method to make your donation.
You can make a donation on the http://www.LunchforLife.org website.
You can mail your check to this address:
P.O. Box 6635
Bloomingdale, IL 60108
You can fax your credit card donation to: 1-630-351-2462
You can call this 800 number and give your gift by phone 1-866-671-2623
if they are busy you can make the donation to my office at this number. 1-877-795-7948
if you want to call me personally you can make your donation through me. 1-817-846-6085
Whatever method you choose your donations will be going to benefit the Children's Neuroblastoma Cancer Foundation and they will make a difference in children's lives. In the not to distant future it will be your gift that allows a doctor to sit down with a family and say "Your child has neuroblastoma, but it is okay, there is a cure." We can do this. It isn't only about the five dollars, it is about your five friends. That is the tough part, but it will be what makes the difference. You hold the future in your hands, please make it a good one. I will be posting our fundraising results on this website on a daily basis. You will know how much of a difference your participation has made. Each day the next level of friends should be taking the necessary steps to make the difference but it is up to us, right now, to get the ball rolling and ensure that it works. You are my five friends. Let's take a stand together. From the bottom of my heart, I thank you. I thank you for your prayers and well wishes and I thank you for helping me change the world. It is my daughter who has given me the strength and courage but it is your kind words that have inspired me. We all have had a lot to learn from one precious little girl. I thank you all for my purpose. We will make a difference.
A DAY OF HAPPY FACES
5:20 AM 10/2/2003
Yesterday was exhilarating. I received hundreds of messages and my inbox continues to stay full. I am completely amazed by the wealth of kind words and well wishes that people have sent to Sydney, our family, and the many families stricken by this horrible disease. One of the interesting things that has come out of this new found mission in life is overwhelming support, not only from Sydney's family and friends but from many around the world. Several of the families who have fought and continue to fight their own battles with neuroblastoma have joined us in arms in an effort to get the word out and make a difference. We even have a family from Australia who has offered their help. Someday I will have to explain to Sydney how ironic that is. We have heard from people all over the United States and the donations continue to roll in. It is truly an exciting time in our lives. Thank you for all of your support. I ask that today that you follow up with your five best hopes. Inspire them to contact their five friends and make a difference in the lives of all of these children and all of the ones that will follow. We have completed day 1 and now it will be our friends who carry out our challenge. We will save lives and bring many smiles to the faces of thousands of these children. Thank you for all of your support.
Yesterday, the CNCF received a little over $4,500.00 in donations. Of course, this does not include those who decided to mail their donations in. I couldn't be happier. That is an incredible amount for just the first day. I hope beyond all words that today the donations continue to roll in. I am in disbelief that there were so many people that decided to help on the first day. I never realized how many read my diary. I guess I will have to start watching what I say.
Sydney is improving but she still spent much of her day lying with me on the couch. I don't really know if Sydney realizes what is happening with "Lunch for Life" or if she just thinks I am really busy at work. As I sat with her on the couch yesterday we kept hearing a sound from the other side of the room. My email application on my computer makes a dinging sound whenever a new email arrives. Each time a new email would hit my inbox and Sydney would hear the sound she would look up at me and say "Happy faces." She must have done it over fifty times yesterday afternoon. Sometimes she would crawl off the couch and go over to look at my computer that sits on our coffee table. She loves the noise because she thinks that somebody is sending her happy faces. One of the things that Lynley and I do on the computer is use the little icons in our instant messenger to make happy faces for Sydney. Whenever a new instant message arrives it makes the same sound so Sydney always assumes that daddy is getting happy faces. It is one of her favorite past times and she loves to sit at my computer and watch the little faces appear. People at work even start their messages to me with happy faces in the hopes that Sydney will be peering over my shoulder. When she grows up I wonder what she will tell everybody that her Daddy does?
This morning we will be going back to the clinic. I believe it is time for a blood transfusion for Sydney. We are getting better at being able to spot the signs but I am not going to step out and guess what her blood work will be. We know how poorly we did at guessing last time.
THROUGH A CHILD'S EYES
6:30 AM 10/3/2003
Once again we have been fooled by the effects of Cisplatin and I have proved to be completely incompetent at predicting Sydney's blood counts. For the second time in a row Sydney's blood counts have continued to increase immediately following her round of Etoposide/Cisplatin. This is both good and bad news, really. It is nice that she is tolerating the drugs well but, more than likely, it means that it will take her bone marrow a longer time to recover. Our oncologists continue to be very pleased with Sydney's progress.
Sydney sent us for a little shock yesterday and we are still a bit worried. One of the many side affects from Cisplatin is hearing loss. Yesterday afternoon Sydney became much harder to understand. Both Lynley and I were quite shocked at our inability to translate her words. It is something we have been prepared for but when you see these little things happen it still takes you for a loop. We are hoping her tongue was tired or perhaps she was a bit sleepy, but only time will tell. I still maintain that I will be able to shout "I love you" loud enough to be heard. It is just something that pains me to see my daughter endure. It may seem kind of sad and it may seem like it could be hard for a parent to accept but I would gladly trade some hearing loss for the privilege of sharing her life. Another perfect example of why I must do something. Another reason we must find a cure. And another reason that I have found my purpose.
Day 2 of Lunch For Life has been incredible. I am now hearing stories from across the globe. Many parents who walk the road with us in parallel lives are joining the cause. We are on the radio. We are in the newspapers and people are starting to take notice. I must admit as I thought through this plan in the days of late September I wondered, "With all of the wonderful insights that I have gained from my daughter and this experience, was it my newly regained senses of innocence and naivety that were leading the way?" As I looked at the world from my daughters eyes all I could see was love and hope, kindness and joy. Would other people see this as well? Would her message be clear and would people understand? Have their eyes been opened by this sweet little girl or have the remained closed? Will they fall victim to apathy and indifference? Before this nightmare would I have stood up or would I have continued to let these lives fade away? Would I have made a difference? Would I have taken a stand? For now, I am content to look at the world through Sydney's eyes. I am prepared to believe that this is important enough of a cause and I am very prepared to believe in this miracle. Who wouldn't give five dollars to save the lives of so many children and spare the pain of so many who follow their journeys.
CHEETAHS DEFINITELY ARE NOT TIGERS!!!!
5:30 AM 10/4/2003
What a great day. I honestly spent much of my day with tears in my eyes. I know I am a grown man with big, tough man hormones and not supposed to fess up to such things but for once in a long, long while I cried from sheer joy. I have been truly moved. The wealth of support is greater than I had imagined and the notes, emails, and phone calls have touched the heartstrings of our family. I want to share with the world my joy and thanks yet I still can not find words that are powerful enough to carry my message.
In the few short days since we offered our plea to the world we have heard from thousands. More importantly their words, their well wishes, and their lunch have not only touched us but many of the families that share our battle against neuroblastoma. For many hope has been reignited and all have found purpose. As the days have gone on more and more families have joined Sydney, Lynley and I in our cry to the world. Thank you for giving us reason to believe and the gift of change. There are now over 30 families across the world who have joined the effort. We are in papers across the country and we are even appearing on the radio. In fact, I was touched yesterday by a radio station in Chicago that carried our plea and the story of one of the many families. In many cities our stories are actually appearing on TV. It is truly amazing. You are affecting people. You are creating change. You will save lives. Thank you for your help and support. It is important that we keep fighting on and we keep spreading our message. Our five friends must continue to follow through, but it is working.
Sydney still had nausea today but was feeling better. So well, that we took her to the zoo in the afternoon. As always she had a wonderful time. It was so normal. I love to be able to take her to do her favorite things. By the way, if you ever are sitting and talking to Sydney and a cheetah walks by, call it a tiger. I am still quacking in fear from the wrath she bestowed upon me for spreading such lies. I offer this as fair warning.
I am happy to say that her speech has improved a bit and we are hoping that she had just been tired from a long day. I understood most every word that came out of her mouth yesterday even though most were typical two year old demands. I never realized that the word "please" could be used in such a demanding way. It really is funny. She says it with such intensity you would expect a four letter word to follow. Regardless, I am happy that she asks with such polite words and I am obliged to follow her direction. God love her.
IT'S REAL. WE JUST CAN'T SEE IT.
5:45 AM 10/5/2004
Sydney was about the same yesterday. DeeDee visited from Dallas and they had a great time reading books and playing in her playroom. It was obvious that Sydney would tire quickly but, all in all, it was a great day with the family.
Another day has arrived and as I sit in front of my computer this morning I am at a loss for words. I had high hopes this morning of writing an entry to talk about all of the wonderful things that have transpired since Lunch for Life began. But instead, I find myself thinking of a little boy and his family who are facing a very tough time right now. I have been told by his mother that he will soon earn his wings. In the world of neuroblastoma all of our kids are angels but far to many of them become real. As I read this mothers words I can feel her pain. Although I can only imagine the fear and anguish that she has gone through in these last few weeks I know I am not the best to offer her comfort. I know there are thousands of parents who will reach out to her because, unfortunately, they have walked that road before. It has been a tough month for the parents on the neuroblastoma group in which I participate. Many of the families that I have come close to have lost their little ones. Although I don't know many of them personally, I see their words fly by my computer screen almost everyday, I read their websites, and when I can find the words I do my best to comfort them. And I know that right now their is a family out there somewhere in the world who is losing the battle and there is just nothing I can do about it. I can't fix it, I can't make it go away, and it hurts. So, as I take advantage of the fact that this is Sunday and I say my prayers, I offer my first for the comfort of a loving, bright, generous child whose strong spirit should be enough to keep him here on earth but too soon will be an angel and the next for his loving Mom who, like everyone one else, hates this damn disease and is searching for answers. May God find you both peace and strength very soon.
After thinking about this family it seems so simple to me. It makes so much sense. I would gladly give up my lunch to save his poor life and I think I would give them up for the rest of my life if I knew it would make a difference. I think everyone would. I wish I could make that deal with God this very minute. Wouldn't that do it. If I could only stand right next to this little boy, holding his hand and barter my lunch to save his precious life. I don't mean to be preachy and this is not a sales pitch. I have to make sense of it in my own mind. It is so real in my daily life and I have to make the connection. Had I started lunch for life ten years ago. Had I known about these many childhood cancers, had I gave up my lunch and made a difference then this young little angel would be playing on the playground instead of losing his life. That is my problem with lunch for life. It is a great effort and it will save thousands of lives but I can't hold up a child's hand and say this is a life you are saving. I can't definitively say that if you give up your lunch today you will save this child's life. I can only say that you will save a child's life in the future. I don't know who it will be. I don't know where they will be from, but there will come a day in the future that we can stand up and say we cured cancer and it was your lunch that did it. Is that enough? Will that make the connection? Will people understand? Will they feel it that moment? I know people care and I know people continue to donate and for that I am tremendously thankful but what will make the difference to the world. What will convince millions (because that is what we need) to take time from their busy schedules and daily lives to give up one lunch out of their lives for these kids. I know that if I could walk through the streets with a child in hand and said to everyone I saw, "If you give up your lunch today you will save this child's life." that they would do it without exception. So tell me, how does a father in Texas get that word out? How do I make it real? How do I convince the world that it is that simple? What do I scream from the rooftops? God give me the strength, the courage, and the words. I have a purpose.
5:20 AM 10/6/2003
I will write more much later in the day but for right now there is much to do. Lynley has a doctor's appointment at 8:00AM. As it is Monday, we will need to take a blood sample from Sydney down to the clinic at 8:30 AM. I am happy to say that at 10:00 AM we will be interviewed by ABC for a spot on Sydney and "Lunch for Life". At 1:00 PM we will have an oncology clinic visit with Sydney. Then, later this afternoon we will be interviewed by a couple of different reporters. To say the least it is a busy time. I can't believe that this is coming together. We now have over 50 families that have joined our quest nationwide and the donations are really starting to roll in. We just might beat this thing yet. Please remember to keep checking with your friends and keep spreading the word. We can do this. We will save these children's lives, but it takes all of us to do it. We have a purpose.
11:30 PM 10/6/2003
I MEANT TO SAY -- REALLY, REALLY BUSY DAY
A lot transpired today and it is as good a time as any to update my diary. Lynley went to the doctor this morning to get "Rice" a check up. I am proud to say, we have a bouncing baby.............heartbeat inside of her. We were hoping to find out the sex but we just weren't quite far enough along. Everything seems to be going well and once again it is a weight lifted off of our shoulders --- until the next visit.
Sydney was in rare form today and I don't mean that in a good way. She was clearly miserable today. She wasn't sick, she just wasn't happy. It was the first time we have ever really seen her throw consistent fits and she was behaving poorly. We have seen stubborn behavior like this before but usually it was related to illness. I am a bit concerned as I don't understand why she was acting out. Perhaps she just had a bad day but she certainly was not herself. I am hoping to see a change tomorrow. In fact in writing this I have an idea on what to do. I shall try it tomorrow and see if it works.
Sydney's blood counts are continuing to fall but she was not in need of a transfusion today. We scheduled an appointment for Wednesday morning and we are pretty sure that she will be receiving either platelets or hemoglobin. I am happy to see her counts drop off a little earlier than they did after the last round of Cisplatin. To me it means that the sooner they go down, the sooner they will come back up. We shall wait and see if that theory holds water.
The interview....Let's just say I don't think I will be getting my own television show anytime soon. Janet St. James was extremely nice and she really took the time to get to know us and invest in our story. It was an emotional time for me. Whenever I picture the faces of the kids in my head or I think of the angels that have sprouted their wings over the last few months I simply can't contain myself. It either comes out in the form of focused purpose or tears. I still have trouble delivering the clear message that I want to. I have so many words to get out and I am still having trouble getting my message simplified. In my mind I understand the issues so clearly but when I open my mouth I feel like the words come out cluttered. I am trying to explain simple concepts with way to many words. After reading my diary I guess it is clear that I am never truly at a loss for words. I think they did a good job of simplifying the message. I don't know if I convinced the world to give five dollars to save thousands of kids lives but I definitely convinced them that being a parent of a child with cancer was something no one would ever want to endure. I just don't know if I made the connection. It will be interesting to see the finished product and I imagine in the next few days everyone will. It should air in the next couple of days. I still haven't decided if I am going to tell anybody that I am going to be on the news but somehow I think they will figure it out.
7:00 AM 10/7/2003
Another Angel earned his wings yesterday. God bless you Dalton. We will love you for always, we will love you forever, in our hearts you will always be.
I don't feel much like talking right now.
"SYDNEY GOOD GIRL"
12:00 AM 10/8/2003
Sydney has recovered from her bout of two year old angst. I had made a correct assumption last night and I have since remedied the situation. But how, you ask? Well actually it is very simple. Since the day Sydney was born, she has always been one of the centers on my life. Whenever I would spend time with Sydney, whether reading a book or just sitting alone, Sydney always new where she stood. I think much of that is the reason why she has faired so well. She knows that no matter what happens in life her mother and father are always there. For better or worse, Sydney knows that she has always been our number one priority. During her treatment she had this message further engrained and there has not been a day go by that she has not had that emotion reinforced. In the last couple of days as things have continued to grow with "Lunch for Life" Daddy has been on the phone or on the computer or otherwise distracted. It isn't that I wasn't with her during the many hours that we spend together each day but it was that she wasn't my focus. I believe that she was crying out for attention. So yesterday, I went back to putting my priorities were they belonged. I am not saying that "Lunch for Life" is not important but that I must remember where my priorities lie. I have been with Sydney everyday of her life but as the phone calls and email started rolling in my head was elsewhere. So, mental note to Mark. Yesterday, I spent my many hours with Sydney - with Sydney. My mind was on her and once again even while she was off in her own little world I was there with her. As Sydney would say, "All better."
It brings up some interesting questions. Have I been spoiling Sydney with the never ending attention? Are we creating issues for her and fears that she can not face life experiences alone? Is it right for a parent to shower such attention on a child and at which point does it become overboard? I may not be right but I think right now she needs her Mommy and Daddy and if it is attention she needs, attention she will get. I can not walk in her shoes but she will not walk this awful road alone.
ENOUGH OF THE ANGEL "WINGINGS" ALREADY!
5:40 AM 10/8/2003
I purposefully did not write in my diary yesterday. For me the space in my heart and on these pages were reserved for little Dalton. It is funny, I had never met him and I have never swapped words with his parents but for some reason I was drawn to his story. I have started to take these angel "wingings" very personally. Something that I had never really done before in life. When I read the words of these parents as they fly by my computer screen I can't help but become emotionally attached. Unfortunately, there is much sadness on the list. With each word of many of the parents I too feel their pain because although I have not walked with them to the end, the fears have become so much more real. It brings the reality of our lives so much closer to home. It is inconceivable to me that these kids are dying. As I read their stories, what generally starts out as a tear, now always ends in anger. I just never knew this world existed and one of the Marks is fighting back with all that he has. That Mark doesn't except the ways things are and he will defeat this monster if it doesn't defeat him first. I like that Mark because he doesn't give up and he is a fighter. I think one of the reasons that I am still able to put one foot in front of the other is because that Mark would have it no other way. At many times during each day he feels like a totally different person and I simply follow him because he has so much hope and strength. There is hope for all of the new parents out there that have just fallen into this world because there is something inside of a parent that makes them move on even though much of their mind rejects their cold hard realities. I guess what I am saying is that regardless of which Mark is out, one is leading the way and he has a purpose.
HERBIE RIDES AGAIN
5:00 AM 10/9/2003
We spent a full day at the clinic yesterday. I kind of liken the experience to a complete overhaul with a deluxe paint job. We went in to the clinic with a rather broken down little 1972 Volkswagen beetle. It was low on gas, the oil was dirty, the filters were clogged, and the tire pressure was low. The windows were dirty, there was dust on the dash and the vinyl seats were cracking from over use. The paint job had faded (pale) and rust spots (bruises) were starting to appear all over the exterior. This poor little jalopy had certainly lost her luster and her little engine was sputtering. A team of mechanics went to work. They added new gas (blood transfusion), changed the oil (platelet transfusion), and even poured in a fuel additive (Tylenol) to really get the engine running. They changed the spark plugs and changed all the filters (new caps for her noodles). They monitored the tire pressure (leg hugs) and made sure they were at the optimal psi. They left no stone unturned. What came out of the garage was a brand new 2004 convertible Volkswagen Bug. It was amazing to see the difference in Sydney. She was pink and happy and playful and ready to take on the world. At the end of the day all I could think of was "Herbie" the Volkswagen from the Disney movies and the little "beep, beep" he would make whenever he would take on a life of his own. That was certainly the case with Sydney. She became alive again. No longer was she the frail, tired, irritable little girl that had been with us over the last week. Now she was a little speedster. From the moment they finished and had disconnected her noodles, Sydney's feet hit the floor and she was off at full speed. Once again she was playful and fun and the complete bundle of energy and love that is so characteristic of my little baby girl.
A funny Sydney story: When we go to bed at night we have a certain routine. After her nightly shot (GCSF which stimulates blood cell growth) all three of us go up to cuddle on Mommy and Daddy's bed. At these times we also add heparin to her noodles, administer her many nightly medications, brush her teeth, cut her fingernails, change her diaper, put her in her "jammies" and anything else that we can think of while she is still and complacent in our bed. But last night was an exception. Every time that I would ask her to do something (i.e. take her medication) she would grab my nose and say "Honk, Honk, Honk!!!", let out a squeal, and then go back to whatever she was doing. She wouldn't do what I asked, in fact, she would act like I wasn't even there. So being the stubborn father that I am I would ask again. This time saying please in my sweet Daddy voice. The response was, once again, grabbing my nose and saying "Honk, Honk, Honk!!!", squealing, and immediately going back to whatever she was doing. This must have gone on for twenty minutes or so and she must have grabbed my nose as many times. God it is good to have my baby girl back. The obstinate little snot. I love her.
On another note, many have asked that I put updates for "Lunch for Life" in my diary. Although I am not fond of the idea I will do it today. The response for "Lunch for Life" has been absolutely incredible. Beyond raising funds for Neuroblastoma, which are desperately needed, the effort has brought great comfort to many of the families that are participating. It has given many of us a voice, a sense of purpose, and at these troubled times for many of our families we are experiencing an incredible sense of joy. We are finally doing something and it is working. The notes and emails continue to come in and it brings everyone a sense of peace and happiness that there are so many caring people out there in the world. I know, personally, that I now have a library of well wishes that I will go back and read over and over again whenever times are tough. Having a child with cancer can be an extremely isolating experience and the love that we feel right now somehow gives us a sense of community and provides some meaning to this entire experience. We feel like we are being heard and everyone in the world is hearing our cries. It has certainly been one of the best times since Sydney was diagnosed. I feel like our desperate cries matter and that there is understanding and support. So, I thank you on behalf of Sydney, Lynley, and all the families that have joined for not only your contributions and your continued efforts to help raise funds but for the surprising gifts of love and support that many of us so desperately needed. Thank you my friends, family, and unknowns for giving us that gift. "Lunch for Life" lives on and fair warning, it will go beyond the ten days. There is just too much good that is happening all over the world and as new families join our effort everyday we need to provide them with all of the gifts that you have bestowed upon us. I do not even think I could stop it if I wanted to. We still have a long way to go to reach our ten million but we will reach our goals and it is thanks to you - our many friends. Thank you for being there when we have needed you the most. There is much more to come as the press is carrying our message to new communities and people around the world. Thank you for supporting us and keep fighting. We will get there. We will save these kids lives. In honor of all of the wonderful people that have helped us in this crusade I will be creating a new link on the website called "From the Front" to share all of the wonderful stories that have come out of this effort. I don't know if I will ever be able to express the feelings of gratitude that I have but perhaps you will get a glimpse in the stories of lives that you have affected. It should be available in the next day or so. Thank you from the bottom of my heart for your continued support. - Mark (father to Sydney)
8:20 AM 10/10/2003
I have really wanted to keep my thoughts about "Lunch for Life" out of this diary. But, as I reread my diary this morning and I reflected upon its purpose I realized that this effort is as much about our journey as a family as anything else that I have written. I started "Lunch for Life" because I had to do something. In this crazy world in which I live there are no answers. As a parent goes through this with their child they desperately seek two things. One being hope and the other to be meaning. I search for items to strengthen my hope everyday. Everybody always asks me, "How does a parent get through this" and I think I can finally put a simple answer down on paper. A parent gets through this with the hope that their child will survive, that they won't be the statistic and that this nightmare will come to an end. The belief that it is possible, that your child will be different and that your prayers will somehow land on a soft ear, that God's plan does not include your child's presence in heaven yet. That is how you get through the days.
The second answer that I search for is meaning. What does this tragedy in our lives mean? What do I have to learn from it? This is where lunch for life has come in. Did Sydney getting neuroblastoma mean that it was my job to help find a cure? For me, I accept the answer to the question as being most definitely, yes. You see, there has to be an answer because it would be far to painful to face a reality where there was no meaning and no answers. "Lunch for Life" has filled this vacancy. It is something that I can do. Even though I can't "fix" Sydney and I can't make her cancer go away. The simple thought that I could keep another child and family from walking down this path gives this whole horrible experience meaning. I can now carry the burden of my sadness and grief because I know that I am doing something about it.
Many have asked me my feelings on "Lunch for Life." Do I think it is achievable? Is it realistic? To me, the answers to those questions are much like my response when I heard that Sydney only had a 10% to 30% chance of survival. The statistics didn't matter and they still don't because Sydney cannot live her life 10% to 30%, she can only live it 100%. The only thing that counts is that she survives and she beats this monster so I don't care about the statistics. Sydney will survive 100%! In the same sense, is ten million achievable. My point is that it doesn't matter. It has to be. If we don't do that right now more children will needlessly die and they will die because our message was not heard. Because someone out there that never heard the story and never had the opportunity to give up their lunch. I don't mean to go on a rant but this is what gives my life meaning and this is what allows me to put one foot in front of the other everyday. So, realistic or not, we will meet our goal. The parents of children with neuroblastoma have been there and know that the life we are living is too much to bear. We can't stop now. There is simply too much at stake. We have a purpose.
HERE KITTY KITTY!!
7:00 AM 10/11/2003
Sydney is doing well right now. She continues to show signs of healthiness and happiness. Although her white blood cell count is surely in the dumps and we are back to keeping her socially isolated, the transfusions that she received earlier in the week continue to give her energy. I don't know what it is about low white blood cell counts but they produce two very strange effects. First, her nose runs constantly. We are spending most of our days chasing her around to wipe her nose. Sydney's nose is the never ending wellspring of snot. The other effect that we see is her imagination. Maybe it is because she is starting to feel better again but she spends half of her days as a kitty and the other half as a little girl. I sometimes think that the overall affect of all of the chemo is that it is slowly turning my precious daughter into a kitten. That actually makes sense, perhaps her constantly wet nose is also a sign of this metamorphosis. I spent about an hour yesterday afternoon running around the house with a cat toy as Sydney would pounce on the toy every time I would stop. The only breaks that we took were to place two bowls on the floor to eat imaginary cat food. When I first tried to envision all of the possible side effects of her treatments this certainly was not part of the plan but I will take her anyway that I can have her. I will write later but it appears to be time to change the litter box. Apparently, I have another purpose.
6:40 AM 10/12/2003
Sydney has spent much of the night coughing. We are assuming that this is caused by the drainage that runs down her throat as she sleeps laying flat. We have seen this many times before and it has become a game. The trick to get Sydney to sleep comfortably is to elevate the portion of her bed where she lies her head. When we do this she sleeps peacefully. The problem is that she will complain about the slope of her mattress before she goes to sleep. Lynley and I will spend the next few nights in a battle of wits with Sydney to see if we can once again convince her that having a sloped bed is "neat." More than likely her response will be "No like it!" In which case we will have to take out the pillow that supports her head underneath the mattress and wait until she falls asleep to sneak it back in. I am still waiting for Dr. Phil to do a show on "Precocious Twerps - how to deal with kids that have cancer." or for "Baby Wise - the Neuroblastoma Edition" to be available in book stores.
POWER - WHAT A STRANGE FEELING
5:40 AM 10/13/2003
We our off for yet another trip to the clinic this morning. Sydney had a good weekend. She was extremely active on Sunday. She still appears pale but I think she is more black and blue than actually white. Yes, it is time for another platelet transfusion. We will see if we are right. As it has become a fun game for Lynley and I the over/unders for Sydney's blood counts are in from Las Vegas. Lynley is predicting a white blood cell count of .9, a hemoglobin of 8.2 and a platelet count of 25. For those of you playing along place your bets early.
Sydney continues to be happy. She still spends most of her time as a kitty but that seems to keep her happy. Her vocabulary continues to grow and we are hearing new words and sentences everyday. Some of the more common words that we had been spelling to keep her unaware of our intentions are no longer going over her head. She knows what we are spelling and she doesn't appreciate our secrecy. I guess the next step will be pig Latin.
The last two weeks have continued to be very good for Lynley and I. "Lunch for Life" has provided many unexpected benefits. One of things I have started to realize that has been one of my sources of weaknesses is the sense of powerlessness of the situation. I think that is one of the many reasons that parents rely so heavily on hope. There are absolutely no guarantees in Sydney's life or treatment and everyday continues to bring new surprises. I still can't "fix" Sydney and although I know what we are doing with "Lunch for Life" will likely not impact her life it feels like I have some power over the situation. I feel that I can make a difference and in this world that is a very strange concept. I continue to receive email from many parents of children with neuroblastoma and it is clear that many feel the same way. For the time being our tears of sadness have on many occasions turned to tears of joy. I am beginning to learn that I was not the only person in the world that was shocked to hear that pediatric cancers were so deadly. I think the vast successes that they have had in childhood leukemia and lymphoma in the last ten years have given everybody the impression that childhood cancers had been cured or very near to it. I get email and messages everyday from people that are as shocked as I was to learn that these other cancers even existed. The awareness that has come out of this desperate plea has been so extremely valuable. It has been such a wonderful experience for me. After spending nearly 4 months powerless and traumatized, I am ecstatic to have a sense that something is being done. I know we haven't cured cancer and I know we haven't reached our goal but the little successes that we have everyday provide some meaning to this horrible ordeal. Right now, it is very hard to focus on all of the scary feelings regarding Sydney's future. I am overwhelmed with a positive feeling of action and I am in awe and humbled by the wealth of well wishes and support. I think I only have the capacity in my heart for so much emotion and the good certainly seems to be pushing out the bad right now. Perhaps, the other Mark has resurfaced for a while. I am so very happy to have a purpose.
BLOOD TELEPATHY - AN UNPROVEN SCIENCE
6:00 AM 10/14/2003
Once again we have proven the importance of the blood test. I don't know how we could have been further off in estimating Sydney's blood results. Sydney's platelet count was 40(low), her hemoglobin was 11(normal) and her white count was a whopping 20,500 (far above normal). This brings up an interesting debate. We are on day 18 of course number 5. If this is anything like the last course of etoposide/cisplatin in round 3 her counts were kept artificially high due to the GCSF (her nightly shot of growth colony stimulating factor.) Once we stopped the GCSF her counts plummeted. Last night we stopped the shots. However, this round we have already seen her counts dip down we just didn't see the normal 3 or 4 day period where her white blood cell count hovered around .1. That could be because we were not in the clinic during that 3 or 4 day period or because we have not actually reached that point. It is an interesting debate as to whether we are in recovery mode or simply waiting for the fall. Regardless, with Sydney's counts the way they are she certainly isn't bullet proof (despite her belief) but she is currently overprotected from infection. We no longer have to be social outcasts (well, no longer by choice). It is quite a surprise.
Later this week we will be going in for scans. There will be a significant amount of nail biting. The scans are for our preoperative appointment with Sydney's surgeon. They will tell us a lot about Sydney's tumor and answer questions like. Has Sydney's tumor continued to shrink since round two? Is it the same size? Has it grown again? How much surgery will be involved? As always, we are continuing to pray and hope for good news.
5:20 AM 10/15/2003
A story for you Sydney: Some day you will be old enough to read and I think it is important that we keep things in perspective. Today was a wonderful day. You were healthy and playful and we finally had the opportunity to take you out of the house. One of the many great things that people have done for you and our family is have a monthly fundraiser in your benefit at the University of North Texas Health Science Center. At lunch they have a cookout and many people come to eat and help raise money for us. The do this in the atrium of the university, smack dab in the middle, right in front of the front door for all to see. They do this for you, your mother whom they love, and for your father who is lucky enough to be an innocent bystander. Yesterday afternoon we took you to the cookout. We wanted to take the time to thank all of the wonderful people for helping us out with this monthly benefit in your honor. Let me preface this Sydney, by saying that we explained to you what our intentions were. I personally told you that we were going to thank these many people for all that they have done for you. Here was your response: Upon entering the atrium, for all to see, you decided to once again be a kitty cat. You chose to meow at everyone (which I guess was "catlish" for thank you.) You ran around the atrium pawing at the curtains on the windows and clawing the furniture. You had several conversations with prominent doctors, researchers, professors, and office personnel -- all of which you meowed at. Many of them meowed back much to your delight. All in all, and considering you had not been out in public in well over a month, you were a very good little -- kitty. The purpose of this activity, however, was to thank the many people that work at this "human" medical facility. I only tell you this to discourage the behavior in the future. Perhaps next week we will visit Mercedes Animal Clinic to thank Dr. "Uncle" Bob for all of his help, at which point I assume that being a kitty will be quite appropriate. I will let you know how this turns out. I can't wait to tell Truman this story when you are 25 and he comes to pick us up for your first date. You have to admit -- you owe it to me. On behalf of the entire family I offer the nice people who have been so supportive of us a sincere -- "MEOW!!!" Please bear with us, cat like behavior appears to be yet another devastating side effect of the chemotherapy although I can not seem to find it anywhere in the literature. Perhaps, I need to make yet another call to Dr. Eames. Luckily for her, I have a purpose.
NAIL BITING - A PARENTAL SIDE EFFECT
5:00 AM 10/16/2003
Days like this are always real nail biters. At 8:00 AM we will be taking Sydney in for her CT scan. This is always an uneasy time. Thousands of questions seem to be rolling through my mind and yet there is not one single answer. Here is how it will go. At about 7:15 we will wake Sydney up at which point she will be mad because we will not give her her morning cup of milk. This is a hard concept for a two year old to comprehend. We will quickly dress her and bring her down stairs to perform her blood lab draws. At 7:45 we will be out the door. I will drop them off in front of the hospital where they will promptly enter at approximately 7:57 AM. I will then park the car in the parking garage and and drop her blood sample off at the clinic to be tested. I will then walk across the street to the lovely Cook Children's Medical Center and Day Spa to commence waiting and force feeding Sydney the 18 oz of contrast in preparation for her scans. At some point between 10:00 AM and 4:00PM, we will take her back for her 5 minute ride on the "Sydney tunnel." Yes, it will be only me that gets to participate as we all know the machine scares Lynley. Okay, fine, she can't go in because she has to take care of "Rice." After our little ride in the "Sydney tunnel" we will head back to the clinic for our mid week check up. Hopefully, tonight we will hear the results of the scans although there is no guarantee. We are hoping and praying for continued success and that the tumor has continued to shrink. Continued success will mean a nice short 4 hour surgery as opposed to a more complicated ordeal which could certainly take much more time. Most importantly it will indicate that we are still winning the battle and that the chemotherapy continues to do its job. Today, I have two purposes.
10:40 AM 10/16/2003
Mission accomplished!! Now we wait............................
SEARCHING FOR ANSWERS
5:40 AM 10/17/2003
We are still awaiting the news of Sydney's scan results. I honestly sometimes think this is one of the worst parts of our journey. It is the lack of answers that makes it difficult. We have been able to coast along so well during the last few months due largely to the results that we received after round two. We knew the chemotherapy was working and that the tumor was shrinking. But there is something about the fact that new scans and tests are coming that makes you second guess everything you know. I try and concentrate on other things but I can't stop thinking of why haven't they called. Is it because they have bad news and wanted to wait to call us into the clinic in the morning? Did they want us to be happily living in oblivion for one more night before sending us back into shock? Did the radiologist just not get the chance to go over our scans? There is a myriad of both rational and irrational questions floating through my brain. There simply isn't a website I can go read or a book that I can buy that will provide the answers and it is frustrating. Neuroblastoma is incredibly unpredictable and so much about it is unknown that these milestones in Sydney's treatment are always a fearful proposition.
On a side note, my daughters kitty transformation is almost complete. I was hoping it would get better but, alas, I was wrong. Sydney is feeling great, her appetite has returned, and she is once again full of energy. Last night the family went upstairs to cuddle on Mommy and Daddy's bed. As I put Sydney on our bed she began meowing and pouncing all over the bed. I was concerned that she would fall off the bed or hit her head on the headboard so I said in my stern daddy voice, "Sydney no! No jumping on the bed!" To which she replied, in just as stern a voice, "No Sydney Daddy! Baby kitty!" and quickly resumed her pouncing. At this point, I had to summon all of my powers to keep from bursting out in laughter. Very quickly I had to absorb this foreign logic and react with both poise and equal and opposite force to such an interesting intellectual conundrum. Had she beaten me? Had her two year old mind defeated my parental acuity? How clever she was. My first thought was to pick her up and toss her out the back door as we have done with many of our cats on occasion when they have misbehaved. But then, at that moment I realized. Although the metamorphosis was nearly complete this was still my daughter. I could not toss her out for the night. I instead offered in my stern voice "Bad Kitty, No climbing or jumping on the furniture!" At which point she feigned sadness, crawled up onto my lap and a petted her while she purred. You see, there is always an answer. You may not like the result but there is always an answer. In this sense, raising Sydney is much easier that waiting for test results. Hopefully, we will know something soon.
1:40 PM 10/17/2003
News has arrived. Sydney's tumor has continued to shrink. The tumor is now approximately 19mm in diameter (just over 1/2 inch). The chest scan came back clean and there does not look to be any involvement with the lymph nodes. There was thickening of the walls of something called the retrocural. As of this moment, I have no idea what that means or what it is referring to. I have been told that it is not something to be necessarily concerned about as it is very nondescript. Surgery will give us more information as to what this is. For the moment we are ecstatic and relieved. The fact that the tumor has continued to shrink is great news. The hope is that all is left is a small ball of necrotic tissue. We have been scheduled to have surgery either the 22nd, 23rd or 27th of this month. We probably will not know anything until Monday. For the time being we will be content having a nice relaxing weekend. I have a purpose.
AT A LOSS FOR PAIN
7:00 AM 10/19/2003
I often find it difficult to write in my diary at times like these. With Sydney simply doing so well I just don't have any pain or fear to put down on paper. I write these words because I know in the next few days they will once again feel foreign to me. Right now, everything in our life seems so incredibly normal. I am guessing that it is related to the human parental capacity to cope and the resilience of children. With Sydney smiling and happy and pouncing all over the house I am incapable of thinking about anything but the joy and the happiness that I am experiencing right now. My biggest concerns in life have changed. I am incredibly busy with work and "Lunch for Life" continues to grow everyday. Although many of the day to day activities that I muddle through may seem strange to others, for me, I am going through a high point. My daughter and wife are both well and happy, my work is challenging, and I continue to receive comfort from many around the world. In some ways it is completely surreal. I step back and ponder the situation as though I am an observer in someone else's reality. I guess this is a testament to the fact that we can move on and adjust, that we can still feel happiness and that life continues on. I realize that as surgery draws closer my emotions will change and the reality of our situation will come back but, for right now, I am content in knowing how lucky I am. I feel blessed by the love of my wife, the mere fact that Sydney is by my side, and that friends, family and unknowns have us in their hearts.
"Lunch for life" has continued to bring many successes in our lives, many that were totally unexpected. Although we continue to strive to reach our goal I am amazed at the peace and meaning that it has brought to many of the families that have been touched by this disease. I do not know that I am capable of translating the emotions into words but it has certainly been an empowering experience for many. As we muddle through looking for answers and direction, I know that "Lunch for Life" has not only been a purpose but an incredible source of comfort. It is as though a light has gone off in my head. I do not know that it justifies what has happened in Sydney's life but it certainly is a powerful source of good to come from it. It makes the burden of fear much easier to carry because we are actually doing something about it. It does not provide meaning or the answers but the fact that we are changing the lives of many families and children of the future make this battle seem noble instead of just a devastating hiccup in life to be endured. It is a source of strength. I know that there is still much to do but the little successes and warm well wishes that I receive every day make my life far more bearable than I every imagined it could be. It is so very nice to have a purpose.
6:00 AM 10/20/2003
Today we will have yet another clinic visit. We should find that her blood counts continue to be normal and that she is healthy. Hopefully, today we will find out when her surgery is going to be. I am really torn. The last few days have been so incredibly wonderful with her that the thought of putting her through surgery in just two short days seems horrible. She is so happy and energetic. I just want to squeeze her and hug her and play the days away with her. She just seems so incredibly normal. On the other hand, the more quickly we go in to resect the tumor the closer we will be to her cure, the closer we will be to a day when she won't get better just to go back and have another round of chemo, and the closer we will be to having my baby girl back for good. I know my feelings really don't matter in the big scheme of things but it just pains me to see such an incredibly loved, adored, and sweet little girl have to endure this roller coaster. It still doesn't seem right. Life is just so breathtakingly happy for Sydney right now. Although she continues to be about 50% kitty, she knows that she is loved and you can see the tremendous joy in her eyes. There is a distinct little sparkle of pure innocent bliss that always shines in her eyes and I don't want it to go away. It is a look of peace that I don't want to see replaced by fear or pain again. I intend to soak up every moment and keep it close to my heart so that it will be there for her again when she needs it. Today is for Sydney. I have a purpose.
PARENTAL WONDER POWERS UNITE
6:10 AM 10/21/2003
Sydney continues to be incredibly happy. Although her blood counts were slightly down and she is, once again, more susceptible to infection, she has continued to get more energetic and, well, clever. Part of my joy in life has always been watching the subtle changes as she has continued to grow. With all that has gone on with treatment it is sometimes hard to focus on the big picture of Sydney's maturity. I don't see the forest for the trees - so to speak. I spend so much of my time worrying about her condition it is only after a couple of days of normalcy that my brain lets me look at her as a child instead of as a cancer patient. For that reason, the last couple of days have been wonderful. Sydney's vocabulary has started to change and I am seeing her sense of humor truly starting to grow. She has been able to tell right from wrong for a while now but it is her reaction to those experiences which has me in stitches. One of the things that Sydney knows that she is not supposed to do is touch the pots and the pans on the lower shelves without Mommy and Daddy's help. She knows that if she does that she is a "bad girl" and will have to sit in the "naughty" chair. Well, yesterday afternoon Sydney marched straight up to the pots and pans and slung them off the shelf and onto the floor. She did this right in front of us. She knew the consequences. Lynley and I both shouted out "Bad girl!!" After a moment of stunned silence, Sydney looked straight up at us and in a quiet, gentle voice and uttered an adorable "meow!", with a sweet smirk on her face. Yes, Sydney had outsmarted us. Being a kitty there was clearly no way that she could also be a bad girl and because of that we would have to punish her just like the kitty by locking her out in the playroom. But once again, as Lynley and I summoned our parental wonder powers we took the bad little kitty, scooped her up, and sat her in her naughty chair - with one of the kitty's jingle balls of course. Now the only problem is that when the kitty misbehaves Sydney now demands that the kitty sit in the naughty chair. She will stand there and watch him and whenever he moves she will exclaim "Bad kitty, behave!!" "Behave", by the way, is one of her favorite words. She uses it for the kitty when he does something she doesn't like and many times a day at her Mommy and Daddy when they kiss or tickle her. It seems so incredibly good to focus on these little issues. This is progress and this is life. What could be better? More than ever, I have a purpose.
We still don't have a firm surgery date but I am anticipating the answer this morning. We will either be going in tomorrow or next Monday. I still don't know which one would be better. Oddly enough, with Sydney and our lives in their current state, I haven't been able to worry about it. I am sure my time will come but I am content to live my life without the burden of that emotion until it is necessary.
10:56 AM 10/21/2003
Well, I guess my rest and relaxation is over. Sydney's surgery has been scheduled for tomorrow. We have a pre-surgery appointment this afternoon. It appears it is already time to worry but until she takes her nap I am going to enjoy every second of her.
6:50 PM 10/21/2003
After another very busy day we are finally home. Sydney's surgery is scheduled for 8:30 AM which we are very thankful for. We will be arriving at Cook's at 6:30AM in preparation for her surgery. Having the surgery that early in the morning we won't have to keep food and fluids away from her for too long of a period of time. She loves her milk cup in the morning but that is a battle that we have become used to. The surgery is expected to be fairly simple for that of a neuroblastoma patient. It is not touching any organs or arteries so the theory is that it will be fairly quick. The surgeon suspects that he will only be working on her for a couple of hours. He will remove her tumor, her left adrenal gland, several lymph nodes and of course any other evidence of tumor he finds. Based on the CT scan he is very comfortable with the procedure and hopes that once he gets in there will be few surprises. Unfortunately, you just never know with neuroblastoma. Please wish us luck and keep our little princess in your prayers. They seem to be working.
5:20 AM 10/22/2003
It is not exactly a normal morning but I feel better than I had anticipated. Lynley and I have talked to many people and I think we have done just about all of the research that we could have. Many other parents have sent us information and experiences with their children in the same situation. We even have some pictures that were taken of other kids with neuroblastoma right after surgery so we have a pretty good idea of what to expect. We spent some time last night trying to explain to Sydney what was going to happen. I think she understands that they are going to fix her tummy but, to be honest, she was more interested in "honking" my nose. It is really funny when you think about it but, yes, there I was sitting on the floor with Sydney. I was in the middle of explaining the surgery in Sydney terms but all she could think to do was to, once again, grab my nose, and say "Honk, honk, honk!!." We will see if she understands when we show up to the hospital in less than an hour. Well, I have got to run. I have a purpose.
5:06 PM 10/22/2003
Sydney's surgery has been completed. It was a long day and she seems to be resting fairly comfortably. Dr. Iglesias, Sydney's surgeon feels confident that he got about 99.??% of the tumor. The surgery was more complicated that expected as the tumor was wrapped around an aorta and some blood vessels. The surgery took about 3.5 hours to complete. I well write more as time allows as there is certainly a lot to say. Right now, it is time to be with my daughter. I have a purpose.
SURGERY RECAP - MEETING EXPECTATIONS
6:20 AM 10/23/2003
Sydney finally seems to have the pain under control. Throughout the night, every 30 minutes or so, Sydney would wake up and wince out in pain. These episodes would be very short lived but she would cry out, her temperature would rise and her heart beat would jump up to the high 140s and 150s. We would pull fuzz off her blanket and gently rub her nose or when it was necessary she would ask for us to rub her tummy to make it "All better." You see Sydney has two foam casts, one around each arm. They call them "no-nos" as their purpose is to keep her from pulling out the nose tube or any of the other various tubes that are coming out of her body. The problem with this is that she can't rub fuzz on her nose. This is one of her biggest coping mechanisms. So much of the night either Mommy or Daddy stood next to the crib armed with purple fuzz gently rubbing it across her nose or forehead. After about midnight the pain episodes were fewer and far between and I think we all got some much needed rest.
I am once again becoming aware of the effect of stress and worry on the body. As parents we come armed with the ability to face about anything but, once the day is done and you have a moment to breathe, the feelings of tiredness become overwhelming. I went full blast yesterday. From early in the morning when Lynley and I had packed our bags to the time we finally fell asleep we were in a constant state of awareness. At about 6:30AM yesterday we arrived at Cook's Medical Center. We got to spend about two hours with Sydney before they took her away. She was not particularly happy with the new environment and all the new faces but the moments that we shared when it was just the family were incredible. She was happy and incredibly loving. She wanted to be held and loved by both Mommy and Daddy. Right before they took her away and the Versed was starting to kick in was one of the happiest moments I can remember. Yes, my daughter was drugged, but she was so incredibly happy. As she sat between Lynley and I on the bed she giggled as we both gave her kisses on her cheeks. It will be a memory that I keep with me always.
The surgery itself was stressful for both Lynley and I. We had our friends and family around us and the fact that the newspaper article about "Lunch for Life" had been printed that very morning provided a much needed distraction. At the beginning, we were both very good. The surgical staff is also very good about updating us periodically. The problems only really started to raise their ugly heads when Sydney's surgery went on much longer than anticipated. Logically, we were prepared for the possibility and understood that that the length of surgery was not necessarily a bad sign. But something deep down begins to terrify you and your thoughts move towards the irrational. I remember jumping every time the phone would ring or I would hear the surgery doors open. As I looked at my wife, oblivious to my own actions, I discovered that the fear and anxiety was becoming more and more apparent on both of us. Once the surgery had completed we both had a tremendous sigh of relief and although it would be an hour before we got to see Sydney with our own eyes, it was a much easier time. Seeing Sydney for the first time would have been shocking to just about anyone. Luckily many of the families on the neuroblastoma newsgroup had sent me post operative pictures so that we would know what to expect. She was incredibly swollen and she had several additions to her original set of noodles. All in all, she was still our baby girl and it was nice to finally be by her side. Although we could not pick her up and hug her, it was nice to simply rub her forehead and hold her hand.
Today we will watch her closely and hope for peace and comfort. We will give her much love as we have plenty to give because of the fill up we have received from all of our friends, family and unknowns that have given us the strength to move on. Thank you for the prayers.
2:20 PM 10/23/2003
As I sit here this afternoon it is a little harder. Sydney is stoic. She lays in her bed with a bundle of noodles upon her stomach going to various places all over her body. Her eyes appear as slits as she looks straight forward towards the TV. It is hard because I cannot provide her any comfort. I know she is scared and I know that she hurts. Not only from the pain but from her soul. She has become more responsive throughout the day but I am having trouble making a connection. That is perhaps the hardest part. I tell her that I love her and that I am here. I tell her what a good girl she is and how it will get better. There is really little response other than the occasional head shake or nod. She rarely makes eye contact and it is clear that she has discomfort. I only wish it were me. I know this will pass and it is that thought that keeps me from busting out in tears. I know that I must go on and tell her I love her and that I am here no matter what happens. This is my least favorite part of this whole ordeal and I do not like it. But then I guess if this journey was about my likes I certainly would not have my little girl going through this. I just wish I could give her comfort. I still have a purpose I just wonder if she knows it.
SLEEPLESS IN FORT WORTH
9:40 AM 10/24/2003
In the last 48 hours we have slept roughly 4 hours. Sydney has battled many issues with pain and just general discomfort. Yesterday, the epidural that was used for pain management simply lost its effectiveness. Apparently only half of her body was receiving anesthesia. After several hours of trying something "new", over and over again, it was decided to go to an intravenous morphine drip which seemed to help with the pain. Unfortunately, we still had a night of cries and whimpering and minutes of sleep were few and far between. I don't think she was in pain but rather uncomfortable because of all the tubes, needles, and such restricting her movement. This morning, however, many of her medical apparati have been removed. She is no longer on oxygen, her NG tube (the tube going into her nose and down to her stomach) has been removed, the epidural needle is no longer in her back, her peripheral catheter has been removed from her right hand ,and the Foley catheter (to collect urine) has been taken out. She seems comfortable and now I can hug her and hold her and let her know that daddy is here. It has only been a short while but both Lynley and I are feeling better. We truly feel that we can love our little girl and give her comfort. And yes, I have already napped with her in the crib. We still are not out of danger but we seem to be on the down hill side of this particular hill in the journey. I must go sleep with my daughter. Everybody now knows I have a purpose.
SLEEPLESS IN FORT WORTH REDUX
12:30 PM 10/25/2003
I really don't know where to begin. Last night was perhaps one of the worst. As I last left myself, Sydney was returning back to herself but it did not last for long. The morphine was beginning to take control and as the hours drew on Sydney became less and less consolable. We knew the effects of morphine on Sydney but last time it only occurred after many days of the drip. It was probably a combination of the drug and the lack of sleep that sent Sydney to the deep end. At first she would have moments of silence but it did not take to long for it to turn to continuous terror. In the evening we tried to adjust the medication but to no avail. She started hallucinating and she was certainly losing her connection with reality. She believed that the lights on the ceiling where balls and that they were falling on her. I think she also had the sensation that her crib was closing in on her. To top off this nightmare for my baby girl her oxygen saturation level was dropping and oxygen was once again added to the mix. By midnight Sydney had left our reality and was battling her own demons full time. There was nothing her mother or I could do. There were flashes of sanity but for the most part she was lost. At approximately 2:00 AM we were given a choice. We could switch narcotics to Demerol or move to another floor where they had the expertise to deliver Fentanyl. Without any experience with Demerol, we chose to be moved down to 3 North. Sydney had now spent three days with only brief intermittent spouts of rest and none of it had been comfortable. It was time to find a solution we knew we could trust and so we did.
The move from one room to the other was fairly comfortable for Sydney but the next few hours would not be easy. We had to wait for the morphine to get out of her system and give the Fentanyl a chance to work. It would be one of the toughest times in this journey. Lynley and I complimented each other and even though we could not get through to Sydney we were there for each other. We were truly a team and one of us always slid in when the other was in need. Both of us had been sleep deprived and had the increased pressure of the nightmare before us, but, I guess, it just goes to show how deep our love has grown as a result of this journey. We were in sync and gave each other the necessary strength to win the battle. It was at 4:30 AM, after a plethora of methods to calm Sydney were used, that Lynley finally got through to her and gave her comfort. In the end, it required holding her tightly to her chest and calming her whenever another tremor of terror hit her. It was a trick that we had tried earlier in the night but it was only after the drugs had started to wear off (and wear on) that we finally made contact. Sydney slept comfortably and peacefully until noon. This morning (or afternoon I guess) she is not particularly in a good mood but she is in no pain and it has been 8 hours since I have heard her cry. She is talking and, although she is still not a happy Sydney, she is with us and comforted by Mommy and Daddy.
GOT MY BABY BACK
6:20 AM 10/26/2003
It did not take Sydney long to show signs of herself. At about 2:00PM yesterday afternoon the giggles were back and Sydney was once again directing those around her. There was only one cry yesterday and that was from her passing her first stool since surgery. It is amazing to see the transformation in Sydney. I am continually amazed at the effects of some of these drugs. With the morphine out of her system she is back to being our baby girl. She is back to laughing and giggling and being herself. Although she is not on solid foods yet she continues to eat 3 North out of Popsicles. She is still frustrated that she is not strong enough to walk but she is determined. As I carry her through the halls to get her out of the room she is very demanding that she walk. I set her down on the ground and keep the bulk of her weight upon me but it is clear that she is still not strong enough. She will wait a moment and then ask that I pick her up. I will walk a few steps and she wants to try again. I have confidence that today she will walk. She is just that ornery.
5:40 AM 10/29/2003
The last week has been the busiest of my life - by far. On Sunday, Sydney began eating solid foods and started walking for the first time since surgery. She was happy and showing signs of recovery. That night we were visited by another Fort Worth father of a child with neuroblastoma. This was my first glimpse into the mind of the parent of a survivor. His son, who was diagnosed at the age of two, is now almost five years out of transplant and is currently disease free. Although they followed a different protocol this gave me much hope that there were successes. It reinstilled my confidence. I am continually amazed at how similar all of these kids and families are. I felt an instant kinship and for him I think it brought back memories of happy, sad, and more terrifying times. I enjoyed seeing the other side. As bad as this monster has been in all of our lives I continually learn how many little positives come out of this experience. As a reflect upon who I was when I entered this battle I know longer recognize myself. Certainly my priorities have changed but it goes much deeper than that. I find good in things I previously never recognized and I find happiness in the simplest of actions. My life seems much less cluttered. I have new rules and boundaries for who I am and what I think and in that sense I am much happier. I still maintain that this experience is something that no family or child should have to go through but it is nice to know that there is some good to come out of this.
Early Monday morning I left on business to Florida. My company was pitching what could be our largest client and, although I definitely did not want to leave Sydney or Lynley, life had to go on. Although all of this craziness is going on in our lives we still have to sustain our lives, pay our bills, and go to work. That, at least, is what I tell myself to make it okay. Sydney and Lynley left the hospital shortly after my departure to take a two day hiatus from the hospital before the three of us went back for the sixth and final round of the induction chemo regimen. It was nice for them to get away and, although I could not be there with them, they seemed to have a good time at home. They carved pumpkins and played and did all of the normal things that we have come to expect of Sydney. For the most part she was normal and although Lynley had to adjust some of her pain medication all was routine around the Dungan household. Apparently the Hydrocodone had an intoxicating effect and Sydney spent much of the first day walking around like a little boozer. She would be standing up and then all of a sudden fall back into a sitting position and start giggling. Lynley adjusted the dose and by the time I got back on Tuesday evening Sydney was back to herself.
Seeing Sydney for the first time after my two day trip was a little surprising. I don't know if it was the time away or just an altered perception of her that I had in my mind but when I returned I was a little shocked. She looked frail and sick and she had dark circles under her eyes. Maybe this is the way she looked when I left but I was still snapped back into reality upon my return. I realized, once again, that I was back in the battle for her life. I had a whirlwind tour over the past few days and I must admit that for the first time since diagnosis my focus was not on Sydney. I had stepped out for a while and focused almost completely on work. I think that for a few moments, for two quick days, I had forgotten. It was both good and bad but I was ready to get back to my world with Sydney. Last night we cuddled on the couch while we watched "Charlie Brown's, The Great Pumpkin" and all was right in the world again. Underneath the surprising exterior was my baby girl. She was just the same and full of love. It was so good to have her back in my arms. This morning we return to the hospital. I am back to my purpose.
THE WELL SPRING OF HOPE
6:00 AM 10/30/2003
Well, we are back at the wonderful Cook Children's Resort and Day Spa. Sydney is doing well minus a little discomfort. In preparation for this round of chemo they had to do a urine analysis. This requires a urine collection which, for Sydney, is an uncomfortable proposition. Basically, so they don't have to catheterize her (thank goodness) they put a zip lock baggy / post it note on her "who ha" to try and collect her urine. It is uncomfortable for her and, unfortunately, it does not seem to work very well. We had to try this method a couple of times before we had any success. For this reason, chemo was not started until about 7:30PM last night. She has rested well throughout the night although we have heard several whimpers.
On another note, we have received all of the pathology on Sydney's tumor resection. They found absolutely no evidence of live disease. This is what you would call a "Yippee" moment. This is not minor good news. This is major great news. This is another milestone on the road to success that we have been blessed enough to pass. Does it mean anything long term - No. But, right now, this second, Sydney is winning and it continually increases her odds for survival. Our prayers are working.
This trip to the hospital has been very relaxing. I think both Lynley and I are truly starting to feel comfortable in our skin when at the hospital. We, once again, decided to make this trip to "chemo central" a vacation. We have chosen to relax and enjoy time with Sydney. The last two weeks have been incredibly exhausting for both of us. I think we could both count the number of hours we have slept in that entire time on our fingers and toes. It was not only the surgery but also our professional lives and caring for Sydney that has had us in such dire straights. We were both physically and emotionally drained. This was a perfect opportunity for our vacation.
I am continually amazed at this transformation that I have had as we have walked this road with Sydney. I continue to change on a daily basis. As I reread my diary and reflect on my fears they appear foreign to me. I think part of this metamorphosis is, not only the changes a parent of a child with cancer would normally go through but, also, the additional benefits of "Lunch for Life." I no longer feel the powerlessness. I feel like I am contributing and I am making a difference. Combined with this I also have ever increasing hope. Hope is the most important feeling that a parent could have. It is the one thing that enables me to put my foot in front of the other everyday. Power, purpose, strength, and the others are merely determinants of the speed at which I walk. What I am saying is that hope is the foundation and without it none of the other feelings and emotions would be able to exist. The "Lunch for Life" crusade has exposed me to some incredible success stories. With that I have gained hope. It has also given me purpose and focus. With all of the positive that is happening I no longer let my mind drift to the "what ifs." I simply do not have the time. I also feel comfort by helping others and that increases my sense of meaning. Right now, I am living in a whirl wind of positive emotions and it only can benefit me and my family. I am fully aware of which Mark is out and as I prepare for Sydney's transplant in the month of December I want to document all of these positives because I know there will be another time in which I am not so sure. I, indeed, have a purpose.
TRICK OR ----------
7:15 AM 10/31/2003
We are pretty confused. Sydney is continuing to throw us for a loop. Last night was another fairly sleepless night. Sydney woke up about 11:00 PM last night complaining of pain. In Sydney's words "Oweee belly". We do not know if the pain is from her surgery or if, in fact, from something else. It is a little hard to decipher toddler speak. She has many moments of pain free pure joy and happiness but what we are starting to discover is that she has discomfort from her bowel movements. We are suspecting gas in some form but it is really hard to tell. She does not appear to be constipated. She is not as frequent with her bowel movements. They are still coming a couple times a day but they come predominantly in the form of diarrhea. Not a little either. Generally with these episodes she wants to be left alone and winces in pain throughout the ordeal. This is the reason we think she woke up last night.
That seems pretty straight forward but it gets far more complicated. Sydney stayed awake until about 3:00 AM. She has always been such a great sleeper and this hits us as odd. She also spent much of that time complaining of pain. The strange part is that she does it whenever we are not paying attention to her. Is she manipulating us? Does she really have pain? We are guessing that it is a little bit of both but it is, yet, another unknown. Once again, we find ourselves throwing a battery of drugs at her to find a solution. I find myself in need of the book "Baby Wise - the Neuroblastoma Edition." This morning we are going to withhold some of her other meds and try some Mylicon. Something is bound to work and we will find it. She is just such a sneaky little twerp - God, I love her. I guess we will be spending much of today thinking, "Trick or Pain?"
Yes, today is Halloween and Sydney will participate as, nothing less than, a kitty. She is prepared with face paint, kitty cat ears, and a costume. This morning at 11:00 AM they will be having a Halloween party down in the atrium. Sydney never really liked to be the taker of candy (We have never really exposed her to the culinary aphrodisiac) so I am sure she will spend much of her time handing out candy to the other kids. That has always been her favorite pastime during this holiday anyway. Many of the nurses and staff have dressed up and I think it will be a great memory for Sydney. I am really looking forward to spending it with her and Lynley. I have my purpose - even on holidays.
SYDNEY IS GRRRRRRRRREAT!!!
6:00 AM 11/1/2003
Sydney had a wonderful time at the Halloween party in the atrium yesterday. The party was enormous with at least 25 tables of goodies to be found. Everyone was in costume including many of the parents. As a special treat "Tony the Tiger", of Kellogg's fame, even made an appearance, although I think he may have felt a little skittish by the unnatural attraction that our little kitty had toward him. As we maneuvered Sydney and all of her medical apparati from table to table around the atrium, Sydney could not take her eyes off of the seven foot tiger. Although we would be standing at a table full of treats and toys (each table was a veritable Mecca of childhood toys, videos, and candy) Sydney would have her eyes glued on Tony. After much wiggling and demanding we finally had to break ranks from the "treat line" to give Sydney the opportunity to meet her new idol. I put her down on the ground and she looked up at Tony in sheer awe. After a moment of shock she ran up to the cereal mogul and gave him a huge hug. This was obviously a religious experience for Sydney and I don't ever recall her having such a strong reaction. After hugging him for what seemed like ten minutes we would have to peel her off only to find her running back to him as soon as we loosened our grip on her. This happened no less than ten times. We felt sorry for Tony knowing that he had many kids to see that were standing before him but we were also happy to see Sydney so enamored. It was one of the cutest things that we had ever seen. I guess I would liken the experience to being able to play golf at Augusta with Ben Hogan and Bobby Jones. Although there probably would have been a little less hugging.
Sydney is officially off of pain meds and has slept comfortably throughout the night. It is nice to know that although she is surrounded by high tech equipment and being infused by even higher tech medicines that it was a simple dose of Mylicon that was needed to bring her comfort. She is still clearly not the happiest child but is certainly on the road to recovery. She still is not eating. We aren't really sure why, but it was interesting to note that she crammed down three large sugar cookies from the Halloween party downstairs. Clearly, we are back to playing the game of getting her to eat anything that she will put in her mouth. The trick now becomes finding healthy foods that she will eat. We know the chemo is affecting her taste buds and it is always a game to find new foods that she will eat. We will continue searching because I am pretty sure that a steady diet of sugar cookies is not in her best interest. Perhaps a large box of Frosted flakes may be the ticket they're grrrrrrreat!! - thank you Tony.
6:20 AM 11/2/2003
At 7:00 PM last night we returned to the comfort of home. Throughout the day Sydney's appetite increased and by the end of the night both Lynley and I were sick from watching her eat. It is, as always, good to be home and back to our routines. We have a few new concerns but for the most part it has been a fairly uneventful ride on the chemo twister. Sydney has developed a small sore near her central venous catheter exit site. There is some redness and it is something that we will have to watch on a daily basis. This means daily dressing changes and a wrap bandage that will not stick to her skin. For the record, this type of bandage really scares me. I don't like it because there is nothing to tape her "noodles" to. With the normal bandages we are able to put a loop underneath the adhesive bandage and tape her "noodles" back to the bandage. This is a fairly secure method of keeping them out of the way and safe. One of my biggest worries has always been pulling the catheter out. Like I said ,this is an inconvenience and something that will most likely clear up with adequate care but it is just something that needs to be watched closely. Starting today we will be back to our normal post chemo life style. Sydney will receive her nightly GCSF shot in alternating thighs and her usual slew of anti nausea and antibiotic medicines. Additionally, Sydney will be back to her scheduled social isolation until her counts recover. All in all, our "normal" life is continuing as planned and we are ecstatic to be able to spend an entire month with Sydney before we enter transplant. We are praying for a feverless and infectionless couple of weeks.
FUF NEUROBLASTOMA, FUF!!!
5:50 AM 11/3/2003
Sydney continues to do well in the comfort of home. Once again we arrive home to find that her vocabulary has continued to grow. I don't know why we notice it after a hospital stay but it is always a shock. Lynley and I are both noticing that she is picking up on our conversations. Not only are we having to watch what we talk about in her presence, but, we are also finding that spelling out the words is not as affective as it once was. One of the most interesting new occurrences is her obsession with monsters. We really noticed this after her post surgery morphine incident. She seems to be preoccupied with all of the places that monsters hang out. We are giving her all kinds of weapons to defeat these monsters. In our arsenal we have the fact that monsters do not go in cars because they are afraid of them. Monsters are also afraid of blankets, kitty cats, and just about every other item in the household that we can find. This tactic seems to be working and she has started to develop her own monster defense mechanisms. One of my favorites is "Fuf". Now let me preface this by saying that I have no idea what "fuf" is. I have no idea how it works or why Sydney believes it is such an effective weapon against monsters. To date, after hours of pondering and researching the subject, I have not found any conclusive evidence the "Fuf" is an effective method of keeping monsters at bay. So, I cannot suggest its use to other parents. Regardless, Sydney believes it is the single most effective method at keeping those nasty monsters at bay. Whenever Sydney sees or hears (or thinks she sees or hears) a monster she grabs her blanket and shouts "Fuf monster, fuf!" It apparently works immediately and effectively without fail or any side effects. For example, I can be standing across the room right next to a monster and once she grabs her blanket and utters this powerful mantra the monster disappears and I feel absolutely no ill effects. It is just that accurate. Once she has stated these most powerful words the monsters clearly listen and leave the immediate area. Based on my understanding this modality, not only does it make the monsters go away but it also keeps them from returning -- indefinitely. What a powerful weapon.
When living through the experience of having a child with neuroblastoma I often find myself searching for greater meaning. As I have explained before, I have learned so much from viewing things through Sydney's eyes. The innocence and purity of heart, mind, and soul give clarity to what is truly important in life. My perspectives on life have changed and although she is just two years old I find a certain intelligence when viewing the world through her eyes. Some might call it naivety but I believe that the way she views the world is very wise. It has certainly brought me both strength and comfort. Many times during the day I reflect upon how Sydney would view a particular situation. How would her mind and view of the world make sense of a particular occurrence? Many times this "view" makes my life much easier to endure and much happier to live. It is for that reason that I study Sydney's perspective on life and her perception of the world. In many ways, Sydney is wise beyond my years. With that being said and although I don't understand the full effects of my utterances I offer this as my next weapon against neuroblastoma - "Fuf neuroblastoma, Fuf!!!!" Although I may not understand it, I have a purpose.
THROUGH THE LOOKING GLASS
5:40 AM 11/4/2003
One of the most interesting things to come out of "Lunch for Life" has been the connection that has been made by other parents. Over the past week, I have been in touch with five families that have been touched with neuroblastoma from the Dallas / Fort Worth area. I am truly amazed at the similarities that are found between not only the children but the parents as well. These families were not members of the listserv on which I participate but had heard our story through the news coverage and had decided to call me to let me know there was hope. One of the fathers even stopped by while we were at the hospital. The similarities between us were amazing. As we talked about everything from the first moments of diagnosis, through active treatment, and finally to life after cancer I was overwhelmed to see that I was not alone in my strange thoughts. Although I had talked to many parents throughout this journey and, although, I knew we shared this common bond, getting the opportunity to talk to one of these parents in person really brought home the fact that we were not alone. This isn't to say that I don't appreciate all of the friends and well-wishers that have so diligently supported us through Sydney's journey but rather it was a sense of belonging and a gentle nudge that we were not as different as we thought we were. When you walk in these shoes you do feel different. For the most part everyone is nice to you, they are supportive of our family, and they are always there when you need someone by your side. But there is a difference. I don't know if I can put my finger on it but, it is though you exist on a different plane and as though you are viewing the world through a looking glass. The fact of the matter is that we are different simply by the fact that our child has cancer. In the dark recesses of the mind there are still haunting questions for which there are not any answers. They are questions that no one would be asking if they weren't faced with a tragedy such as this. It is how we deal with these dark horses that dictate who we are and how we act. It is those thoughts in the back of the mind that dictate our perception of reality, our altered sense of humor, and, in the long run, our mental health. It is one thing for someone to tell you that it is all right to feel or think a particular way but, it is quite another when you hear someone say that they have felt and thought the same as you and it turned out okay. To hear that we walked in your shoes and we thought what you thought and we did what you did and then to hear that their child has continued to grow and love and turn into a normal healthy adolescent is quite another. It truly brings hope home and lets us know that everything is okay even when it is not. I have tried to capture many of those feelings in my diary but I am starting to realize that there are certain emotions and feelings that I have not captured on paper. Perhaps, I don't want to admit that they exist or, perhaps, my body and soul won't let them surface. I am able to continue putting one foot in front of the other everyday because I don't let my mind focus on my irrational thoughts. Is that healthy or just another coping mechanism gone haywire? I feel good because I do not give them credence and therefore they do not have power over me. It has been the talking with these other parents that I realized that they do exist, that these thoughts and emotions are alive. I just have not given them the opportunity to control me. I am comforted by the fact that although they are there it is okay to have them as long as I do not let them dictate my path. In that sense I am still true to myself and still have the power to care for my family. I still have the power of purpose.
A VISIT TO THE VET
11/5/2003 5:00 AM
Sydney continues to do wonderfully. The recovery from this round of chemotherapy seems to be very different than the others. She has maintained her color and her appetite which is very strange. I realize that she may not have hit the bottom yet but it strikes me as odd that she is doing so well. She is incredibly active and plays much of the day away. We are still seeing some side effects of the therapy such as the fact that she continues to be a kitty much of the time. Yesterday she dropped the TV remote control on her foot and started wailing meows. That was the first time I have ever seen her cry in catlish. I had to stifle my laughter as I tried to comfort her. She really got mad at the remote control and after I had calmed her down she angrily batted the remote control off of the table and onto the floor with her paw. Sydney kitty then meowed at it angrily. They were definitely four-letter meows. At this point, I really could not contain my laughter. Boy, did she give me a dirty look. That was one mad kitty. Not to worry, I am fully prepared to deal with this particularly benign side effect of the treatment.
After three days her CVC line site has not improved. It is still red and we do not necessarily expect to seen any improvement until her counts rebound. We will go to the clinic/veterinarian today for a check up and blood test and we are hoping that they will let us go back to the Sorbaview bandage. The entry site for Sydney's tumor resection looks great. The incision was about 5 inches in length and goes from the left side of her abdomen to just over the midline. I imagine she will have a scar but it is much better than I had originally anticipated. I am expecting a relatively short stay at the clinic this morning but as I have shown before, although I have a proclivity for predicting her blood counts, I am rarely right. At the very least, it will be another trip to the playroom for Sydney and all will be right in the world.
AN EXCELLENT EXCUSE
11/6/2003 6:40 AM
The trip to the clinic yesterday morning went as expected. Sydney's white blood cell count was .8 which is well below normal. Surprisingly, both her hemoglobin and platelets were in normal ranges. Although she did not show any signs that these two indicators were down, we were surprised that they had not fallen as has become the norm. Usually at this point in the journey we have had at least one transfusion if not two. I guess I should just be thankful instead of complaining about it. Additionally, Sydney's weight still has not recovered so we are in a continuing battle to keep her eating as many calories as possible. I would love to see her be a chubby little girl, if not, for just a little while. As we had anticipated, Sydney's CVC line site has not improved so we are continuing to perform daily dressing changes. This is an inconvenience for Sydney, Lynley and I as it is just another project to tack on to the day along with frequent medications, nightly GCSF shots, and the myriad of other activities involved in coordinating medical supplies, and the like. I am happy, however, that we are not facing many other challenges that could be standing in our way. In some sense, we are extremely lucky in comparison to many others. Nevertheless, both Lynley and I are starting to feel like we need a personal assistant just to keep all of this straight. Getting home from the hospital is always wonderful but it also brings with it a substantial amount of work. While we are in the hospital it is quite easy to avoid all of the responsibilities involved with the rest of the world but the problem becomes dealing with it when we get home. The stack of medical bills and insurance reimbursements alone are enough to send a one time accountant to a padded cell. I think the problem is that medical insurance companies print reports and statements that benefit their internal systems and, in the same sense, so do hospitals, doctors offices, laboratories and all of the other participants in Sydney's care. Trying to tie all of these statements and invoices together and make it make sense is quite an undertaking. Currently I have about 200 statements to try and tie together. Our medical filing cabinet which is a cardboard box about 3' x 3' x 2' is currently overflowing. Many might think that I would love the intellectual challenge of sorting through the mountains of materials but this just proves that I am not as anal as I thought. I liken the experience to trying to build a house from scratch but having to do it without the use of tools or lumber. You have to first cut down the trees and whittle them down until you have something useful enough to serve as a 2 x 4 and then starting the laborious process of doing that thousands of times. I guess I am lodging my first real complaint at this whole process but, then again, I think I am writing in my diary today as an excuse just to keep from shuffling through the bills. All of this bookkeeping is certainly getting in the way of my purpose. Perhaps, I will do it tomorrow for today I do have a purpose.
6:40 AM 11/7/2003
COMING CLEAN WITH THE TRIPLE SCREEN
On Monday of this week we received some horrific news. While Lynley was at work she received a phone call from her OBGYN. The previous week Lynley had a doctor's visit to run the usual battery of pregnancy tests with the addition of the triple screen. It was actually the quad screen but everyone seems to continue to refer to it as the triple screen. Nevertheless, they took a sample of blood to test Rice for neural tube defects amongst a myriad of other birth defects. The phone call from her doctor was to tell us that we had a positive result and an increased risk of Spina Bifida. It would be two days before we could confirm the results with a genetic specialist. To say the least, we were frightened and angry. At the time it seemed incredibly unfair. Honestly, I was shocked but held out hope that it was just a nasty nightmare. There really wasn't much to say at this point because we really did not know a lot. As has become tradition, I hit the internet desperate to find answers. What I found out was quite interesting. First, neural tube defects were somewhat preventable. Research has found that fortifying foods with (or nutritional supplements of) folic acid has had a dramatic impact on the occurrence of these life threatening birth defects. Oddly enough, this struck a chord with me as in September there was another item of research that was published showing a dramatic (60%) decrease in the occurrence of neuroblastoma due to the fortification of food supplies with folic acid. Could this occurrence be the link? Could this kernel of knowledge lead to a new way of thinking about the prevention or treatment of neuroblastoma? In short, my answer is yes but there is much more research to be done. As I learn more I will pass it along, but, this is a very interesting connection and I wanted to pass it along. Could this anomaly with "Rice" be a message from above? Only time will tell. Regardless, the next few days would be tough and sleepless for Lynley and I. Finally, we met with the specialist who was going to perform a high resolution ultrasound to confirm or deny the existence of some of these most serious of birth defects. As we sat there in the room and watched the doctor scour the surface of baby "Rice" looking for any signs of a defect we were both amazed at how clear the pictures of the ultrasound were. The doctor took the opportunity to share with us everything that she was looking for. In amazing detail we were able to make out all of the parts of Baby rice from *its* brain, to *its* spinal cord, to *its* whoha (or lack thereof), and finally to *its* tiny little toes. Millimeter by millimeter she studied our little jewel and, by the end, she was able to find absolutely nothing wrong with baby "Rice", with the exception of the dates on which the triple screen were based. You see the triple screen is only effective between weeks 16 and 20 of gestation. And the exact date of conception is critically important in determining the appropriate levels of hormones in the blood on which the test was based. It was found by our doctor in shining armor that the test was based on hormone levels that were 4 weeks premature and it was likely that the test was false. She felt that she could say with a 95% level of confidence that there was absolutely nothing wrong and that a recalculation of the Triple screen would confirm her findings. Yesterday afternoon her medical opinion was confirmed as the triple screen came back this time with a negative result. Another high point in this seemingly never ending and dramatic roller coaster of life.
On another note, Sydney is doing well and thankful to have a healthy baby ????????(Place your bets now!!) in her mommy's tummy. The answer will come soon!!!
ANOTHER BATTLE IN THE WAR
6:20 AM 11/8/2003
Yesterday was a tough day for little Sydney. Once again, she has stopped eating and even simple tasks like getting her to drink a cup of her favorite juice, apple juice, has become arduous. As I had mentioned a few days ago, her weight has been of some concern. She is down from her original diagnosis weight of 11.2 kg to 10.4 kg. Although that may not seem like a lot, for a growing little girl it is starting to become worrisome. She has spent much of the past two days on the couch and although we try to distract her with other activities she chooses to spend most of her time watching television. "Finding Nemo" has become a staple movie in her daily diet of watching movies over and over again. I guess I should be happy that it is not another painful reviewing of Bambi. We have also found sores starting to develop under her tongue and she winces in pain whenever she puts a food item in her mouth. Nausea has also become a common occurrence and, yesterday, I would have been surprised if we actually kept anything down her. I know that this sounds like an awful lot of negative "goings on" but, wait, I am still not finished. Whenever Sydney tries to make a bowel movement she cries out in pain. She will usually run to her mommy or daddy whenever this occurs and we will hold her and cuddle her until it passes. She has also run a low grade fever (really low grade < 100 F) and has been just generally uncomfortable for the last day or so. So, yes, this is all rather bad news but the question becomes what do we do to change the tide and get our baby girl back on the upswing. We have started a mixture of a couple of methods. First, we have started fortifying her milk with Carnation Instant Breakfast. Although she has stopped drinking very much from her sippy cups, we have reverted to the use of an oral syringe. Last night we began this process in small amounts. We first gave her a dose of Vistaril, an anti nausea medicine. We waited about 30 minutes and then followed that with about 6 syringes (60 cc) of the instant breakfast concoction. At that point she did not want anymore and we decided to let her stop drinking to see if our method would work. We followed that with a stool softener. Luckily, she kept that down and with the exception of a few squeals about 30 minutes later she slept soundly through the night. This morning we will try the same method but try to increase her intake to about 200 cc's over about an hour. Of course, we will also supplement this with fruit or apple juice or anything else we can tempt her with. It is a fine line. We don't want to turn her off to food or medication but we are trying to avoid letting her slide into a state in which she would need to be hooked up to IV fluids and nutrition. I know that would make her unhappy and it would certainly make life more difficult for her. Earlier this week we also met with a nutritionist to come up with a game plan to put more weight on her. Suffice it to say that our current method is just one in about twenty that we will try should this not work. The key is to watch her very closely and be patient. We have been down this road before. It is just more critical now that she has lost so much weight. She simply never recovered from the losses that resulted from surgery. In addition to watching her nutritional intake we will continue to keep a close eye on the sores that have developed underneath her tongue. Previously we were performing her mouth care 3 times a day and we will be increasing the frequency to four to five times a day today. Her hinny has also been a source of concern as she has had some mild deterioration as a result of the chemotherapy. Thankfully we have "happy hinny" and that has maintained the deterioration at its current level. In fact, we have seen some improvement. Monitoring her temperature will also be an ongoing task throughout the weekend as we certainly do not want to see a fever spike. That would mean a first class ticket back to Cook Children's Resort and Day Spa for at least an additional week. All of these additions to our normal routine will certainly make for a rather busy weekend but it is much better than many alternatives that I can imagine. I continually remind myself that it could be worse. Thankfully, I have a purpose and I understand it.
A (10cc) BUSY (10cc), LONG (10cc) DAY (10cc)
5:40 AM 11/9/03
Yesterday went pretty much as expected. Lynley and I spent most of the day either on the couch or in the bed while the other shuffled medication and food back and forth from the kitchen. I don't think there was a five minute period throughout the day that she was not receiving something orally with the exception of the time that she spent sleeping. Here is the daily short list:
K-flex (antibiotic) - 1 teaspoon 4 times per day
Bactrim (antibiotic) - 3cc 2 times per day
Miralax - as needed
Zophran (antinausea) - 2.5cc every 4 hours as needed
Vistaril (antinausea) - 2cc every 4 hours as needed
Periodex (mouthcare) - mouth swab 3 times per day
Nystatin (mouthcare) - as needed
Neupogen (GCSF) - 55 micrograms subcutaneous daily
Tylenol - as needed except when febrile
Mylicon - as needed
Because Sydney has chosen not to eat, we have been supplementing her diet through an oral syringe. Primarily, she has been eating (or drinking) approximately 24 oz of apple juice, 12 oz of water, and 16 oz of Carnation Instant Breakfast through her oral syringe. Now, I could probably spend the time to calculate how many times we had to administer these concoctions through a 10 cc syringe but lets just say it was a lot. It was not just a partial lot either, it was a whole lot. In fact, in the time that I have written the above statements she would have received around 10 doses of any of the above food or medications through the syringe had she been awake.
Last night Sydney spiked a fever of about 101.5 F. 101 is our threshold to go the emergency room. So, at 6:00 PM, we paged the oncologist on call. Almost instantly, we received a call back from Dr. Murray. After updating him on Sydney's condition, he provided us with a one time stay out of the emergency room, fever card. He asked that we watch her carefully and that as long as her temperature went down and did not go over 102 F we should stay home. After a few hours Sydney's temperature had fallen to about 99.5 F and we all slept fairly soundly throughout the night. We are, of course, hoping that the fever does not reappear as it would almost certainly guarantee us a return visit for an extended stay at the hospital. The pain for Sydney seemed to be much less yesterday. I think the only times that I heard her cry were related to the passing of gas. We had high hopes of a bowel movement but I do not recall seeing such an animal yesterday. I remember being very excited at the thought of actual poo after one of her gassier moments but was discouraged that I only found foul odor and cleanliness when I peeked in her diaper. I guess it was my fault for getting my hopes up. It is amazing at how much of this journey reminds me of the first few weeks with Sydney after she was born. I have found joy in the simplest of things. I am so very thankful for my purpose.
WE JUST LOST OUR TURN IN NEUROBLASTOPOLY
5:20 AM 11/10/2003
Unfortunately, we did not have anymore "Stay out of the hospital free" cards in our ongoing game of Neuroblastopoly. So, this morning, here I sit in room 3006, 3N, at the lovely Cook Children's Resort and Day Spa. Yesterday was a better day for Sydney but by no means was she well. The day had played out much as the day before but she did have a few more bouts of activity and several poos. So, in some sense, there was cause for celebration. In fact, I was much happier that we achieved poo than the fact that the Cowboys had won yet another game. Boy, has my life changed or what? Sydney maintained a low grade temperature for much of the day. Once again, either Lynley or I sat on the couch with her throughout the day while the other shuffled meds and food back and forth from the kitchen. I was quite happy on the couch as the day before I had purchased myself the gift of a new remote control for the downstairs TV. I was quite content cuddling Sydney on the couch with my new found best friend, the One For All-Kameleon 8-Device LCD Touch-Panel Remote with Dynamic Screens and Icons. (That perhaps, may have been more exciting than the poo.) Regardless, the new TV remote, Sydney, and I felt very content to sit on the couch snuggling with each other. Throughout the afternoon we were relatively sure that we would avoid another hospital stay. Sydney gave every indication of improvement. Unfortunately, at just before 7:00 PM her temperature spiked up to 101.7. A call was placed to Dr. Murray and, sure enough, within minutes we were directly admitted to the hospital.
Overall I am fairly pleased to be back at the hospital. With Sydney losing close to 10% of her body weight, I am happy to be where she can receive IV nutrition and our wonderful staff of nurses can watch her more closely. It is also nice to know that Sydney will be under constant supervision to address her inflamed central line site, belly pain, and other minor medical anomalies. Sydney is ecstatic to be here and ran to the car last night as soon as she received the news that we would be going to the hospital. Where else does she have a fully stocked playroom, personal musicians, playmates with noodles, and the ability to sleep in the same room as Mommy and Daddy? In her eyes, life is good and she will get better because we say so. The only reason that I am not really happy about being back in the hospital is the nasty image of my brother-in-law sitting in my den, on my couch, fondling my new remote control. I knew I should have brought it with me. In paying due diligence to my purpose I forgot my newfound, although tertiary, love at home. I guess, all in all, things could be much worse.
A NEW BEGINNING
6:30 AM 10/12/03
First off, I should say that Sydney is fine but, as I sit here and type, I am in emotional distress. The hard drive on my computer has met its end. So, as I capture my thoughts in my diary today, my fingers fly across a keyboard that is not mine. I am experiencing a sense of loss as this computer certainly does not feel like my own. The next few days will include repairing my computer and rebuilding my laptop from near scratch. Luckily, I am pretty good at backing up my work so I should be in good shape. The things I will be missing are all of my contacts, my random thoughts, and my research. It is funny how attached I get to all of this nostalgic information but I am truly thankful that I have placed my diary online, as I am sure that, had it been sitting on my laptop amongst the volumes of other file, it surely would have been lost. So, although my computer, which is much like my "Linus blanket", is gone, I am determined to start over with a new lease on life - a new beginning. I guess we could call it a fall cleaning of all of my computer based random musings. Please don't be alarmed if you do not hear from me.
On another, but related note, my brother-in-law was nice enough to bring my new television remote up to the hospital. He thought it may comfort me in my time of technological need. It was a truly wonderful gesture between men. I have decided to call my new remote by the name "Squishy," for he will always be my little squishy. Remember, the only way for you to know that you are truly sane is to experience a little insanity. With the tragic destruction of my online life and computer death it is nice to have another piece of technology here to comfort me.
Sydney is showing signs of improvement. As I had mentioned before, this hospital stay has brought about many benefits. Sydney is now on nutrition which will not only help right now but we will continue to provide it as we go home to bulk her up before transplant. Sydney is also on several IV antibiotics to protect her from infection. For the most part Sydney is back to herself but we will remain in the hospital throughout this week. Another reason that this turned out to be such a lucky hospital stay is that we have had the opportunity to schedule many of her pre-transplant tests. Yesterday she had a hearing test, an EKG and an ECHO. Hopefully, we will see the results from those tests today. I do know that in at least one ear she has a full range of hearing.
Overnight Sydney had the placement of a Foley catheter. This is one of my least favorite propositions for Sydney as it is uncomfortable to say the least but we will be removing it in a couple of hours. The purpose for the placement of the catheter is to get a 12 hour urine test to determine her creatinine levels. The creatinine level will be a major determinant in the dosages of the consolidation chemo used before transplant. There have also been a large number of other blood tests performed and there are many additional scans awaiting us throughout both this week and the next. The fact that we are in the hospital makes these tests far more convenient both for us and the hospital staff.
Today Lynley and I are eagerly anticipating our "doom and gloom" speech from Dr. Eames about the stem cell transplant process. We have been told to expect about an hour of talks. During this meeting, we will hear about the transplant process, the side effects, and what to expect. Lynley and I have done an adequate job of research and know that this will be a scary and difficult process. As time and computer access allows I will share all of our learning here. I have a purpose.
DOOM AND GLOOM - PART 1
6:20 AM 11/13/03
Today I could write about thirty pages of text. Sydney continues to do much better everyday and assuming that everything goes well we should be going home this evening. We have already begun to see the differences generated by the IV nutrition. Her thighs have fattened up a bit and her weight is on the rise. Sydney will continue to be on TPN and lipids from now until transplant. We will give her a 12 hour IV infusion each night while she sleeps. It feels like we are fattening up our Thanksgiving turkey but it is all for the best.
Yesterday afternoon we had our meeting with Dr. Eames to discuss the upcoming transplant. All in all, it was better than I had expected but it really is all about perspective. Sydney has a tough road ahead of her. Over the next week and a half we will be in and out of the hospital just about every other day. There is a continuous set of scans and tests that lay ahead of us. The good news is that Sydney has done well thus far. Her EKG and ECHO have come back with good results and I am happy to share the fact that Sydney's hearing appears to be 100% in both ears. Today she will have another bone scan, a CT scan, and a bilateral bone biopsy and aspirate. We are hoping for and expecting to hear that she has no evidence of disease. We should have most of the results by Friday. Later this week she, Lynley and I will have our neuropsych evaluations. I think I will take "Squishy" with me for comfort. We are expecting to fail with flying colors but at the very least it should be an interesting report to read. At the beginning of next week we will have Sydney's MIBG scan amongst several other tests. Now on to doom and gloom.
We will enter the hospital on the Monday before Thanksgiving. Sydney will be receiving 4 days of chemo. This concoction will include Carboplatin, Etoposide, and Melphalin. She will be receiving stronger doses of chemo than ever before and we have been assured that she will get very sick. After the chemo she will have a 3 day resting period to get the chemo out of her system. Then, on the next day, she will receive the stem cells. That will become what they call day 0 and it is anticipated that, if all goes well, we could be leaving as early as day 21. It will take approximately 7 to 10 days for the stem cells to engraft and for Sydney to start making her own blood cells again. It will be several months, however, before she will really be out of the woods. That is the short story.
Doom and gloom!!!! Let me assure you that this process is not pretty. I was lucky in that I was prepared for much worse than what Dr. Eames had shared with us. The side effects of the consolidation round of chemo are fairly staggering but as with all of the drugs we have had before you learn to look past the really bad possibilities. We can deal with all of the fairly benign effects like low blood counts, nausea, diarrhea, loss of hearing, and the like. She will get mucositus and she will be in pain. Apparently, just about all of the neuroblastoma kids develop mucositus. It is basically an irritation of the lining of the mouth, throat, esophagus, and/or stomach. The chemo slowly breaks down this lining and sores develop. Although mucositus can be life threatening it will be the discomfort for Sydney that will be the biggest hurdle. We will be diligent about her mouth care which won't prevent the mouth sores but will be effective in shortening the life and intensity of the condition. It is a yucky proposition but we will do our best to manage her pain and keep her mouth clean. From what I understand it is the mucositus that keeps so many kids from eating for long periods after transplant. It is a learned behavior because everything that goes in their mouth will cause pain. We will be cleaning her mouth several times a day to slough off the dead skin and to give her the best opportunity for a quick recovery. It is just yucky, imagine having open blisters from the tip of your tongue all the way down to your stomach. Unfortunately, at this point in the morning I only have time to share the good side effects of the transplant. Tomorrow, I will have more opportunity to share the bad. So, until then, I have a purpose.
WE ARE HOME!!!
7:55 AM 11/14/03
Yes, we are home but this morning is chaotic. Sydney started her TPN and lipids last night at home and is very nauseous this morning. We are extremely busy right now but I will write more later.
EVERYTHING AT ONCE
I think everything happens at once. I am guessing that there are perhaps 5 major things going on my life right now and this morning has been fairly overwhelming. We arrived at the house last night at about 6:00 PM. It had been a grueling day of caring for an active Sydney and shuffling her from one test to the next. We are still waiting on the results from her CT and bone scans but we are expecting good news. After arriving at the house our home health nurse showed up to teach us how to administer her nightly IV milkshake. Let me just tell you TPN (Total Parenteral Nutrition) and lipids are no easier than making dinner. I was expecting a nice bag of TPN and a big bottle of lipids that we would hook up to her noodles, hang from her pole, and "Walla", overnight nutrition. But, no, that is not the way that it works. It is actually pretty funny to see how involved it is. First, we have to lay out all of the necessary medical apparati, medications, and supplements. It is very similar to making a recipe for dinner except for the facts that the recipe requires sterile conditions and exact measurements. (Perhaps, that is why my cooking is so bad!!) Once the ingredients and utensils have been laid out properly (even Emeril would have been proud!) you begin by loading up syringes with the various medications and supplements. We had four supplements in addition to the normal bag of PN, or parenteral nutrition. Each on of these supplements had there own method for drawing up the concoctions but perhaps the strangest experience was preparing the Vitamin C. Vitamin C comes in a dark plastic baggy to protect the contents from light. Inside is a small glass vile. There is no top or bottom and the liquid is completely sealed inside this solid glass vial. In order to extract the Vitamin C you must break the glass and extract the contents with a special needle to filter out any left over shards of glass. Then the horse/filter needle must be discarded and a smaller needle placed on the syringe. I am glad that Lynley was happy with the nurse and I last night as we were both dodging her as she flung the needle around. I would have hated to see the damage she could have inflicted had she been trying. I will have to remember to stay on her good side as long as we are administering TPN at home. Regardless, once all of the contents have been drawn up they are then injected in to the IV bag. As the liquid flows into the bag the solution changes from a clear liquid to a "Gatorade" green color. It is like a high school lab experiment. This is one of the reasons that we have always referred to Sydney's nightly TPN as her Gatorade and milkshake. Once all of the contents have been added we gently roll the bag to mix the contents. We have to be very creful to do it very gently to avoid creating air bubbles in the liquid. Once completed with our little chemistry experiment we are on to part two, Lipids. The lipids are much easier to prepare. The thick white solution has already been prepared by the professional chefs at the pharmacy. Although the bottle is ready to go an assortment of filters, back flow valves, contraptions and doohickeys must be hooked up to the TPN bag and the lipids. At this point it becomes much easier as we do the normal tasks of hooking her noodles up and turning the pumps on. Just another night at the Dungans.
I realize I should probably update you on Part 2 of the meeting with Dr. Eames but, unfortunately, right now, there are just not enough hours in the day. On a separate note, we have had a miracle in the world of neuroblastoma. The Connors, a family from Atlanta that I have become very close to, have had all of their prayers answered. Their son, Brandon, who was supposed to undergo a very difficult surgery on Wednesday with one of the worlds best surgeons heard the wonderful news that his tumor was gone. Yes, it spontaneously disappeared. It is an incredible story and I am ecstatic for them. I only wish this miracle was less of a miracle and more of the norm for the thousands of other families out there. Until then, I have a purpose.
9:44 AM 11/15/2003
DOOM & GLOOM - PART 2
As I had mentioned earlier this part is not good but, thankfully, it was better than I had anticipated. It is never good to hear that your child has a 10 percent chance of dying over the next month but, it is certainly better than the statistics that we received upon entering this world. There are several possibilities for life threatening effects than can occur throughout this process but, by far, the most common cause of death is due to infection. They say that about 80% of the infections actually come from the child's body. This is caused by deterioration of the body due to the effects of the chemo. For this reason we will be diligent by keeping Sydney spic and span. In the bone marrow unit we will be giving her a daily bath and being extra careful to keep her mouth and hinny clean. Many of these infections can be avoided but because of her ongoing immunosuppressed condition it will take a long time to recover. She simply won't be making the antibodies and infection fighting cells to win the battle.
During this time Sydney will also be exposed to other risks that are more of a direct result of treatment. The first is a result of the material used to preserve the stem cells during the thawing process. This chemical is the one that will make Sydney smell like rotten eggs for the first few days after transplant. Most likely she will also taste the foul sulfur smelling solution as it is infused. This will include such relatively benign side effects as headache, nausea and vomiting, diarrhea, fever, chest pain, and shortness of breath. Unfortunately, in some circumstances it also includes violent fluctuations in blood pressure, anaphylactic shock and death. Additionally, due to the processing of the stem cells the hemoglobin in the life saving bag of stems cells could rupture causing her urine to appear pink and could cause kidney damage.
One of the risks that scared me the most was the risk that the stem cells would not engraft. In other words the transplant would be rejected. I was happy to hear that this occurs more rarely than I had anticipated in autologous (from self) stem cell transplants. In the over five hundred transplants that our doctors have performed they only experienced one autologous rejection and the child survived as they were able to find another suitable donor very quickly. Engraftment generally occurs between days 7 and 14 after the transplant. I will be praying extra hard during this time. We have been witness to several families that have had rejection (not autologous) and have seen several blessed little ones die. This is a nasty proposition and one that I try and keep from the forefront of my mind.
One of the more popular(?) causes of death for children with neuroblastoma is VOD (Veno-Occlusive Disease). VOD is a disease of the liver which is caused by previous high dose chemotherapy (got that), radiation (not yet), prolonged transfusion therapy (we will see), or a combination of the above. The above reasons are why children with neuroblastoma are at higher risk. The protocols that these kiddo's are exposed to are typically more aggressive than that of many other childhood cancers. VOD occurs because the capillaries that supply blood to the liver start to deteriorate due to the treatment. The "skin" of these little blood vessels start to shed due to injury. This sloughing clogs up the capillaries and, basically, denies blood to the organ. There is no cure for the condition but as long as it does not get to bad it is survivable. Unfortunately, there is very little that they can provide outside of supportive care. There is no cure. The one thing that they try to do to prevent the condition is provide a continuous heparin infusion. The idea is to thin the blood to make it easier to get through the capillaries. This is not a proven method but there is definitely a group of oncologists than believe in it. Unfortunately, VOD does occur, it is not predictable and it does take lives.
Another less discreet side effect is unexpected organ damage. This can lead to multiple organ failure and death despite intensive care management. Typically this is due to the toxicity of the drugs and cannot be predicted although Sydney shows no sign of organ difficulty. These effects can be fairly immediate or can occur years later. As with many of the other side effects such as sterility, poor growth, poor thyroid function, hearing loss, and gland problems we may not see them for years to come.
Many have asked how I feel about all of this. My feeling is that it does not matter. They are the options and consequences that Sydney has lying before her. Whether I like them or not, they are our reality. I have no choice. The risks are outweighed by the risk of Sydney dying from the disease itself. The statistics clearly support that. In actuality, I don't care. The only statistic that matters is the fact that she lives. I will deal with anything else that comes my, Lynley's or Sydney's way. That is what I do. That is my purpose.
SYDNEY IS BACK
6:20 AM 11/16/2003
Wow!! Sydney is doing really well. After almost three weeks of off again on again hospital stays we had forgotten what it was like to have a healthy Sydney. She is back and she is back with a vengeance. Being around Sydney is not really something I can explain here. It is one of those things you have to experience first hand. She is happy, energetic, opinionated, and once again my spunky baby girl. She no longer just wants to lay around the house but is far more interested in getting into to anything she can possibly find. For instance, one of Sydney's coworkers gave Sydney some toys from the Disney Store. It came in a large box that is about 1' x 1' x 2'. Now I don't hesitate to say that she loves the toys but, ooh my, how she loves that box. She spends much of her days in the box, on the box, stumbling around with the box on her head, and fighting with the kitty over who gets to play with the box. When she is not doing that she is getting into something. It doesn't matter what it is but she will get into it. It is both wonderful and tiring to have her back full force.
She continues to fatten up. Her thighs no longer seem puny and they are now cute little two year old fat thighs. It is so nice to give her nightly GCSF shots in fat little thighs instead of skin and bones. It is funny but that really is the first thing I notice when she starts to lose or gain weight. I still have the feeling that we are fattening up our thanksgiving turkey but I am incredibly happy to see her look so much healthier. DeeDee came over yesterday to give Lynley and I a much needed break and she too was amazed at the transition.
Medically speaking Sydney continues to do well. Although the first thing she continues to do in the morning is throw up that is the only bad occurrence throughout the day. She continues to have a diaper rash but she is no longer complaining of belly pain or having trouble eating. For all practical purposes she is doing great.
Lynley and I are doing pretty well. We are both exhausted and are having trouble staying afloat. The last three weeks have been extremely busy and, although we have tried to be there when the other was in need, it has been difficult as we are both tired. Sydney still requires an overwhelming amount of care. Between all of her meds, her nightly GCSF shots, her TPN IV, daily bandage changes, the tests and scans there is little time to catch up. Lynley and I are a great team. It is just very tiring. I can only imagine what this journey would be like for a single parent or for a family with several kids and for that I am incredibly thankful. I always remember how lucky we are and how much worse things could be. I have a purpose.
LOOKING OUTSIDE THE BOX
5:53 AM 11/17/2003
That was a fabulous weekend. Lynley and I both looked at each other this morning and asked the other if we were ready for another week. Although we had a slight recuperation, I do not know that we got our batteries fully recharged. Regardless of my readiness for the week I am working on an attitude adjustment. We will see if it works but I am officially declaring that I am not tired, nor am I overwhelmed, nor am I nervous about the upcoming transplant. Now the only trick is to believe it.
Today we will be going to the oncology clinic for one of our checkups. We received the news that Sydney's CT scan was clean and are hoping to hear good news about her bone scan. We are expecting to hear that there continues to be uptake but we are hoping that it is significantly less. From my understanding, we should expect continued uptake as the bone scan detects bone destruction and Sydney's bones simply have not had the time to totally recover. Being an amateur radiologist (very amateur), I can tell you that the uptake appeared to be less but then again without the tumor in her body that would make sense. The difference from the first scan to the one that we had last week was amazing. It is hard to believe that it was the same little girl. Regardless, we have high hopes. The other dream and aspiration for today is that Sydney is declared medically "fat." We are hoping that the TPN can be discontinued and we can have a few noodleless nights before we enter transplant.
Sydney has now combined her "kittyness" with her newly found love for boxes. She is quite comfortable sitting in the middle of the room in her box meowing at all of those who meander by. She likes to drink in her box, she likes to eat in her box, and from what I can tell there is not a better place to watch a movie than in a box. I really do not care what anyone tells me. Until the day I die I will continue to believe that this strange behavior is an effect of her treatment and not just an odd little two-year-old behavior. I am really much more comfortable with that belief. For the time being I will deal with this side effect just as I have with the others. I will love her and cuddle her -- box and all. Boy, are we going to fail this psych evaluation on Friday. At least I will have squishy there to comfort me.
On another personal note, I am proud to say that I have been appointed to the board of the Children's Neuroblastoma Cancer Foundation. I am both honored and humbled by the opportunity. There are so many things to be done in the world of neuroblastoma and that I have been given the opportunity to make such a strong impact is exciting. In many ways it is also extremely comforting. It adds credence to my purpose and empowers me to do more. Over the past few months I have become close to Pat and Milt Tallungan, the founders of the CNCF, and developed incredible bonds with many of the other families struggling through these difficult times. This experience, a result of "Lunch for Life," our Neuroblastoma message board, and the previous works of the CNCF, has made this journey bearable. It has given me some peace and comfort in a world in which you would believe none of these emotions could exist. Perhaps, I will never be able to put the feelings in words that truly express how I have felt but I could not imagine making this journey without the help of the other families. I definitely feel a kinship with them but it goes much deeper than that. It is very similar to being a red marble in a box of blue marbles. Although I am still a marble, the fact that I am red is always an excuse to be different. Thanks to these other families I can be a red marble in a sea of other red marbles. I guess it supports the same old adage that there are strength in numbers and this strange world doesn't seem so strange anymore. I become strengthened by emotional support, medical information, love and prayer. This is not to say that I don't feel empowered by friends, family, and well-wishers that are outside of the world of neuroblastoma as they too have been my strength and comfort. I thank them for everything that they have done and continue to do. All of the prayers and support have been what has got me through many of the toughest of days. At many times it is nice to get lost in a world where I can be a blue marble again. It is just different to be told "I have walked in your shoes and you are okay" or "Your daughter lives in a box - that must be a direct result of chemo - I experienced it too." It doesn't necessarily matter where the support has come from. The fact is that we have been blessed enough to have it - and to have it in spades. My goals are that all of the families can receive this level of support and comfort and that someday soon no one will need it. I am so very thankful for my purpose. It is time to start thinking outside of the box.
SOMETHING IN THE AIR
5:40 AM 11/18/2003
Transplant is looming and neither Lynley nor I can seem to get it off our minds. It isn't that we are contemplating not having the life threatening procedure done. It is just that it is a risky proposition. We really do not have a choice for Sydney. We know stem cell transplants have a direct effect on long term survival and we know that it is in Sydney's best interest but it doesn't mean that it is any easier to endure. I think this is just one of those life moments. At the beginning of this nasty journey, my outlook was tainted. One of the questions I never asked (on purpose) was: What were Sydney's chances of survival over the next few months? I knew inside that the outlook was grim. I knew from my preliminary research that many kids did not respond to chemo. I knew that things could get bad very quickly. The difference was that I really did not feel any imminent danger. I was consumed by hope and I knew we were doing something to stem the tide. It never occurred to me that she would die early on. I think I chose to have this belief. With transplant looming and hearing Dr. Eames words that Sydney could die within1 month, it really hits home. I am starting to feel the fear again. It isn't that I was without the feeling it is just far more pronounced. Not only do I have my irrational fears but, now, I have the rational fears as well and they are all to real. I guess, in some ways, I am reliving the worst of this journey and, once again, I do not like it and I can feel the other Mark rising to the surface.
I feel like I have been living the last few months in oblivion. I have chosen not to focus on the doom and gloom. I don't think anyone could survive if they did. I placed all of my heart on the wellspring of hope and it was extremely effective. I was able to concentrate on Sydney and Lynley without the weight of fear. Now, as we get closer to transplant, I can not look at Sydney without some ill feeling in the pit of my stomach. I certainly have a heavier heart. Sydney is doing so well right now. She is adorable in every way and I am so thankful that she is not old enough to carry this weight on her shoulders. I would love to live in her oblivion. For the time being, I guess, I have to suck it up. I once again have to be strong for my family when I have no strength to give. It is what I do. It is my purpose.
On another note, the results from Sydney's bone scan are unclear to us. Both Lynley and I came away from the clinic with different impressions. We are hoping to clarify the information with Dr. Eames today. Currently, Sydney's white count is up but her platelets and hemoglobin are still quite low. We believe, however, that they are on the rise. Today we will be going to a meeting with nuclear medicine to have her MIBG infusion. This is the radioactive material given in preparation for her scan on Thursday and the reason we have been giving her SSKI (potassium iodide) drops three times per day. Sydney's weight is up to 11.5kg but we are continuing her nightly TPN IV to fatten her up some more. This week is going to be just as busy as we had imagined. I must remember that I have a purpose.
SYDNEY NOT WEIRD
5:50 AM 11/19/2003
Yesterday was another pretty good day. After Sydney awoke yesterday afternoon we went back to the hospital for her MIBG infusion. She was in a great mood and we had a pretty good time. As we waited in the waiting room in the radiology department, Sydney was having a great time asking both her mother and I what everything was. She would point to just about every inanimate object in the room and ask "Daddy what's this?" She must have asked sixty times in the thirty minutes that we sat there waiting. Now this was a normal two-year old behavior that I could deal with and I was very happy that she was not doing it in "catlish." Although, she did send out a couple of meows to her "peeps" during our wait. The waiting room was full and many of the other parents made eye contact with me with one of those smirks that said "Been there, done that." That was a somewhat comforting feeling but ended abruptly when the radiologist nurse came out to get us. As she entered the room to come and sit with us she said "Hey, I remember you. That's the fuzz sniffer." We all laughed and I turned to Sydney and whispered "See, they remember you because your weird." Apparently my whispers were overheard as the rest of the room started to chuckle. Sydney responded loudly with "Daddy, Sydney not weird, Sydney cute!!" Let's just say that the room was no longer filled with quite giggles but uproarious laughter. What can I say? That is Sydney and another example of why I am so blessed to have her in my life. She took an annoying, boring wait at the hospital and made it a special memory for the rest of my life. After the laughter subsided, we were taken back into the procedure room and we were in and out in less than ten minutes. Other than a quick stop by to see our favorite nurses on 3 North we were home shortly thereafter to spend another precious night at home with our precocious little snot. It was a needed break from an otherwise stressful week. I wonder if it is because both Lynley and I were a little frazzled that it was Sydney's turn to step in and make everything "all better." I guess she has a purpose too.
TOO BUSY TO WORRY
5:40 AM 11/20/2003
Today will be another busy day. This morning at 8:00AM we will disconnect Sydney's TPN and take her to the clinic to have a platelet transfusion. Currently, her platelets are at about 35,000 but she will need to be over 70,000 for anesthesia today. I imagine it will take about an hour to complete the transfusion at which point we will race over to radiology. There we will wait to meet with anesthesia and prepare her for her 12:00PM MIBG scan. The MIBG scan only takes about 45 minutes which Sydney could probably make it through without the use of anesthesia. However, since Sydney will be following the scan with a bilateral bone marrow biopsy and aspirate, we decided to have her put under for both of the procedures. The MIBG scan is one of the most sensitive tests for neuroblastoma. We are obviously hoping to see good results and substantially less uptake. The biopsy will immediately follow the MIBG scan and should only last about ten minutes. Although we will not have the biopsy results until next week we are expecting them to both be clear of disease. Our last biopsy and aspirate was after round two of chemotherapy and it was clear, so, unless there was disease progression, which is highly unlikely, we should be receiving similar results. I imagine that we will be home by 2:00pm or 3:00pm today, but then again, I am the eternal optimist. The good thing about being busy is that it keeps your mind off of all of the other useless mental wanderings. The trick seems to be to fall asleep quickly at night and hit the ground running in the morning. Thankfully, today my purpose is keeping me too busy to worry.
6:20 AM 11/21/2003
As I sit her typing this morning, Squirt is lying her head on my chest watching another rerun of Shrek. Bear with me, I finally have an excuse for typographical and grammatical errors. Yesterday turned out to be longer than expected but, in the end, it was well worth the wait. Yesterday evening we received the news, Sydney's MIBG scan came back negative. The MIBG is perhaps the most accurate test for neuroblastoma for those who are susceptible to it. The fact the Sydney's results were negative indicates that she is in a very strong remission. This is another "YIPPEE" moment. On Monday we should receive our bone marrow aspirate and biopsy results. This morning we will have our psych evaluation. I have got Squishy in my front pocket and I am ready for anything. Won't this be fun. I really am looking forward to it. Either way we will be dawning the doors of the loony bin at 8:00 AM for our meeting. After that we will be running back to the clinic for our final meeting with Dr. Eames prior to transplant. It should make for another interesting day. Well, I must run I have to go find a pair of socks that don't match and find the appropriate "loonywear!" Sometimes my purpose is a tremendous amount of fun.
TACO SHORT OF A COMBINATION PLATE
6:40 AM 11/22/2003
Yesterday we had the privilege of having our neuro psych evaluation. I say we, but, it was really all about Sydney. Overall, it was a great learning experience. It took a little over 2 hours and although Sydney was showing signs of tiredness I was truly amazed at her performance. It was shocking, really, as I lost my attention span after about an hour . I don't see how they can expect a two year old to hold her attention for that long but Sydney did better than I could have imagined. The tests were really very interesting. Of course, I really enjoyed them because I am highly analytical.
I think all children and families should participate in these tests. It should not be limited to kiddos going through transplant or a long term illness. Lynley and I learned our strengths as parents and our weaknesses in certain areas of Sydney's development. It is not that we are bad parents. There were just several areas of Sydney's learning that we realized that we could be doing better. We never would have known had we not participated in this little interview. It was wonderful in that it gave us some great ideas on things that we could do with Sydney while in transplant. I think we will find that Sydney was really advanced in some areas and weak in others in comparison to children her age. Most of her weaknesses we, unfortunately, can not control and are a direct result of her condition. I believe her analytical and differentiation skills will be advanced for her age. She was able to perform many tasks at a 3, 4 and 5 year old level. Some of the questions that she missed were more a result of her boredom with the task than an actual misunderstanding of the goals of the educational endeavor. One area that we will be working on with her is her ability to apply logic to objects outside of herself. She clearly understands when she is "in", "over", "in between", "behind", "on top", etc of something but occasionally she had difficulty in differentiating those things when dealing with an object that was not in relation to her. For example: if you told her to put an apple in between two oranges she may or may not get the answer correct. But if you told her to stand in between Mommy and Daddy she would get it correct every time. This isn't a developmental delay but rather an area of Sydney's learning that we simply had not concentrated on because we did not know to and, for this reason, I am truly glad we had the opportunity to have this evaluation. Sydney did spectacularly well at object recognition, verbal skills and following directions. She really did well at manipulating 3 dimensional objects and task oriented behaviors such as using blocks to build objects that she saw in a picture. I was truly impressed at the things that she was able to do and what I found was that she was able, in many cases, to apply her knowledge that she learned at home with mom and dad to new situations that required similar logic. Areas where Sydney had weaknesses were in her social development, more specifically her interaction with her peers. This makes sense. Sydney simply hasn't had the opportunity in the last almost six months to develop those skills. Sydney also had weaknesses in areas such as dressing herself and performing tasks that we do not allow her to given her condition. We learned a lot and are now prepared to supplement her learning so that we are better able to assimilate her into "normal" society once she defeats this monster. Once again, I am biased but I also have high standards, I was incredibly impressed with my precocious little twerp. I am very happy to have some more tools in my tool box to help her learn about our world. On a side note, squishy, was also their in tow. I think they were very impressed with my parenting skills and were interested in fitting me for a special jacket to commemorate my high standards. They said it was a beautiful white jacket and it would keep me nice and warm throughout the winter. Also, because only one of us would be able to spend the night with Sydney during transplant they offered me a special, comfortable padded room to stay in close to the hospital. What nice folks!!
Yesterday we also met with our oncologists for our final pre-transplant meeting. It was our opportunity to ask any questions related to transplant. We really did not have any. We know the statistics. We have done the research. We have talked to our oncologists and other families and we have a reasonable idea of what to expect. It will not be fun. I do not like it. But, it is what we will do. We also received some additional information about Sydney's tests and scans. The preliminary results from her bone marrow aspirates were that they were negative which gives us a strong indication that she is NED (no evidence of disease) going into transplant. This is phenomenal information and we are very happy to be in this position going into transplant. It provides no guarantees but it is a another milestone and an indication that we are winning the battle. We also developed a better understanding of the problematic creatinine clearance. Sydney's kidneys have been damaged due to the chemo and are not as effective at clearing the chemotherapy from her system. This means that the chemo will be in her system for a longer period of time so they will dose adjust the carboplatin so that the effective amount that is exposed to her body will be the same. So, although she will receive less chemo it will be just as effective as the maximum dose of chemo had her kidneys been working up to par. This condition "should" not effect her over the long term and it is likely that their function will return to normal. We are not particularly concerned and we are thankful that this is the only problem that we have discovered as of yet. We are prepared.
For us, today is Thanksgiving and we will be celebrating with our family. It will be a special Happy "Turkey" Day for us as we have a certain turkey to be especially thankful for. I have a purpose.
8:40 AM 11/24/2003
Thanksgiving was a success and it is even better this way because the Cowboy game will not be interrupted by Thanksgiving dinner as they will be playing today. Sydney is currently operating at about 99%. I am somewhat doubtful, however, that we will make it to transplant this week. She still appears to be about a quart low. It has been my experience that platelets are the last to rise and she still appears to be low on hemoglobin. I have come to realize that I am rarely right when it comes to predicting her blood counts but, yet again, I am going to go out on a limb and predict that her blood counts will not be sufficient to start transplant. At the earliest we will be entering the hospital on Tuesday and if we don't make counts we will be delayed over the holiday. That would be unfortunate as it would virtually guarantee that we would be in the bone marrow unit over Christmas. As it stands now, there is a slim possibility that we could make it home before Christmas. I guess it really does not matter. It is nice to be spending time with Sydney right now. I am really enjoying my purpose.
HAUNTED BY STUPIDITY
6:10 AM 11/25/2003
It has been a nice relaxing weekend. To be honest my mind has not been very consumed with the upcoming transplant. I think about it often but it only skims the surface and then I go on to thinking about something else. I wonder if it is a protection mechanism of some sort. I feel the need to be doing something - like researching or studying or preparing - but I can't figure out for the life of me what it is. I have done the research. I have studied the statistics and all that seems left to be done is to pack. I want to remember this feeling of peace as I know the next couple of weeks will be filled with quite the opposite.
There are strange thoughts that come across my mind but I suppress them quickly. They are useless, irrational thoughts that provide me no value. In fact, they can make me sick to my stomach if I let myself focus on them. I get mad at myself for even having them but I have come to realize that they are quite natural for many. They are the gruesome thoughts. The thoughts about what happens if something goes wrong. Is this the last time I will cuddle with her like this? Is this the last time she will ride my back like a cowgirl? and then, of course, the "What ifs?", the "What will I do?", and the "What will I say?" They are all nasty thoughts and there is a certain amount of guilt that goes along with each one of them. It is if I am blaming myself. It is the fear that you, as a parent, are willing the worst to happen. I try and brush it off and think about something else but the fact of the matter is that it happens. I had similar irrational thoughts during the first rounds of chemo and, especially, before her surgery. It is an evil byproduct of being a parent of a child in this condition. I suppose talking about it may help. My current belief is that if I write them down I will see how stupid the feelings are and it will discredit them. It will make them go away. This method of dealing with some of the strange byproducts of this roller coaster has seemed to work in the past.
It is strange because I know that I can not will Sydney to be cured. But, it is because parents hang their hats and their hearts so completely on hope that I believe this condition exists. You hope and hope and hope for a miracle. You hope that your child is different from everyone else. Because we believe in hope. Because we believe in miracles. And because we believe in divine intervention. We must believe in the opposite. That is where I think these thoughts come from. If there is some "force" out there that is going to cure our children, there must be some "resistance" and that is why I find myself lost in many of these irrational thoughts. I am by no means a psychologist but I believe it to be natural and for many others out there, I know that it is. Once again, it is an unfortunate byproduct, but at least it is not based on reality. My purpose, however, is.
5:50 AM 11/25/2003
Sydney's counts came back yesterday at what I believe to be a somewhat acceptable level. Her platelets were at about 105,000 and her ANC was well above 1000. These are the two transplant thresholds that I am aware of. This morning I will be running another blood sample up to the clinic to verify that her counts are not falling. Since Sydney had a platelet transfusion late last week we have to be able to show that the counts are increasing on their own instead of being on an artificial transfusion high. I anticipate that Sydney's counts will continue to improve so I am guessing that today will be the day that we enter the bone marrow unit. Sydney's white counts are still low, however. So, that could throw a wrench into our plans. I am not sure how the white count factors into transplant rules.
I spent much of my time yesterday preparing for transplant and getting our lives in order. There is a lot to be done when you know that you will not be "living" in your house for a month. I even found some time to do some more research. I spent several hours combing through the archives of the neuroblastoma listserv reading the accounts of parents. I am disheartened to say that I did not learn anything new. I am happy, however, to see so many kids survive this. I am comforted by the fact that other parents have felt many of the same worries as myself. Mostly though, it was confirmation of what I already knew. This will be a hard road for my little baby girl. At the least she will get very, very sick and at the most -- well I don't want to talk about it. It is time to dawn the cape as super dad and be there to love and comfort her. It is time to be strong for my family so that they know all will be okay. It is time to put my purpose to action.
HOME, SWEET HOSPITAL
9:00 PM 11/25/2003
We are back at Cook Children's residing in the posh 3 North Bone Marrow Unit. We have our own balcony which provides a viewing of our room for those who stop by to see Sydney. Honestly, I feel a little like being one of the animals at the zoo but it is still a pretty nice feature. Most likely, we will be starting chemo tomorrow evening. There has been a flurry of activity as we have begun to nest and learn all of the new rules. Unfortunately, Sydney has once again had a Foley catheter placed to check her creatinine clearance. It should be an interesting night. I am hoping for a quiet one.
PREPARING THE BATTLE FIELD
6:30 AM 11/26/2003
Well, another wonderful day has arrived. Sydney has slept comfortably throughout the night and we have as well. Today she will be getting a blood transfusion as her hemoglobin has fallen to about 7.4. Other than that, most of the day should be relatively quite. She is receiving a plethora of medications. I always realized that it would be different in the bone marrow unit but I really have been surprised by their proactive nature. She is receiving no less than 10 different preventative medications and antibiotics. Most are "yummy" but a few are "yucky" according to the Sydney tasting meter. Regardless, she is downing them like a champ. This afternoon she will be starting her first day of chemo. It will be a combination of carboplatin, etoposide, and melphalan. All of which are yucky on the Daddy chemo scale. Today will mark our first hurdle as we hope she does not have a reaction to any of the new agents. We are hoping for a nice quiet day and praying for an uneventful night.
Our room in the bone marrow unit is fairly large. We have arranged the furniture to allow for a big empty space in the center of the floor. This is our play area. We have a large foam rainbow colored mat for the three of us to exercise and play on. The nursing staff was also nice enough to donate a large cardboard box to the cause. This is Sydney's playhouse which she has decorated to the tee, both inside and out. Although it will not be a permanent fixture in our room it is a nice gift to keep her occupied while she is feeling well. Lynley brought a suitcase full of activities and I imagine we will be spending much of the next week on the mat playing with her. The first seven days should be some of her best during our stay and we will take every opportunity to ensure that they are good ones. We are also in the process of establishing routines and rules so that when she is sick she will have the comfort of these routines. For example, we will take two walks around the halls everyday. We have set up a course for Sydney to walk and tasks for her to accomplish along the way. We have heard that exercise can be valuable in her recovery and God willing we will try to keep her doing these activities whenever we have the opportunity. We are following much of the advice that we have received from others who have walked in our shoes. I like to call it "preparing the battlefield." We shall see. I have a purpose.
7:50 AM 11/27/2003
Sydney has officially started her consolidation chemotherapy. At about 11:30AM yesterday morning the first few drops of Melphalan started dripping into her veins. The overnight creatinine clearance indicated that Sydney's kidneys were working up to par and therefore she is receiving the standard dose instead of a reduced dose. It is good news to know that she was heading into transplant with everything in good working order.
Last night I was elected to go home, as only one of us can stay with Sydney overnight. It was the first night that I had spent away from Sydney while she was in the hospital. After experiencing it I have decided that I do not like it. In fact, I sleep better at the hospital. By the time I got home performed all of my nightly tasks and got in bed there were only about 6 hours before I needed to be back. So, long story short, I got about 5 hours of sleep, most of which was not sound as I dreamed and thought about what I was missing back at the hospital. What I missed was a nice night of quiet sleep both on their part and on mine. Tonight will be Lynley's night to go home but, knowing her, I imagine she will just hide in the suitcase. For some reason, the rules seem to apply more for Daddys than Mommys, but, I shall take a stand.
Today is Thanksgiving and although we already celebrated last weekend I imagine it will be another opportunity for us to be thankful. We really have some serious thanking to do this year. Reflecting over the last 6 months it is hard to remember all of the wonderful things that people have done for us. Yes, Sydney has cancer and I am not particularly thankful for that but the experience has been the most profound in my life. I am thankful for the experience in that it has changed who and what I am. I like the person I am now far better than the man I was before and I believe that it has been this journey and all that it encompasses that has spurred the transition. It is not the experience of enduring treatment as a parent but everything that lives on the fringes of this experience that I am truly thankful for. I am thankful to all of those who have supported us with friendship, prayers, and comfort. I have been amazed at the wealth of caring and compassion and it has certainly changed my perspective of what is important in life. As I mentioned early on, I never truly realized how much of an effect even small gestures had when provided in such volume. This experience has been easier and more bearable because of this. It has allowed me time to focus on what is important and spend happier moments with my family. It is if people's concern has lifted the wait of worry and stress off of my shoulders. I can not imagine walking this road without it. That is something to be thankful for.
I am also very thankful that I still have Sydney, Lynley, and "Rice" beside me. I realize that it is truly the greatest gift of all and I never forget how lucky I am. It really is that simple. Thank you for my purpose.
POINT OF NO RETURN
Well, I guess if you have to pick a point of no return we have either hit it or we are getting very close to it. Sydney is now entering day 3 of her consolidation chemotherapy. She is in high spirits and seems to be doing very well. Right now it is very easy to have a positive outlook. She is happy, healthy, and active. It is somewhat amazing to think that she is going to become so very sick. For right now we are having fun playing, running up and down the halls, and playing on her mat. She is extremely talkative and we have had hours and hours of stimulating toddler speak. Right now, I am relatively unconcerned. I have tried to worry in the last couple of days but I seem to be incapable of it. I am positive of our success and I have no doubts. Wow, what a big statement. Is it insanity setting in? Who knows? I know the facts and understand the consequences and what is to occur but, right now, I am fearless. What a handy emotion to have right now. I guess I am just saving my worries for later. For now, I am off to have fun with squirt. No worries. I have a purpose.
PLEASE KEEP YOUR ARMS AND LEGS INSIDE THE RIDE AT ALL TIMES
Well, just as soon as I declare my worrilessness proclamation it appears that the ride on the chemo twister has begun. Sydney is still loving, cute, and adorable but, unfortunately, she is also pukey, nautious, and unsettled. It is time for me to dawn my cape and assume my alter ego as SuperDad. For the time being, I am still of one personality but I know the other Mark is looming inside me ready to pounce at any moment. For the time-being I am content to provide Sydney with my finger to be held in her tightly clenched fist. "Daddy hold finger" is becoming a common utterance and the clue of what is about to begin.
Medically speaking, Sydney appears to be doing pretty well. Her hemoglobin is 11.1 and her platelets are at about 56000. I imagine a platelet transfusion will occur in the next couple of days. Her BUN is on the low side of normal but gives us a good indication that her kidneys are doing the job necessary. Her albumin is a little on the low side but everything else appears to be normal.
It is once again time to focus my attention back where it belongs, for I have a purpose.
Until the next time......