(More Antibodies (CH14.18)
5:11 AM 7/1/2004
I hesitate to say this because it always seems to get me in trouble, but, Sydney seems to be doing very well. She is, once again, nearing the end of this round of oral chemotherapy and, this time, everything seems to be in good working order. Her skin is holding up fairly well, her appetite is up, and, for the most part, she seems to be very happy. This gives us time to concentrate on things that we have not really done in almost a year. We get to look into the future. We get to plan! At the end of this month we will be traveling to Chicago for the Children's Neuroblastoma Cancer Foundation's Conference. I am really looking forward to it and it is nice that we will be able to go this year instead of sending Monty in our stead. The docket for this year's conference is jam packed with presentations from several of the most prominent oncologists and researchers in the neuroblastoma world but I am really looking forward to meeting many of the parents and the kids that I have become so close to over the past year. We have spent hours, days, weeks, and months talking or writing to these people. They have really become family and it is so nice to have them as a resource when you are trying to make decisions in that strange world. As I look back over the past year it will be sad to see many of them will not return as there were many lives lost this year. I haven't talked about it in quite a while but there are several on the list that have earned their wings as of late and, unfortunately, there are several whose wings appear to be growing as we speak. After a year of being exposed to this first hand it just never gets any easier and the fact that these innocents are losing their lives just gets harder to take. There is still no rhyme or reason. It just is.
Dudely (a.k.a. Graham) continues to thrive although we think he may be coming down with an eye infection. Over the past couple of days his eyes have regularly started producing "gunk" and we noticed last night that the areas around his eyes were starting to appear puffy and red. I am guessing that a doctor's appointment is in our very near future. In the big scheme of things it really is not a big deal but it is something that we are watching closely. Other than the eye thing, though, Dudely is doing great. He is perhaps the happiest child I have ever seen and as long as he has a bottle nearby he is apt to put up with just about anything. I think he is picking up the "jabbers" from Sydney. When he gets on a role there is just nothing that can be done to shut him up and he will sit and talk endlessly to you. At this point we have no idea what he is trying to communicate to us about but, whatever it is, he is very serious about it. To be honest, I think he is trying to tell us a long winded joke because at the end he will often bust out in a large belly laugh. Yep, he is a keeper. A talkative, hungry little mini me. Well, enough jabbering. I have been as long winded as my miniature purpii and it is time to face the work day.
5:20 AM 7/2/2005
This is a jam packed morning and, for better or worse, there is not a lot to be said. Sydney continues to do well. We are in the process of looking for preschools for her. You see, I told you yesterday we were looking into the future. The key for us is to work on her social skills and to get her involved in some structured learning. We know it will be an interesting transition but the time is nearing when we will be officially "normal" again and, therefore, it will be time for us all to face the grind. Dudely's eyes continue to be massive little producers of gunk. I think we will need to get it addressed before the weekend so I am eagerly anticipating a call from Lynley this morning which will let me know when and where. Other than that, we are good to go and looking forward to a nice weekend at home. Well, they are anyway. My "honeydo" list will keep me entirely to busy. Well, it is time to go. My purpose awaits.
5:10 AM 7/6/2005
It was a very busy holiday weekend and today marks another momentous occasion -- Lynley's birthday. Now I am sure she will be evil and bitter as she welcomes a new (and larger) digit to her age but all I have to say about the subject is that she is as beautiful as the day I married her and she only gets better with each new year. Lynley, too, is like fine wine. But enough about that subject as I know I will say something that is sure to get me into trouble.
Sydney has officially completed her fifth round of oral chemotherapy. The end of this round was difficult, but manageable, for her. For the last four days she decided that she was no longer going to take her pills. I can't say that I blame her but, unfortunately, that was just not a realistic option. For some reason, she just stopped swallowing them. It was a take back to the days when we first started the Accutane regimen. No matter what we tried she just had no interest in taking them. I had suggested that we retreat to the surefire "chew-chew" train method but Lynley had none of that. Her concern was that Sydney would stop swallowing the pills whole and that we would have to start the (2x) daily hour long process of bribery and dancing to get her to chew up the pills. It has also been suggested that the pills are more effective if swallowed whole and it is also known that they can burn the lining of her esophagus if the capsules are ruptured in the mouth. There were several times over the weekend where she sat in her high chair for hours on end while we waited and re-attempted to get her to swallow the pills. Nothing could be more frustrating for her or for us. The pill taking sessions were often interrupted with crying sessions but, in the end, both Lynley and Sydney would always recover. I felt completely useless. I really could not help. Ever since Lynley started administering the pills by the swallow method I have had to pretty much go into isolation during the episodes. You see, every time I walk into the room she wants to do the "chew-chew" dance and we would prefer her to swallow the pills. So, long story short, I have been ostracized from the twice daily pill taking ceremony. Do I sound bitter? Not really. I do like being a part of everything I can in Sydney's life but I know it is in her best interest if I am sometimes out of the picture. The good news is we now face two weeks of -- nothing!! Which will be followed by her very last round of oral chemotherapy. The end of treatment is drawing very near. My purpose, however, lives on.
COMPLETE JOY AND THEN TERROR
5:31 AM 7/7/2004
Lynley had a great birthday. I think part of the reason was that she decided to tell everybody it was her fortieth birthday. The rest of the day everybody told her how great she looked for turning forty. Sydney and I went out with her to lunch with a bunch of her work compadres and then in the evening DeeDee came over and we met the Robertsons for an early dinner at Edelweiss. The kids had a wonderful time dancing to the German folk music and Sydney took a particular liking to Bernd, the owner and headliner of the folk extravaganza. She spent most of the evening sitting in her high chair at the table dancing back and forth and she would never miss an opportunity to blow him kisses whenever he would sing in her direction. She was having a blast and that, I think, was the best birthday present of all. After everything that she has been through, seeing her so incredibly happy is quite a heartwarming experience. As I looked at her, I was, honestly, just about in tears of joy. It is hard to explain but that two hour period of watching her was better than any round of golf with my buddies, the joy of a success at work, or any night that I have had out on the town. Rarely would I prefer to be doing something without my wife and children but this was truly a perfect example of why I prefer to spend time with them instead of playing golf or going out with the guys. It is too worthwhile of an experience to ever risk missing. Do I make my point? Do you feel the incredible joy that I experienced? Do you understand that life could get no better? Do you realize that this is the reason for living? -- And then it happened!!
It is a complete one eighty. It is that moment that takes you from complete peace to sheer terror. As we traveled home Sydney started screaming in pain. "My leg, owie, My leg!!" At that moment there was nothing I could do other than to race home. Her leg was not caught. It did not appear to be uncomfortable. She was in agony and the crying was getting worse. As I drove home as fast as I could I went through the parental math. What was happening? What led to this moment? Why was she in pain? After living through the last year with Sydney I have become rather adept at this process. It is something you just do. This is another hard item to explain but you leap into action without thought. The process of dealing with a sick child just happens. It requires no thought. In those moments you know exactly what to do and you do it, calmly and decisively. In the background and somewhere in the back of your mind you are doing the math. Although your actions come naturally your mind is in a totally different place altogether. With NB in your past your mental focus is particularly acute. You can taste the fear and feel your heart sink. It is an incredible and complex set of emotions that reeks havoc on your body -- all at once. So, why the fear? One of neuroblastoma's tell tale indicators is leg pain. It is a side effect of the marrow filling with tumor cells. This is the main symptom that Sydney first presented with and the one thing that is sure to send a NB parent into shock. It is not a good thing and it sends your mind racing. What could the pain be from? Here is what we know. The day before yesterday, Sydney had been sitting in her high chair and was complaining that her toes were tingling. She had been in the chair for a while. We wrote this one off and assumed that her legs had fallen asleep due to the position that she was sitting. When this occurred. We quickly removed her from the seat and took her to the sink to run warm water over her legs. This wasn't a medical fix but running water is known to calm Sydney. Within minutes her attention was elsewhere and the tingling was never mentioned again although the incident was tucked away in our mental filing cabinets. Now last might was a bit different. At dinner she had complained of leg pain in her high chair. From what we could gather (or what we assumed, rather) was that she had gotten her thigh and foot caught in the chair while dancing to the music. We readjusted her and not another sound of discomfort was uttered - ntil we got in the car. In the car she was in obvious pain but it was not attributable to anything at that moment. Her leg was lying normally. The seat belt was riding appropriately at her hips. There was no apparent cause. Did she bruise it earlier? There were no discolorations on her leg. Was she experiencing "growing pains"? She seems a bit young. We had no answers but, once again, we stored it in our mental filing cabinet. Upon arriving home she was still in obvious pain. She asked for ice to put on her leg and we obliged. For the rest of the evening and until we put her to bed she would continue to complain but the severity of her discomfort was obviously greatly reduced. After putting her to bed she woke up three times screaming and writhing in pain. We put her in our bed for a while but she opted to play with our tired bodies instead of relaxing and falling to sleep. Later at night we took her back to bed and we have not heard a peep out of her since. So what does all of these mean? I don't know but it is scary as hell. We are going to call the clinic this morning just to keep our doctors informed and see what there plan of attack is. I imagine it will be to wait and watch as only time will tell. I don't like it. Not one freaking bit. My mind is filled with purpose and my body, of shock. I have a need to know.
WAITING AND WATCHING
6:00 AM 7/8/2004
Yesterday morning we got a hold of the doctor's office. It was decided that it was a good idea to bring her in and have her checked out. Fortunately, we already had a clinic appointment scheduled first thing this morning. I am also happy (well, cautiously optimistic) that Sydney's pain could be attributable to any of the factors that I mentioned yesterday or, for that matter, any one of a hundred reasons that a child could experience leg pain without having neuroblastoma. So, why do I feel a little bit better. I feel better because Sydney did not experience the pain yesterday. She did fall down and scrape her knees on the concrete and she did complain about that, but the terrifying pain, the really scary one, did not resurface itself in the middle of her left thigh. I don't know why, but that seems good to me. It is somehow comforting. My mind can still make the cause seem like neuroblastoma. After all, the pain before diagnosis was sporadic as well. So were the fevers. Remember those, yes, just like the ones we had a couple of weeks before diagnosis. I am watching very closely and I am looking for the tell tale signs but luckily, yesterday, none of them appeared. So, where do we stand? I really don't know. Is it better? I don't' know that either. She had a good day (pain - wise) but it still can not erase the experiences of the last few days. Something is causing intense pain in her left thigh. It happens sporadically but it is happening and it does continue. We need to figure this one out.
As far as Sydney was concerned life was and is great. She has now been off of the Accutane for several days and her mental state has returned. She seems comfortable and happy with life. Yes, Sydney had a great day yesterday. That is also refreshing and that helps my mind to be more comfortable with the pain. After all, I still get much of my strength from her. My purpose is strange that way.
WHAT A PAIN
6:15 AM 7/9/2004
Early yesterday morning Lynley and I scooped up the kiddos and headed to the oncology clinic. It really was nice to get the opportunity to sit and talk to many of the doctors, nurses, families, and friends that we have missed as of late. It is quite a transition when you are not in the hospital or going to the clinic several times per week. In some ways it felt like we were seeing some long lost friends. Both Sydney and Graham were in great moods and surprisingly our visit went relatively quick. Simply put, Sydney is in perfect running order. She has continued to put on weight and although she has not achieved a weight that would be appropriate for her age and height for a "normal" kid she is doing well. It has now been two days since we have seen hide or hair of the intense pain. It is the belief of the benevolent Dr. Handsome than the pain is in fact due to the Accutane. He says that although the side effect is not reproduced in any of our documentation it is in fact a fairly common side effect and a couple of other kiddos have had this type of reaction. Furthermore, some kids even require a dose reduction to curb the pain. This would explain the timing of the pain and the fact that I remember this occurring about 1 month ago. The trick now is to wait. We hope to not see the pain return over the next two weeks. This would solidify the position that it is in fact the Accutane and not something more sinister. For the time being we will watch her closely. We will look for swelling, problems with her joints, and the like. In addition, we are left with treating the symptoms with Tylenol or Ibuprofen. I can tell you that this is a huge relief. I still don't know if I buy entirely into the theory but at this point I am willing to believe anyone that has a good reason for it not to be caused by neuroblastoma. In the back of my mind, however, I will not rest and relax until the pain goes away and stays away.
I spent much of the afternoon meeting with Doug Kingswriter, the CDO of the National Children's Cancer Foundation (the primary funding body for the COG) and one of the architects of CureSearch. We discussed what was needed in the world of pediatric cancer and more importantly, to me, what is needed in the world of neuroblastoma. The NCCF is a large organization that funds research through the COG. Basically, from what I gather, they receive money from private funding, the NCI, and the government and use the funds to support the COG and trials like the ones that Sydney has participated on. Many have harsh opinions of the NCCF due to their history, their ex-leadership, and clear lack of support but I was pleased to see that the new regime was committed to helping the families and searching for the cure. I am not particularly content with how they fund neuroblastoma. The percentage of funds that they commit to Neuroblastoma is well below the rate of occurrence and at least threefold under the mortality rate (per capita). Of course, I am biased, but I believe that if you really want to make a significant impact in reducing the mortality rate of children's cancer, in general, you have to commit funds to the cancers that have the highest mortality rates per capita and, so far, Neuroblastoma continues to be left out as a bastard stepchild. I was happy to hear, however, that they are committed to changing this in the future. I really enjoyed my time with Doug and I was inspired by his commitment to institute change. I believe he will lead the tide to an already new and better NCCF which, in the end, will benefit all children of cancer. There is no doubt in my mind that they are committed to the families and the cure of childhood cancer. For the time being, though, I thank God everyday for organizations and people like the Children's Neuroblastoma Cancer Foundation (CNCF) and Pat Tallungan. Right now, there is a place for families of neuroblastoma, there are people to talk to, and support for everyone touched by this disease. There is a funding body committed to eradicating neuroblastoma and although small we will make the difference. Well, enough. I am off my pedestal and it is time for another busy Friday. My purpii is out of pain.
GOING REAL POTTY
5:20 AM 7/12/2004
First off it is important to note that Sydney has not experienced any pain in her legs in the last 6 days. It appears that Dr. Handsome was indeed correct in his assumption that the pain in Sydney's thigh was due to Accutane. For that, we are extremely thankful. Sydney's appetite has continued to increase and her belly now protrudes from the front of her body and "love handles" are appearing over the sides of her panties. Yes, you heard me correctly. I said panties. Not diapers. Not pull-ups. But, real full-fledged "Dora the Explorer," glitter painted, little girl, no peeing in my diaper anymore, panties. Yes, we finally decided that her stools had finally firmed up enough to give it a shot. Sydney is now day 381 post-diagnosis, day 219 post-transplant, and day 1 post-potty-trained.
Yesterday morning started normal enough but, by the end of the day, I had been forever changed. Early in the morning I scrubbed the pool and Lynley did her usual Sunday chores around the house. Sydney woke up and we all congregated on Mommy and Daddy's bed for the premier showing of "Once upon a Potty." In addition, we also had books to read, "My Potty" and "I am a big girl now" and, in the end, a final presentation of a brand spanking new pair of "Dora the Explorer" cotton panties. It all seemed simple enough. We have prepared. But the day would not end there and, as we found out, success can be both elusive and sporadic.
Sydney did a great job. Early in the morning she was quite excited about the theory behind the potty and was anxious enough to have several successes. She had successes because she pretty much stayed glued to the potty. As the morning wore on, however, remembering to go to the bathroom became the challenge and her excitement waned. We would check with her often - usually every twenty minutes or so. So much so, I think she became irritated. We got to the point that we would ask her if she needed to go potty, she would deny the need adamantly, and then thirty seconds later leave poor Dora scarred for life. Yes, Dora needed more than a map to get her out of those messes. At nap time we had the chance to regroup. The plan of the day became - forced preemptive potty strikes. Although this would not help her identify the need to go potty. It gave her the feeling of success. The afternoon would only be complicated by a few mistakes and by the end of the day we were all pottyed out. At bedtime, we would wrap her in a diaper to help her through the nightly flood.
Just before we tucked her into bed I finally got the opportunity to take a shower. I have always found it relieving to go to the restroom prior to a shower. (I know, too much information but it is part of the story line!) And, so I did. I closed the door to the bathroom, stepped up to my porcelain friend, and took the nice, quiet opportunity to relieve myself. What I did not realize was that pottying was now a part of the public domain. Sheer terror filled my body as I heard the pitter patter of little Sydney steps. My mind raced to the lock on the bathroom door. Damn, it was busted. (I will get that fixed first thing today.) The door flung open and Sydney was there to watch me in my full glory. I was caught by surprise. Adult pottying and showering had always been a private experience. As I stood there relieving myself I tried to shuffle my feet to block dear Sydney's view but she would have none of that. I could here Lynley laughing in the other room. Sydney's head peered around the edge of the toilet bowl. Her inquisitive head cocked a little bit. I do not think she had ever seen a man go to the restroom before. This felt like the longest pee of my life and I was caught. There was no stopping now and I was focused intently on my aim. If I was going to be studied I was at least going to be accurate. Sydney looked on in amazement. As I finished Sydney cracked a glorious smile. She was so proud. She shouted to her mother "Daddy went real potty!" She followed that up with "When Mommy and Sydney get big we will go real potty, too." Apparently, in her mind, standing is the difference between real and fake pottying. Amidst snickers I began the clapping to signify success. We all participated. Rosey-cheeked and with a chink in my protective embarrassment armor, I scuttled myself into the shower. Over the sound of the water running I could here Lynley telling Sydney about the difference between boys and girls going potty. I tried to let the experience drift from my mind but it wouldn't, eventually I recovered from the traumatic experience, and I found myself laughing for the next thirty minutes or so. After my shower we put Sydney to bed. It was all that we could take. Now, I tell you this story not to embarrass myself and not to express my joy at the successes that Sydney had on her first day of potty training. I tell you this story so you have to hear the word potty as much as I did yesterday. I have now used the word potty 27 times in this update to my diary. I fear potty is now my life. Potty is certainly on my mind. In fact, I think I will have to end this entry due to my now overwhelming need to go potty. I would look to my purpose for strength but I fear it too may be on a potty break.
A DRIP FROM ANOTHER END
4:50 AM 7/13/2004
Sydney seems to be coming down with something. The drip from her nose has started to change from clear to an off-yellow color. I first noticed it yesterday afternoon. She sounded funny and it took me off guard. I am so used to hearing Sydney's voice without the muffle of congestion that it took my a moment to figure out what the difference was. Yes, Sydney may have neuroblastoma but, all in all, she has been a pretty healthy child. With all of the isolation she has experienced over the past year the common cold has been elusive. Apparently, that has now changed. It will be interesting to see how she feels today. Last night as we drifted to sleep we could hear the sound of muffled coughs coming from the next room. We are, of course, hoping that this is just a little bug that is passing by and not something more sinister. So far, she has not spiked a fever and both her appetite and energy levels continue to be high. We have a pretty good idea of what and where this could be from. Last weekend and pre-potty training we had an extremely busy Saturday. Sydney had three birthday parties to attend. The first was for Sophia, the four year old daughter of Jake and Lynita. Sophia had a birthday party at the Forest Park Pool. Although Sydney could not swim due to her noodles she had a blast wading with me through the kiddy pool. All in all there where about 15 kiddos and all seemed to have a great time. As usual, it did not take Sydney long to overheat and it was time for us to leave within about an hour and a half. The second party we attended was for little Miss Tate, the 3 year old daughter of Dan and Suki. Their choice of party place was The Little Gym. Here about 10 plus kids congregated for a couple hours of raucous play. There were all kinds of things to run and jump on. They had the opportunity to play with the parachute and run and jump on a long, air-filled, bouncy, mattress about the size two king size beds. To say the least, it plumb wore the kids out. What a neat idea and novel concept. The third party of the day was with the DeSimone's to celebrate both Lynley and Alicia's birthdays. This party was centered around a backyard pool but Sydney spent much of her evening running throughout the inside of the house like a chicken with her head cut off. Graham spent the evening imitating a sack of potatoes as he was passed around from person to person as they wanted to hold him. All in all, it was an excellent and busy day but we think that it may have been the impetus of her sickness. With that much exercise and exposure it was, more than likely, the perfect time to catch a germ as well. Hey, this is the price you pay for normalcy - as long as this is just that. It is time to go as it is another busy day. Today we are interviewing preschools for Sydney and there is a mountain to climb at work. My purpose is showing signs of normalcy.
4:50 AM 7/14/2004
Sydney seems to be unhindered by her "cold." We have given her several medications and she does sound better but we know the cold's symptoms are probably just being masked by the drugs. Yesterday, she was as energetic and playful as ever. Mid morning we set out to visit the Overton Ridge Children's Center. In reminds me very much of the preschool that I went to as a child. We had the opportunity to view the cafeteria, the playground and several of the school's rooms. Sydney even had the opportunity to meet some of her future classmates. It was very exciting and Sydney was thrilled at the thought of going to a "big girl" school. There was and is some debate about which age group that we should put Sydney in. The "young" three year olds are fully potty trained and well ingrained into their social lifestyle. The "old" two year olds are still learning to master the potty and seemed more friendly to her. We really have several goals for Sydney in the upcoming school year but at the height of our list socialization has got to be at the very top. Sydney has spent the last year surrounded by adults and entrenched in a completely different lifestyle than a "normal" child. Although she is advanced in many areas of her development her social skills with children her age are nonexistent. By putting her in a younger class it is our belief that she will have more confidence and, thus, it will be easier for her to pick up the skills. In the same sense, when it comes to her social development she is probably more alike children in the "old" twos instead of the "young" threes. On the flip side of the coin her cognitive and learning skills are probably above that of many children her age. Remember, she has been forced to live in an adult world. So, in short, putting her in an age group below her may not challenge her as much. Then again, I don't remember preschool being about higher math or literature so, perhaps, the degree to which she is challenged isn't that big of an issue yet. I am assuming that the lesson plans are very similar but that realization also prepares me to ask some very important questions. I do want her in a structured learning environment. I want her mind to be busy and I want her to be challenged daily but, for me, at this point, social interaction and learning to live amongst a group of her peers is perhaps the most important initial hurdle to overcome. Regardless of our choices I feel safe and secure in putting our child in this school. They were warm, friendly, and professional. The have even had experience with children in Sydney's position. Just think, in one short month Sydney will be noodleless and institutionalized. Oops, I mean "in school." My purpose is preparing to embark on her brave new world.
5:50 AM 7/15/2004
Some days I am reminded of where we stand. I am reminded of the cold harsh realities of neuroblastoma. There still are no answers and the monster is still lurking out there somewhere. Today is not about us but another little girl who is fighting for her life. It was not long ago that this little girl stood in Sydney's shoes. Yesterday, her mother wrote:
I am typing the email that I never thought I would need to, but always feared. Unfortunately, it's not the hardest one that I will ever have to do. She is fading fast and fighting so hard to win the battle against neuroblastoma. We felt we needed to tell her the truth about the path she is on. She knows that without a miracle, she will die. She doesn't know that it will be in as little as a week, but she knows it's soon. She was fighting so hard and becoming less peaceful as the hours passed. She was very sad, and clearly doesn't want to die, but she seems to be okay with it now. As okay as an 8 year old can be. My biggest fear is that she wouldn't have anything in her heart but fear and anger when we told her. That doesn't seem to be the case. She wants to talk to our pastor and ask her questions about heaven. She will come by tomorrow morning. She asked the hospice nurse if she could get the pain under control, would that mean that she won't die? She really doesn't want to go yet, but her life is truly so hard now.
She wants to feed herself, but can't navigate the spoon to her mouth.
She has shingles on her eye, forehead and skull. That eye is swollen shut. The other eye is bulged, swollen closed to a slit and weepy. Her lips and gums are bleeding.
She can not walk.
Her pain is fairly under control, but we keep increasing the meds and she can't keep her eyes open. She is afraid that she will die in her sleep and is fighting to stay awake. We've told her that sleeping won't make her die. G.d will take her when her place is ready and perfect for her. She won't necessarily be asleep when it happens. Might not be completely true, but it's sad to watch her fight to stay awake.
I promised her that I would tell her if she was dying. I think we made the right decision, but this is unbelievably hard. I want to release balloons before she dies so that they are waiting for her in heaven. I hope she will take comfort in that. Blessings!
Little Michaela earned her wings early this morning. Life is not fair. With tears in my eyes, a heavy heart, and a empty feeling in the pit of my stomach I will go on. Our purpose has once again been illuminated.
5:00 AM 7/16/2004
I really take these things personally and, even today, I really do not care to talk about how things are going in my family. There was something in Michaela's mother's words that struck me deeply. It is funny how we can go through the battle of neuroblastoma and seem to go on with our lives. You never forget that your child has had cancer and you are especially mindful of the fact that it can come back. But, with all of your heart, you believe it never will. I think this is partly a protection mechanism and I am able to continue moving forward every day. It is not that I do not fear it. I do. But I do not believe it. It is a feeling stronger than hope and I do not know what to call it. Regardless of its name, I am able to keep it in the back of my mind. I am able to not be totally consumed by the the thoughts and the "what ifs." I am able to enjoy everyday. I guess the best way to explain it is that I think about neuroblastoma everyday but it does not consume me. If it did, I would not function.
And then there are days like yesterday. It becomes real again. I could not get Michaela out of my mind. I could feel it as though it was Sydney. Many people often say to me, "I could never imagine what you are going through." Well, the problem is, once you have been down this road you can not only imagine but you can feel it as well. You have been so close to the end you can taste it and smell it. I am not saying that I know what it is like to lose a child but I do know what it is like to be near the end. I can tell you what it is like when you have no hope. I can tell you what it is like to not know if your child will be with you on the very next day. It was for these reasons that I understood and identified with her letter. I felt it in my bones.
Ultimately, we are talking about a living, breathing, innocent child - just like Sydney or Graham or Truman or Preston or any other child you know. Look into your child's eyes tonight. I do everyday. Imagine. Michaela had the same feelings, concerns, and inherent right to be happy. It was not that she did something wrong. It was not that she was somehow different. For some reason, she was just chosen for this path. And now, she is without life. Suffering until the end. How do you make that okay? How do you accept it? How do you make sense of it? Go ahead, tell me!
There is no answer.
These angel "wingings" are pissing me off. I will put a stop to it. I don't know how. But, I will. I have a purpose.
THE BEGINNING OF THE END (A GOOD ONE)
4:40 AM 7/19/2004
I hesitated naming this entry "The Beginning of the End." That is just a scary title. But, I figure, if I write it for a good reason I will never have to write it for its evil counterpart. Regardless, today is the first day of the last round of oral chemotherapy for Sydney. In just 14 short days she will be completely off therapy. It is a strange and foreign concept but I am sure we will adjust. This morning we will draw her labs, venture to the clinic, and have Sydney checked over during her last pre-therapy checkup.
After much consideration and deep thought I have decided that my beautiful, sweet daughter is actually an obstinate twerp. I know, I know, I should be more forgiving. After all, she has been through quite a lot. But, nonetheless, I am going to stick with my previous conclusion. I don't know what switch was thrown but, at some point near the end of last week, she made the complete and utterly annoying transformation. Again, bad daddy, how can you say that. Well, I will tell you how. Sydney has forgotten how to walk. She is either at a complete stop, dangling in mid air from the chandelier, or she is running at full throttle. There is no midground. There are no moments of rest and relaxation. She is a fury. I have written many times before that Sydney is "full blast," but in comparison to those times she was not event at a partial blast. She is unrelenting, unmanageable, and entirely unbelievable. Lynley and I used to get tired by the end of the day. After working a full day, managing the house, and spending time with the kiddos you are ready to hit a nice soft pillow. Over the past few days that time has come at about 10:00 AM. I really can't believe it. I do not know where Sydney's energy is coming from but she is totally tireless. Is this what three year olds are like? (Don't answer that!! I don't want to know. I am just going to assume that, like her kittydome, it is a direct result of therapy and not my obviously superior parenting skills.) I would love to list everything that she does in a day but the entry would be far longer than this diary in whole. Just accept it. She is a menace.
Don't get me wrong. I still love her with all of my heart and when reflecting back on the day before it is always easy to do it with a smile. But during that day, it is a entirely different story. I have never strung so many "nos" together in my life. Here is a short rendition of what will happen in any fifteen minute period of Sydney's day.
"Sydney, don't stand on the top of the couch. No, don't jump on it either. I am serious. Get off the couch. I said NO!!" Here is the part where I take the bottle out of Graham's mouth and get up to set him down so that I can go physically remove her from the top of the couch. There is the sound of expletives whispered under my breath, then the rustling of pillows, followed by a mad scampering of three year old footsteps as she tears off in the opposite direction.. By the time I have set Graham down she is gone. I hear a mad crash. She is in the kitchen. I run into the kitchen but she is gone. She has left a trail of plastic cups strewn across the kitchen floor. "Sydney." I wait. "Sydneeeeeey." I wait, again. "Sydney please come back in here and clean up your mess." There is no answer. I am off down the hallway to find her. As I get closer to her I hear the pitter patter of three year old footsteps running into the bathroom. "Wham!!!", the bathroom door slams. "Waaaah!!!" Graham starts crying. Through the door I tell Sydney not to slam the door. There are more expletives whispered under my breath. I am off to check on Graham. As soon as I pick him up Sydney starts to cry. She has locked herself in the bathroom. I now have a crying baby boy in my arms and a crying obnoxious twerp in the bathroom. It will be another five minutes before I get them both to stop crying, another five more as I try to squish her yellow blanket under the bathroom door and then five additional minutes before we convince Sydney to calm down enough to explain to her how to unlock the bathroom door. In this scenario it is now 8:30 AM and I am just starting to realize that there are 12 more hours left in the day. That was the last moment of relative calm I would have. Parenting is hard stuff.
I am off. It is time to nap (not really). I have a busy day full of obnoxious, high-stress purpose ahead. Life is good.
5:40 AM 7/20/2004
Well, yesterday went off pretty much as planned. We arrived at the clinic at just after 8:00AM. Sydney was mobile but, luckily, unarmed. We would spend the next hour chasing her around the playroom. Once we entered one of the post-waiting waiting rooms we would have her confined and she was forced to run circles in the exam room. After a blood draw and a little more waiting we were blessed by the presence of Dr. Eames. This was quite a treat for us. For some reason we have spent most of our time with opposite schedules. When we were in the hospital she was in the clinic and when we were in the clinic she was in the hospital. It was great to spend some time with her. The good news is that Sydney is fit as a fiddle and apparently "normal." I debated that and explained her high energy level. Dr. Eames did not have much sympathy and did not buy into my theory that her unmanageable exuberance was therapy induced. It is apparently "normal kid" behavior. Well, what does she know, anyway. She only has three kids and she only treats several hundred pediatric cancer patients per year. I prefer to live in my own world. Nonetheless we had a great time. We are still waiting on her urine results to start her final round of Accutane but I imagine the final "okydoky" will come some time later this morning. Due to her weight gain she will now be receiving 80mg per day as opposed to 60mg so this ought to be an interesting two weeks.
On another note, we will be leaving for Chicago on Thursday morning. We are attending and participating in the Children's Neuroblastoma Cancer Foundation's Annual Conference. There are almost ninety kids that will be attending and several hundred adults. We also have about ten speakers on neuroblastoma so it should be an interesting event. It will be so nice to finally put a face and a hug around so many of these people that I have come to know over the past year. In some ways it will be much like a family reunion. Speaking of which, I need to get to work. I am working on a presentation for "Lunch for Life" and there is still much to be done. The next few days will be jam packed with purpose.
6:20 AM 7/21/2004
Our trip to Chicago is right around the corner. I still do not think Sydney quite understands the concept. She does realize that we are going on an airplane. It is hard to explain these concepts to her as she moves really fast. Yesterday, during one of the hundred or so times that she whizzed by me she made some comment about getting on the plane to see the Easter bunny. I tried to correct her but she was already gone. A few seconds later she came back in my direction and I tried to explain the concept but I was only able to utter a few short words before she was gone again. With her current agility and speed I have calculated that it takes approximately 12 trips by me to complete an actual sentence. The funny thing is that as busy as she is 12 trips takes less than a minute.
Well it has been quite a long time since I last stood on my soapbox and I think now is as good time as any. I am frustrated once again with the way things are and although tempered with the more insight (given to me by Sydney) I find the need to express my opinion about the bigger picture and what really matters.
Over the past two days we have been trying in earnest to get Sydney's prescription of Accutane filled at the Eckerd's down the street. Although we have continuous problems with the pharmacy miss filling prescriptions and just down right rudeness we keep going back for our almost weekly beating because it is far closer than many other pharmacies. I guess we are eternal optimists because we always believe that they have realized there mistakes and will go out of there way to be friendly and help us out. Wrong!!! (but not really the point) Monday, Lynley went into the Eckerd's to get Sydney's prescription filled. They called later to say that it needed to be precertified by the doctor and the insurance company. This would entail a faxing process and it would be several days before we got our prescription. We tried to manage the process. We would call each of the parties to make sure each was receiving and sending the fax. Unfortunately, our pharmacy never sent the fax out even though we asked several times, very politely. This would not have been such an issue if we were not going out of town and we would certainly have been far more understanding had this been a new prescription but Sydney has been taking this drug for over five months now. Finally, after no luck with the faxing process, Lynley went down to the pharmacy yesterday afternoon to (a) find out what the reason was for the need of the precertification, (b) see if they could sell us enough pills to get through our trip (without insurance) and (c) to make sure they had the right number for the fax machine at the clinic (both our physician and the assistant had been standing in wait for their faxes which never came.) Anyway, when Lynley got to the pharmacy the pharmacist was on the phone so she waited - and waited - and waited. Finally the pharmacist pulled the phone down and said something to the effect of "I am busy, what do you want?" Lynley replied "I am back to check on the status of Sydney Dungan's prescription." The pharmacist apparently rolled her eyes and told her to go away, there was nothing that could be done and she would just have to wait 3 or 4 days. The pharmacist went back to talking on the phone. Lynley tried to ask the other questions but the pharmacist actually ignored her. Lynley waited to for another pharmacist to return and then politely asked for his help. He was helpful in making sure the fax was sent. He let us know that the 12 pills that we would need would cost $127 dollars and suggested that the insurance company would not cover the cost even if we filed. He also pointed out that insurance required the precertification and gave no explanation as to why? The other pharmacist continued to roll her eyes in disgust and in the meantime was rude (and I mean completely rude) to two other patrons. Lynley thanked the pharmacist and went to find the manager. The manager had been preprogrammed to say she was sorry and that customer service was her main priority. She also stated that the pharmacist in question was having a bad day, had already had a public screaming match earlier in the day and sometimes that just happens. Dissatisfied, Lynley left. By the time Lynley got home she had entered high blood pressure fuming zone. Nothing made sense and on top of that she had been treated poorly. Nobody does that to my wife other than Sydney and Graham. This was my calling. I thrive on situations like this and this is what I love. I decided to call the insurance company. Almost immediately I discovered the problem. Sydney had been precertified for a generic equivalent for Accutane called Aberdeen. Eckerd's no longer carried this generic equivalent and was now carrying Sotret (another generic equivalent). The insurance company was still going to require a precertification. I asked the representative if she understood that this drug was a generic equivalent. She said yes. I asked her if they normally required precertifications when people switched from one generic equivalent to another. She said no. She didn't get it. I asked her if she understood my problem and all of a sudden she got it. It was like a light went off in her head. She said "Oh, I am sorry Mr. Dungan. What a silly problem to have. I have corrected it in our system and you should have no problem." I thanked her and hung up. That phone call took a little over two minutes. I was now off to Eckerd's. This was going to be fun and I had the added benefit of protecting my wife's honor. When I got there I stepped right up to the plate and waited patiently for the pharmacist to call on me. I got stuck with the nice pharmacist. I think they saw me coming. I kindly explained the issue and within seconds our prescription was filled. I did not get an apology. I got a "Hmmm. I should have caught that?" The nasty pharmacist kept trying to make eye contact with me and offer a smug glance. I thought that was pretty stupid as it was just as much her fault as it was the insurance company's. Regardless, I politely paid for the prescription and made a beeline for the store manager. She was under-whelmed to see me. I explained the issue and what the solution was. I explained that this was not our fault. I explained that although this was not an error it was a problem created by how Eckerd's filled out the original precertification . I explained that the problem was created because her pharmacists did not make the connection between the generic drugs. I explained that it was also the problem of the insurance company not making the association automatically. I explained that, regardless, if someone just took a minute to think about it, the problem was obvious - especially to a pharmacist and if they had taken the time this whole situation would have been avoided. I got the same preprogrammed answer that Lynley did. "I am sorry for your inconvenience but my major priority is customer service." She then explained to me about bad days as if I had never experienced one and that insurance companies are difficult to deal with. She did not get it. I chose to enlighten her in my kindest of voices. I said.
"Miss (whatever her name was), I don't think you understand. The problem that occurred was not our fault, yet we have been treated as though it was. You explain to me that it happens. You explain to me that people have bad days but let me offer this point of view. Your store is a pharmacy. People come to you when they are sick, they are dying or when they know someone who is sick or dying. People come to you to get drugs because the have a heart condition, because the have a disease, or in some cases because they have cancer. I can ensure you that in many cases you or your staff's bad day is far better than many of your patron's best of days. Yet no one seems to realize this and, worse yet, they don't have the common decency to take the required step of doing their very minimum much less taking an additional step because they realize that someone could be having a much worse day, week, or year. It is not your patrons' fault that they are sick. They are not a lower common denominator because they dawn you halls. They are people, just like you and me, that just need some help. It isn't about customer service. It is about human decency. I am not asking for a change in policy. I am not asking you to work any harder. I am just asking for a change in perspective."
In her preprogrammed voice she thanked me and told me she would take it into consideration. She didn't get it. What is there to consider? This makes me re-realize one of the first fundamental tenants that I learned in this journey. Someone is always worse off. Be thankful for what you have. You never know when you will be with out it. It is people like this that frustrate me. They just don't get it. Hey, I can't necessarily blame them. Until Sydney was diagnosed I thought I really understood life. My biggest worry was whether the laundry got done or not and boy did it hack me off when my shirts weren't clean. I wish I could make these people understand. I wish I could do something to show them the light. I know nothing will change. I know the next time I walk in the store (which I won't) it will be the same thing. I just wish everyone had the opportunity to walk in these footsteps for just a short period of time. For all of the bad, there is good. I will be happier in my life for the experience. I have a purpose and I have perspective. Okay, off my pedestal.
CHICAGO - A TRIP TO THE SOUL
5:00 AM 7/27/2004
I have absolutely no idea of where to begin. It would not be enough to say that our trip to Chicago affected me profoundly. It would not be enough for me to say that it was life altering, eye widening, or soul touching. This memory now rests somewhere in my soul beside the loss of my father, my marriage to Lynley, the birth of Graham, the birth of Sydney, and the day this journey started for our family.
The conference, itself, was first class. It was held in a beautiful hotel right on the river in Chicago. I was completely amazed by the level of organization, professionalism, and down right decadence. We had excellent meals. Our children were cared for completely and the families' thirst for information was filled. It was not this, however, that blew me away. The dedicated doctors and researchers of neuroblastoma in attendance were clearly there for our families and whether it was a presentation that answered the question of a parent or whether it was a comment made in the question/answer period following each presentation or whether it was a quiet chat with one of these caring physicians over a glass of wine later in the evening I think everyone left with a warm sense of direction, fulfillment, and caring. It was not this, however, that blew me away. Sydney had a tremendous time. The kid's needs were met completely. This included meals entertainment, activities, movies, and a slew of toys. There were several "kid's rooms" and what seemed like millions of volunteers to help make sure things went smoothly. But this, again, was not what blew me away.
It all came down to a few life defining moments that will forever change my life.
On Friday night we had a dinner. Now, once again, this was no ordinary dinner. It too was first class. The meal was served buffet style and even the kiddos had there own miniature buffet table which was set at their height. It was filled with every food that I think could appeal to a kid and, yes, especially that of a kid whose taste buds have been tainted by chemotherapy. I guess I saw about 60 kids that night. It was later that night after the dinner and as the DJ turned up the music that I would really be affected. The kids naturally migrated to the dance floor as the DJ enticed them with the artful sounds of the "Chicken Dance", the "Macarena", and the "Hokey Pokey." Here we stood as many of these children gathered in a circle in the middle of the dance floor. They were having a blast. They were laughing and dancing and having the time of their lives. Most had been through treatment. Most had been on the edge of their lives at one moment or another. All had been through the rigors of this monster and yet they danced and played as if nothing had ever happened to them. They were happy. They were normal. They were just kids having a good time. I stood on the edge of the dance floor in the background in watchful super dad position. At first I was looking for signs of distress. I was looking for a child in trouble, but, there would be none of that tonight. It was not long before I could feel the tears well up inside me. It was an emotional touching moment for me. Here was Sydney amongst many others just like her. I had flashbacks to just about every moment of her therapy. I remembered the endless rounds of induction chemo. I remembered all of the times that I was not sure that she would make it through the next day. I remembered her surgery along with her morphine rage. I remembered wondering if after being sliced from one end to the other if she would ever forgive me. I remembered transplant. I remembered the mucositus and the skin ripping off of her tongue and sticking to the toothette. I remembered waiting moment by moment to see if her stem cells would engraft. I remembered worrying if I would ever get to take her home again. I remembered the daily trips to radiation and worrying if, because of that, she would ever be able to have children. I remembered the antibodies with the pain, IL-2 with the fevers and the fears that serious conditions could occur at any moment.. With its fast pace, I wondered if we would keep her whole throughout the trial. Every time we got out of the hospital we were starting another round of Accutane which left her depleted and mad. I wondered if I would ever get to see her get a chance to take a break and just be a kid. When looking around the room I realized very quickly that I was not isolated. This sentiment was shared and there were other parents thinking the very same thing. Here we were. We never knew that we would get to this point. We never knew our children could be as happy and carefree again. It was tremendously heartwarming. Once again, I was inspired by the resilience of our children and so happy for this moment. This feeling was not only for the children but for the parents, much like myself, who stood in the shadows of the background enveloped in this shared sense of peace and reflection. At this moment we were faced with our survivors. Every child on the dance floor was a hero and every child had touched the lives of not only their families but of their friends, their distant relatives and, in many cases, the world. They were congregated in one room on one floor with one purpose. They were having fun. They were normal. They were complete. I will never find the words to express how profoundly that evening impacted me. It was a night of memories that will stay with me forever. I realized how incredible our children were and it further affirmed that we were not alone. My purpose has grown. It was not that I did not realize we were fighting for thousands of children's lives. I follow many of them on a daily basis. But, it is quite a different thing to see, to hear, and to touch them. I could look around the room and see what an incredible miracle this was. This was the first event of several last weekend that have changed me forever. This story was that of our survivors and the hope for the future. Tomorrow I will share another perspective as I gained strength and clarity through so many of our angels. For now, it is time to face another important day of ever-expanding purpose.
IN A FATHER'S EYES
6:00 AM 7/28/2004
This is an entry that I know I will not do justice. One of the great things about Chicago was that we were able to connect with other people. There was a certain automatic kinship. I met many people that I follow or talk to on the list. The instance I spoke to them I felt warm. It made me immediately comfortable and safe. I think what I felt was the isolation melting away. At home I am the expert. It is really easy to be an expert when there is no competition and there are so few people around that truly have an understanding of the disease. I would even go as far as to say that I know more about neuroblastoma than many of our doctors. Now, don't get me wrong, they know much more about cancer, pediatrics, chemotherapeutics, and treatment than I will ever know. But, when it comes to neuroblastoma, when it comes to knowing our children, when it comes to facing this disease I am simply exposed to far more information than they ever will be. Right after Lynley, Sydney, and Graham - neuroblastoma is my life's work. It has to be. Regardless, in Chicago I was no longer the expert. I was simply another "expert" in the room. It felt so good to be surrounded by other people who knew and who understood. It was even better to share in that communal glass of hope and, for me, be touched by the hands of our angels.
I received, perhaps, the strongest gift since the first days of diagnosis. I found this through the eyes and the hearts of two dads of angels. Let me see if I can put this into perspective. When Sydney was first diagnosed my mind went to the edge. I could feel, hear, smell, and taste what it would be like if I lost my dear Sydney to this monster. It was the most awful, gut-wrenching ,soul-wretching feeling I have ever experienced in my life. For comparison sake, let me say this. I dearly loved and admired my father. He passed away when I was 15 years old. It was a hard road. It changed me tremendously and, as you would expect, hurt me very deeply. However, that emotion was not even a skinned knee in comparison to the true feeling of even really thinking about the loss of your child. That is not to diminish my dad. I still love him very dearly and have looked to his guidance frequently throughout this journey but I am trying to paint a picture of this extraordinary feeling of loss.
Since the time of Sydney's diagnosis I have not been able to go back to this place. You might say GOOD! But, I have an entirely different perspective. At first, you may assume that it is morbid fascination but it is not. For me, it is a powerful emotion to draw upon and, in fact, it refuels my strength, my perspective, and my purpose. Now, I may be alone here, but it is difficult for me to get to that place. I cannot think what it is like to be without Sydney. My mind will not go there. I don't know whether it is a subconscious protection mechanism or whether it is just something a parent is not allowed to do. I can sit here and say "Okay Mark, think about what it would be like if Sydney was not here." I can think of being without her but it is totally unemotional. I cannot, no matter how hard I try, feel it. My mind won't let me. I can even come up with some sad scenarios (like speaking at her funeral) and even that, although sad, really does not affect me. My mind will not allow me to believe that it could be my reality. I don't feel.
So, why Mark? Why do you have this morbid fascination? Why do you want to feel those moments of terror, of isolation, of pain? Truth be known, I don't want to forget. I don't want to forget one moment of how important this journey has been in my life. I don't want to turn back into the person I was. As Sydney finishes treatment, I don't want to go back to playing golf. I don't want to go back to working 24/7. I don't want to let life go by. I want to feel it. As awful as this thing is I don't want to forget one miniscule second of what I have learned and I am afraid. I am afraid of forgetting what is important in life. I am afraid of not remembering my priorities. That is the reason I reaffirm my purpose everyday. I want to remember every moment and feel how great of a gift I have been given. I don't want my perspective to change. I want to feel. I want to love.
So all of this came down to two fathers. Both were fathers of angels. One lost his son several years ago and the other not nearly as long. I could see it in their eyes. Eyes are powerful. There is a certain expression in the eyes of a parent who is or has been to that place. They are warm an open, however, the shock and the pain is ever present. These parents shared with me. They allowed me to walk into their worlds. I was able to hear the stories - both good and bad. I was able to hear, in detail, about the last few days and moments of their children's lives. They also shared the good times and the scary events that make up the life of a family battling neuroblastoma. They shared with me in a way that I could relate and I could feel. My eyes welled up several times and their were moments that I was able to sneak off to be alone with my tears. I was feeling. I was feeling for the first time in a very long time.
At the beginning of this journey I spoke of two Marks. There was the strong one and the other was fairly emotional and irrational. I lost one of those Marks in the process. But thanks to these parents he is back. He is an emotional sort but he keeps me connected and keeps my priorities in line.
There is no way that I can express how incredible this trip was for me. I could not share any of their words and make them as powerful as they were in real life. My soul was touched and my mind was healed and I like to think that it was a gift from Nick and Lance. I know that I will never be able to bring meaning to their parent's lives but they have changed mine forever. Thank you for healing my soul. Thank you for letting me in your life. My purpose is impenetrable and I am once again whole.....
A TRIP TO "TACO"?
5:30 AM 7/29/2004
Sydney had quite a trip as well. Apparently, this trip has had just as much of an effect on her as it had on me. For some reason, she will not stop talking about it and, of course, it is really funny to hear her rendition. You see, she has a little bit of a different perspective on it than I and, furthermore, it sounds quite different. For starters, I say "Chicago" and she says "Taco (or something to that effect)." You know, I say tomäto she says tomto.
Several times per day, since we returned home, Sydney has decided to relive her memory of our trip. It starts with an announcement. "Daddy, want to go to Taco with me?" Of course, the answer is always yes. The first thing we do is pack. She gets her stuffed kitty (a kitty that we got at the "Build a Bear" store in Chicago.) and places it in a small animal carrier. She usually also gets a cup of juice for the road, several blankets, and a book to read on the trip. She then tells me to load up the "car". The "car" is a large cardboard box that sits in the middle of her playroom. Once loaded we get into the "car" (well, she does, I don't exactly fit). Then we drive to the "airport". On the way to the airport her imagination runs wild. She asks me if I forgot anything at home. She asks if we need to stop to get any gas and she talks at length about how excited she is to get out of town. Once we arrive at the airport she climbs out of her box and we have to get all of her luggage. We carry the luggage out of the playroom and make a circle around the living room before returning to our cardboard box which is now, miraculously, an airplane. We then check our baggage and load it onto the "plane." We load up, once again, and we are off. She spends most of the flight talking about chewing gum so that she does not get "ear owies" and explains that you should just chew it, not swallow it. Here is an important part, the plane flight is not over until I shake the box. After all, planes have a little bump when they land. She will stay in the box until I shake it - no matter what I say. (It just occurred to me that I now have a weapon to keep my child still and sitting in a box. That is important to know with a three year old.) If I don't shake the box she will eventually stomp out of the box, give me a mean look as if I were stupid, shake the box, and then stomp back into the "plane." She then announces "We are in Taco daddy." This scenario continues to play out with a limo ride (unfortunately I do not have a "stretch" box) to the hotel, unloading the luggage, a trip to Navy Pier, then back in a cab to the airport, loading the luggage on the plane, flying home, and unloading the luggage, loading the luggage in the car, a drive home, unpacking the car, and then, and only then, she declares an end to the trip. It is usually something like "Oh daddy, I had a fun in Taco. It is good to be home to see my kitties. -- Hey, dad, want to go to Taco again!" -- Like sands through the hourglass these are the days of our lives. How good is this?
Sydney is currently on day ten of her last round of Accutane. The increased dosage has taken its toll on her skin. Her lips are chapped and her face is extremely dry and peeling. We continue to lather her up with lotion and vitamin E but the toll is far worse this time around. Emotionally she is doing pretty well. We can see instances of "Cybil" but, for the most part, she seems to be content. She has sporadically complained of "belly owies" but as of now we are not yet concerned. It will be interesting to see if her leg pain returns. Next Tuesday will be our last day of therapy.
My purpose is clear and once again my mind is stirring. I am ready to put a stop to this.
5:51 AM 7/30/2004
We are finally starting to recover from our trip to "Taco." It has been a busy week and yesterday and today are even busier that usual. Sydney and Graham's nanny is on vacation and that has left Lynley and I shuffling to fill the void. Right now Lynley and I are splitting the day at about 10 or 11 AM. She is getting the kids in the morning and I in the afternoon. I am happy to say that there is little drama in Sydney's life right now. She continues to weather this treatment leg better than we anticipated although her lips, face, and hinny might disagree. The are all red, chapped, and peeling.
One of the things that I did not talk about related to our trip was all of the doctors and researchers that came to the meeting. We have been lucky. Sydney's medical team has been excellent. They have been here beside us and have been extremely helpful and caring throughout our ordeal. Unfortunately, this is not the case with many of the oncologists that we hear about on the NBLAST list. I continue to hear reports of arrogance and misinformation on the part of many of our children's treating physicians. For these families (and there are many) this trip was like no other. Not only did they get to hear from the leading researchers and physicians in the world of neuroblastoma but they also got the opportunity to sit in a quiet corner t discuss their children's cases with these doctors. I can not tell you how many times I would look around and see a worried family talking to one of the doctors that attended the conference. That is very special. In our world, when your child's life is at stake and the information out there is missing, incomplete or contradictory, there is nothing better than the feeling of talking to the world's best. We were blessed to have such an incredibly caring group of physicians. I know they don't, for the most part, follow my words here in my diary but I think it is important to let them know how incredibly important they are to us. For many they are the only physician that has taken the time to not only care for their child but care for the parents as well. Thank you, thank you, and thank you.
Unfortunately there is 6 hours of work to cram in the next 4 hours so I had better be off. I am thankful that I have a weekend full of purpose to look forward to. I need a vacation.
WHEN LIFE GIVES YOU LEMONS
5:40 AM 8/2/2004
Alex Scott passed away yesterday afternoon. She was the 8 year old founder of Alex's Lemonade Stand For Pediatric Cancer Research. Many knew her from appearances on the Today Show and Oprah. Over the last year she has raised nearly $700,00.00 for pediatric cancer research with her lemonade stands. She was an inspiration for thousands upon thousands and for many families with neuroblastoma she was the torch bearing hope that this disease could be defeated. For me, she was pure and kind. She was the essence of what a child is and should be. She cared and she loved and she had such an incredibly happy perspective on life. I will miss her terribly and I feel so much for her parents. Alex often said "when life gives you lemons, make lemonade." I am struggling to make sense of how I can make lemonade from this. Tell me how this makes sense. I don't feel much like talking this morning. My purpose is as clear as ever but, today, "Superdad" has a chink in his armor.
COULD THIS BE IT?
6:00 AM 8/3/2004
Tonight, at approximately 6:00 PM, Sydney will receive her very last Accutane pill. Could this be the end of treatment forever? Will we never have to subject her little body to chemotherapy, radiation, immunotherapy, blood transfusions, surgeries, and the multitude of other foreign treatments ever again? What a thought. It is bittersweet. On one hand, I am so completely grateful of the fact that she gets to turn back into a normal kid but on the other hand, the fear is still there. I can still taste it everyday and it is the last thought that I go to bed with at night and the first that I wake up with in the morning. I actually have a mental checklist. It is partially healthy and partially mentally unstable. Every night, when I go to bed, I wonder. Did I do everything I could do today? Was I a good daddyy? If she was gone tomorrow would I be proud of my actions? Would I feel like I had done enough? Most of this is healthy. It is a good check to have at the end of the day. I get to reevaluate. I get to learn from my mistakes and I get to make the next day even better. The unhealthy part is that it is motivated, almost entirely, from fear. Fear is the one animal that I just can't seem to get a grip on. The odds are just not in our favor. They are not where they need to be. So, I think about it. I don't so much worry about it as I fear it. It is not in my control. So, I try and live everyday like it is our last. I don't worry about what could come, but , God, do I fear it. As I mentioned before, this will be one difficult battle to overcome.
We now have a break. It just two short weeks we will be in for our last set of scans for this protocol. We will have the talk with Dr. Eames regarding our future and where do we go from here. It will be our final evaluation, so to speak On the 25th of August her noodles will be removed. Yes, I new day is dawning. My purpose is getting a new lease on life.
WELL HMMMM. WHAT TO SAY.
5:00 AM 8/4/2005
The last pill is down. I was expecting fireworks. I was expecting a tremendous sense of joy and relief. Did not happen. It was more like a birthday. You never really feel any different on your birthday. I never really feel smarter or wiser on my birthday. It is just another day. It is another hurdle and another milestone passed. You might think that I would be happy that Sydney does not have to endure anymore but I think the fear keeps me from getting too excited. I don't want her to have to endure one more round of chemo or one more surgery or one more dose of radiation or one more transfusion or one more infusion of antibodies but I do not want it to come back even more. We still sit at a tremendously scary point in Sydney's life. It may seem that we can wash our hands and relax but there is a very good reason that they don't call these children cured - too many relapse. I may seem overly dramatic but I'm not. To me it is like killing weeds in my yard. I am by know means a green thumb or a horticulturist but I am pretty proud of the grass in my front and back yard. I take great care to fertilize and I am diligent about regularly putting out slow release weed killer. Now, you should know the only difference between my backyard and my front yard is that I have a pool in my backyard. Other than that, they are pretty much identical. They have the same soil. They have the same grass. They are both well covered by the sprinkler system. They both receive the same level of nurturing care. The difference is that twice a year weeds sprout up in certain places in my back yard. My front yard remains weed free. Why?? I don't know. I have tested the soil. The weed control that I use is supposed to take care of the types of weeds that spring up in my back yard. I treat them the same way. I do the same things. The weedy areas in my backyard do not receive more or less traffic than areas in the front yard. They are not in areas that would be prone to collect seeds from the wind. For some reason, however, in my back yard, the weeds keep coming back. With weeds it is just an irritation but with my daughter it is life or death and it is scary. Although Sydney will not receive any more treatment she still sits on the 50 yard line. In all due reality (and boy do I hate to say this) she still has about a 50% chance of surviving. Yes, after everything she has been through, her life is still in the balance. This is the reason that I am such a research hound. There has got to be something more. If your child made it all the way through this and still only had a 50% chance of survival would you be ecstatic? Would you sleep comfortably at night? I don't think so. Yes, I am forever thankful that we have made it this far but I am still biting my nails not only for Sydney but for the thousands of others out there that sit in her shoes. It just doesn't seem right. There must be more and for that my purpose is stronger than ever.
NATURAL BORN CAT TORTURER
Although Sydney has finished the Accutane it has apparently not finished with her. Physically she is doing superb. Her skin is returning back to normal. Her thighs are now pudgy. I have no idea how much she weighs but she has lost the sunken look in her eyes and her body has a healthful appearance that I have not seen on her in well over a year. Her hair is now a little over and inch long and she even had her first real haircut (real because it was necessary) the night before last. She now has a roseyness to her cheeks which for the first time appears to be a result of health rather than medication. Yes, she is on the mend - physically. Mentally, however, she is a challenge. We are truly paying the price for spoiling her and on top of that she is three with all that would entail. One moment she is loving, sweet and caring. She is the most adorable inspiration to me and sends the heartfelt message that all is right in the world. However, the moment is short-lived and the rest of the time she is a vengeful, snotty-nosed, argumentative, demanding, cat-torturing, little twerp. She is so much so that it is laughable but also a little scary. This I think is the time in a parents life when you have to wonder. What did I get myself into? My daughter, the one I love and seek inspiration from is clearly trying to wipe this world of cats. I know, it seems strange. She still spends half of her time in the chemotherapy driven side effect of kittydom. She meows like a cat. She stretches like a cat. She sleeps like a cat. She licks her paws like a cat. At times, she even eats like a cat. I would go as far as to say that she mimics cat behavior better than any human on the face of this world. Yet, she was decided to try to remove them from the world in which she lives. I think it could be cat envy. We have 4 cats (Yep, count 'em 4. Not my fault by the way!) Sydney spends much of her time chasing them around the house. She mimics their behavior and, let me tell you, they are thoroughly annoyed.. I think I just figured out where they coined the term "copy cat". Anyway, the poor cats just look at me as to say " Human dad guy, Make this thing leave me alone. Please, for the love of God, make her go away?". In my cats' defense I usually oblige. I am the distraction mechanism and my cats have come to really appreciate me. The problem is that I think Sydney is aware of our conspiracy to provide the cats with freedom from her. She has started to corner them in rooms well out of earshot. She will chase a kitty into a room and then close the door behind her. It is always a race for me to get their because without fail I will find her with a devilish look in her eyes and a cat fearing for his or her life. She has gotten fairly abusive with them and will poke, grab, kick, try to cut them in half while closing the door and the like. It has left me at a quandary of what to do. I know she is motivated by curiosity but I fear for my cats lives. We have tried logic. We have tried punishment. It feels like we have tried everything but when she gets that look in her eye there is know stopping her. I haven't figured out what to do. I do not know the answer. I haven't even figured out what part of therapy to blame this upon. The good news is that I think it is fairly normal. I won't admit it publicly but I think it is perhaps what a normal non-cancer experiencing child may go through. I think I may be dealing with a real parenting issue. What a unique and truly wonderful experience. I might be challenged and I might be tested but, my purpose is clear as day.
5:15 AM 8/6/2004
Well the good news appears to be that I still have 4 cats that are all alive and breathing. That has become a new check that I must do every night before I go to bed. Sydney continues to do well although yesterday afternoon she started to complain about leg pain. The pain appears to be emanating from the lower part of her hamstring near her knee "pit" on the back side of her left leg. Although we always cringe when we here the terms "leg owies" we think this will probably be attributable to something less sinister. The pain that she had when she was first diagnosed was from the bone and hip joint. Although this could be a sign of NB it is not the first thing that comes to mind - this time. It seems somewhat similar to our experience 2 months ago and it could be related to the Accutane or the fact that she just injured it somehow. Regardless, I am extremely pleased that scans are coming up in just two short weeks. Unfortunately, this is another extremely busy morning. I am back in full blast "Lunch for Life" mode and there is a tremendous amount to get ready over the next couple of weeks. We have added a new twist and I am expecting great things. I will let everyone no more as the launch date approaches. This year will be amazing and there is no doubt in my mind that we will send neuroblastoma research into fast forward. It is going to be an incredibly exciting time. It is time. I have a purpose.
4:50 AM 8/9/2004
OF THE WINGS OF ANGELS
I know it does not have to be this way. We lost another of our brave soldiers recently. I post these excerpts here so that I never forget. I post them so that I can continue to feel and to remember. This family has been very supportive to me since Sydney's diagnosis. In fact, his mom was always one of the first to answer my questions. She has brought me answers and tremendous comfort. I only wish I could return her favor. This is an excerpt from an email I received from her this weekend.
He died quietly this morning at 5:04 am. He started asking to sit up in bed a couple of days ago. He insisted on sitting (well propped, as he had no strength at all) last night when we went to bed. At some point before his final breath, he woke us somehow, and we spent the last minutes (how many?) holding his hands and cuddling our heads close to his. Although he could barely talk, he clearly told us, many times, "Sit me up right now!"
We watched as his breathing took on a pattern of a shallow "pant, pant, pant" followed by a sighing outbreath. I turned to clamp off the line on his fluid bag, which had just run out, and I heard him breathe out. And then breathe in no more. I was still holding his hand, and his father was looking at him tenderly.
Oh, brave, sweet boy. Our nurses tell us they can't believe how long he held on and how he fought until the end. I think he was trying to go as gently as he could on us, disappearing slowly instead of suddenly. For 8 days now I haven't been able to have a real conversation with him or see the spark of sight in his eyes. And now we must learn to live without all of him.
I believe the Angel Gang was trying their best to lure him up. Both yesterday and the day before, we had truly bizzare downpours around 6:00 pm. The sun was low, the rain cast a rainbow over the mountains to the east. But my sweet boy wasn't quite ready to jump aboard. Do you want to know how I know it was the other kids? Because, I swear, it was sunny to the east and to the west of our block. And the rain turned into hail both times, so it must have been coming from pretty high up. I can just see Luke Sweet and all the rest of them up their emptying buckets over our house!
I hope Simon and the rest of the kids are having the best game of tag there ever could be. Simon loved to play tag, and we promised him his heaven would be a place where he could always play tag, where the other people would always say "OK" if he still wanted to play, and where he would never have to be "It" for very long because he liked to scamper skillfully around the play structure to evade capture.
So very sad to lose him and so deeply grateful to have been his mom.
Some days my purpose is clearer than ever even when my mind cannot comprehend. Why God?
5:00 AM 8/10/2004
Early last week Sydney was complaining about hearing problems in her left ear. That seems like an awful sophisticated way for her to say it. She said "Momma can't hear her" and banged on her left ear several times. Lynley and I gave each other that all to knowing look. At that point we knew there was little we could do but hope for the best. The platinum drugs that she received during therapy can continue to deteriorate her hearing for several years to come. We decided that we would hope that there was some wax covering the ear drum and we scheduled a doctor's appointment with Sydney's ear, nose, and throat doctor, Dr Lowery. (Yes, for those of you with a good memory, he is the one from the smart side of the family) Sydney has not seem him, well consciously at least, in a couple of years and we explained that he was the guy that took the monkeys out of her ears. Yep, I said monkeys. From early on in therapy Dr. Howery (Yes, the one from the slow side of the family if you ask Dr. Lowery) always told Sydney at every checkup that he had to look in her ears for monkeys. This made Sydney far more comfortable but has had the byproduct of making Sydney believe she truly has little monkeys in her ears. So, every night before we go to bed, Lynley and Sydney sit on our bed and clean the monkeys out of Sydney's ears. Regardless, Sydney was excited to go to the ear doctor and was happy that he was going to take the monkeys out of her ears. Lynley and I were just hoping that it was indeed a monkey that was affecting her hearing. As it turns out, her right ear was perfect but her left ear was once again completely occluded with wax. We decided to go in and see if we could get it out with out anesthetizing her. Luckily, with scans coming next week we would have a perfect opportunity if need be. Sydney sat on the table and was a very good girl as he pulled a jelly bean sized ball of hard, crusty, dark, colored wax out of her ear. She winced and cried a little but recovered rather quickly. We were, once again, completely surprised by the size of this "monkey." It has only been 2 and a half months since we last had this procedure performed on her ears and it had already gotten to the point that it affected her hearing. We clean her ears every night and yet here it was, back again. We asked if there was anything that we could do in the future to prevent this but it seems that there just is no easy remedy. The great news is that Sydney's hearing turned back to normal immediately and she is back to hearing out of both ears. I guess there is probably a good moral to this story. I am sure that I could tie in a story about monkeys and always hoping for the best but, for the life of me, nothing really comes to mine. So, for the time being (until my brain starts working again), please assume that I told a really funny story that gave you a chuckle and also gave you hope. Until the next time when my brain will hopefully be as full of cleverness as my heart and soul are full of purpose.
ITS NOT HOOKY
4:34 AM 8/11/2004
Wow, am I busy. Work is busier that it has ever been and it is really starting to pile up. The good news is that clients seem to be rolling in. On the personal front, starting on Friday, we officially reenter scan week for Sydney. On Saturday I will be helping my mother move from Dallas to Fort Worth. On Sunday, I am officially launching the http://www.LunchforLife.org website in preparation for its September 1st official kickoff. There is still a tremendous amount to do - press releases to finish, packets to put together, website materials to write, stuff to order, you name it. I tell you I just don't have one minute to spare. To top all of that off my brother snuck into town for a visit yesterday. So, this is how I am going to fix it. I am going to go to the golf course this morning and really concentrate on how I could be more efficient with my scheduling. Perhaps that atmosphere will really get my mind going and I will figure out how to get all of this done. Oh, sure, you might be thinking I am playing hooky, but nooooo, this is serious preparatory planning. I might even figure out how to fit 48 hours into the normal 24. Regardless, I don't want anybody to get the wrong idea so please don't tell anybody I am out playing golf this morning. If they ask, just tell them I am working on some scheduling problems.
I have had enough and need a breath of fresh air but my purpose is clearer than ever.
5:00 AM 8/12/2005
So, I expected to be rejuvenated. You might think I would be better prepared to face yet another day. Well, as it turns out, golf is not as good as a "preparatory planning" activity as I thought it might be. Instead, I found it to be annoying and frustrating. It just didn't seem to make me relax and yet I know how relaxing and valuable it can be for organizing ones life and bringing the stars back into alignment. Yes, I know, it sounds like I am making it out to be a glorified Mecca but, well, it is. It must just be like anything else in life, I will just have to practice. Perhaps, if I play more often, I will become far more organized. It is worth a try. Anything to get life back in order.
I have mentioned before that I was not playing because I did not want to miss a moment with Sydney or Graham and that still rings true. I would rather spend time with my family than be on the golf course. ( I hope the golf gods didn't hear that.) But, what I found out yesterday is that I would rather be on the golf course than at work. So, if I play golf instead of go to work I am not missing out on anything and I am getting the best of both worlds. So, the problem is solved. Boy, I hope my partners don't read this diary anymore. They had better not. They don't have the time. They need to be working that much harder if I am going to be on the golf course.
Sydney is doing superb. She continues to put on weight and her activity levels are in turbo. She is being a kid and nothing could make me happier. She is everything that I would expect from a perfectly healthy 3 year old. She is annoying, obstinate, and demanding. God love her. Tomorrow we are going back to the clinic to have our final treatment checkup and begin the process of preparing her little body for next weeks scans. They really could not come at a better time. We are in need of our quarterly reassurance. Although the grueling schedule and treatments are over with, the fear still remains. It is amazing the thoughts that go through a parent's head. Her belly is now protruded. Just like the belly of any other toddler - healthily robust. But in my head, the fear is there. Is it full of food and nutrition and fat or is it tumor burden? It has been so long since we have seen her with a belly it is rather strange. It should be happy carefree times but I still find my self in a constant state of fear of the monster. It isn't incapacitating but it is fear, none the less. I don't know if I will ever overcome this hurdle but life is certainly livable and it is a burden I am willing to carry as long as it never comes back.
My purpose is stronger than my fear.
4:49 AM 8/13/2004
It is clinic visit time. Wow, this is a little strange. It has been nearly a month since we had an oncology appointment. This is going to be fun. Today we will be meeting with Dr. Granger in preparation for all of our scans next week. It should be a rather short visit. We will expect to hear that all is well and it will hopefully be more of a social occasion than anything else. Next week will be when the real nail biting begins.
This weekend is going to be jam packed. My mother is moving and we will be playing junior moving men on Saturday. On Sunday, I will be launching the new http://www.LunchforLIFE.org website for all of the families of Lunch for Life. We are far better prepared this year and I want to get them the materials before we officially launch it to the world on September 1st. There is still a tremendous amount of writing to be accomplished but we are getting closer by the minute. This is going to be good. WE might just hit our ten million dollar mark this year and boy do we need it. I have been gathering facts about childhood cancer and funding. I have been delving into annual reports and funding plans for just about every childhood cancer foundation and institution that I can find and, to say the least, I was tremendously disappointed. As it turns out, the largest childhood cancer foundation in North America, the one that supports the clinical and biological research at over 200 participating institutions and treats about 90% of the children with cancer in North America only received about half of its requested budget from the NCI and the federal government this year. I wanted to find out what that meant in terms of dollars and cents to neuroblastoma. That is where it got even more disappointing. This same organization spends less than half of its budget on actually funding research. Worse yet, the only fund neuroblastoma at 5% of that amount and that does not even come close to the actual percentage of children that get neuroblastoma per capita or address the fact that it accounts for well over 15% of the deaths. So, I put my brain to work. (After all, in a previous life I was an accountant.) What would make the difference? Well considering this organization spends a little over $.02 of every $1.00 raised on neuroblastoma, at this rate, they would have to raise 15 times the amount of private funding they did last year to meet the budget shortfall in neuroblastoma alone. This is our largest supporter of neuroblastoma research. This is the big dog. I haven't decided whether I will provide this information on the website. I really don't want to make this organization mad. This is an organization that I like. After all, this is the same organization that has financially supported the two trials that Sydney has been on. Right now, in our world and the world of childhood cancer, it is the driving force. But, something has to change. Doesn't it? Is it just me, or is this just wrong? No wonder researchers and doctors are screaming for more funding. No wonder we don't have the cure. Why can't it be easy? Why can't we just change it? If we don't, who will?
I thought I would put it into perspective. The government has a contract to build 300 bombers. Here is the test question for Monday. If the federal government built 299 bombers instead and committed the funding of just one of those bombers to pediatric cancer research funding how many years of research would that fund at current spending? You won't believe your ears. What is the cost in children's lives? You won't want to hear. I forgot how much fun it was to be an accountant. We will have the answers on Monday.
Until the next time, my purpose is now armed with facts.
6:00 AM 8/16/2004
I can finally take a really large sigh of relief. We finally finished the website and it is up for all of the parents to go through. There is still a lot to be done but my days of 4 hours of sleep a night are over for a while. I am really glad as I was starting to get loony - well, more loony. I think that we will be ready for our launch to the world on September 1st without a problem. The big thing now is lining up the press and getting the other pediatric cancer organizations involved. I imagine it will be a couple of busy weeks of talking on the telephone. Luckily most people sleep normal hours so it should not affect my sleep patterns one bit.
Sydney's doctor appointment went superbly on Friday. She has gained a little over 2 pounds since our last visit. Her counts are way up and she got the stamp of approval to go ahead with scans and surgery and, well, life. The good news about being so busy lately is that I did not get the opportunity to worry about her upcoming scans (as much!) Tomorrow we will be going in for her bone scan and her CT. I have no physically apparent reason to worry about the scans but I have a tremendous amount just because of what we are dealing with. One foot instep of the other Mark.
After finishing the website at midnight on Saturday I got the opportunity to spend most of the day with Sydney and Graham. We had a blast. Sydney is extremely talkative and, most of the time, loving. She likes to explain things. For instance, we were playing the imaginary grocery shopping game. We pack up - literally. We get all of the things that we need for our trip. We get juice cups, blankets, extra diapers, the ever important grocery list, you name it, we get it and we hop into the imaginary car. We put on our imaginary seatbelts and we drive to the imaginary store (I think we get the picture). Any way, when we were shopping at the imaginary grocery store Sydney decided to give me a fifteen to twenty minute dissertation on what type of foods produce what type of potty. We agreed on most items. Water and milk produce peepee. Most solid foods produce poopoo but we got into a rather heated debate over what type of potty juice produced. Her theory was "owie poopoos." Mine was peepee. She would have none of that and was clearly agitated that I challenged her superior knowledge of potty. God, it was fun. I really, really love being a dad. It just doesn't get any better than that.
Unfortunately, we lost another of our children to neuroblastoma yesterday afternoon. Little Haley Rose earned her angel wings. I have followed the family almost daily and spoke to her mother frequently when they were first diagnosed. Haley was a beautiful, strong little girl. Her eyes were as pure and full of joy as any that I have ever seen on any child. Although she was well behind Sydney in treatment the monster just would not go away. So say a prayer for a family who is sitting somewhere in America this moment trying to cope with the unimaginable. Give them strength and peace. I can feel it so clearly and my heart pains for them. I just isn't right. It just doesn't make sense. Why? Why? Why?
My purpose has been strengthened again. I am armed with their memories and I can feel it.
9:53 PM 8/16/2004
Okay, I know it is strange that I am writing at night but this is the first time I have really needed this diary for myself in a long time. Right now, everyone is asleep. I am alone with my thoughts. I am bothered and uptight. I cannot get little Haley Rose out of my mind. I keep going back to her website and looking at the pictures and reading her mother's words in utter disbelief. This can't be right. She can't be gone.
I think I have turned into somebody new. I am definitely no longer than man I once was. I am so more aware. I am so more feeling. It is an extremely wonderful gift to come from this tragedy but it also comes with many burdens. I can no longer accept the way things are and I find myself frustrated. It seems so clear to me and yet in the world that exists outside of my mind I know it is not. Why can't we fix this? Why can't we just make neuroblastoma go away? Why do these innocent little kids have to be taken one after another? At what point do we just say stop? At what point does it have to get before we say this is no longer acceptable?
Now, I realize I don't live in a vacuum. I realize that we live in a world of limited resources. I realize that there are other cancers, other diseases, and other tragedies. I realize, but I still can not accept, and I wonder. I wonder what makes the difference. What makes one cause chosen over another? What makes one life more important than another?
I am now on the inside looking out and I can't figure out why this was never important to me before Sydney was diagnosed with cancer. Why was I not affected? I think the reason is that I was not aware. I had no concept, no frame of reference to understand what these children and families were enduring. I certainly had no idea of the pain, and yet now, I feel it on a daily basis. I have thought about what it would be like if I lost Sydney to this monster. It is real. It is not one of those thoughts that just floats through my mind. I can feel it and taste it. Now, when I hear about the loss of another child it actually creates a physical change. My heart starts to race, my breathing becomes shallow, and I can feel a lump in the back of my throat.
I want to shake something. I want to scream from the top of my lungs.
So, what is the difference? Why should it matter and does it? I can no longer let things continue on the path that they do. I think part of my frustration also stems from all of the funding research that I am doing. I was looking through the National Cancer Institute's budget. This is the federal entity that doles out money and resources for all things cancer. Their federal budget was $4.6 billion last year. Of that, pediatric cancer received $154 million. All pediatric cancer. That is about 3%. 3 percent of the federal cancer research budget was spent on all childhood cancers. Is it just me? Is this shocking to you? To me it is but I no longer know if that would be shocking to me if I did not sit in this world. Considering that, right now, today we are spending over $1 billion per day on military spending. I am not advocating that military spending is not important. I think it is but can't we just convince them to take one afternoon off. I don't think it would put our lives at risk and it would save thousands of children's lives. It also goes to show that when something is important in our society we find a way to come up with the solution. Look at the response that we had to the Trade Center bombing. In less than a week we raised more than the yearly budget for childhood cancer for the families of those that lost loved ones in the tragedy We lost close to 3000 lives in a few minutes. With childhood cancer we lose that every year. Why isn't it important? What is the difference and how do I fix it. What can I do right now to fix it? I certainly do not have the answers and I feel like I am turning into a childhood cancer zealot. Am I?
My purpose is stronger than ever especially on scan day.
SCAN DAY PART 1
5:30 AM 8/18/2004
Yesterday was our first full day of scans. Sydney had a CT and a bone scan. Her CT went off without a hitch. She was a great little girl. She loves the CT scanner and, to this day, every time we go to the hospital she asks if we are going to go to the "Sydney tunnel" I stayed in the room with her throughout the procedure. She lied down on the bed and was absolutely still. I talked to her about pretending to be a sleepy kitty and she closed her eyes and stayed motionless for about 10 minutes. She did better than I could have done. The second scan, the bone scan, however was not so nice. By the time we had gotten injected and they were ready for her it was about 3:00. It was now, 3 hours past her nap time. She had spent most of the morning without food or drink and to say she was ornery would be an understatement. I love my daughter to the moon and back but, boy, was she awful. Sometime between the CT scan and the bone scan a switch was flipped. She became angry, obstinate, and maniacal. She would not stay still which meant we had to do the bone scan over and over. They do the bone scan in about three sections and then they take another view of her head from another angle. During the first three scans she was constantly moving and she was doing it just to be a twerp. The last scan of her head went pretty well. Her head had spun so much during the earlier scans that it actually came off and we were able to just sit her head on the table for this final scan. By about 4:30 we had finally finished about 12 minutes worth of scans.
As usual, I played amateur radiologist. At first, I was horrified by the results. There was a huge black goober on her left leg, mid calf. I knew this was not good but I was quickly corrected as they were nice enough to point out to me that it was, in fact, only the mouse pointer from the computer. Now with that being said. Here is my interpretation of the results. I did not see any obvious signs of cancer. For the most part, what was white and grey was supposed to be white and grey and what was supposed to be black was black. Her growth plates were darker this time around but that was probably just a result of the contrast material. I was concerned about her cranium and her jaw line. It looked to me as though there was far more uptake on her right side than her left in one of the sets of scans. I told the radiologist that I was going to be nervous for the next week. She pointed out that the difference could be due to her positioning and that she did not see the same thing in another view that she pointed out to me. I don't think Margaret was impressed with my ability to play amateur radiologist. So, in the end, I really don't know. We will just have to wait and see. I really am not a big fan of scan week.
Today is a day of rest. Our next set of procedures will occur tomorrow. I will be home with the kids as their Nanny has been hospitalized and we do not expect to see her back for at least a week. We are hoping that she is okay. We really have not heard much about her condition or which hospital she is in. I really don' mind staying at home with the kids. I am used to spending a ton of time with them and with all of the work on Lunch for Life I have not really gotten the chance to focus on them as much as I would like. This will be a great day.
Mr. Mom has a purpose.
4:40 AM 8/19/2004
Yesterday was a great day although there were two bloody episodes. First, I am proud to say that my manly son has cut his first manly tooth in his little slobbery manly mouth. Much to Lynley's chagrin I still call him "Dudely" (emphasis on the "dude" part.), but Graham (as she calls him) continues to grow and flourish. He is perhaps the happiest child I have ever seen in my life. Over the past few months he has become far more animated and his little personality is starting to show through in flying colors. For me, it is a chance to relearn life through his eyes. I forgot, in just three short years, all of the wonderful things a child his age (almost 6 months, can you believe it?) is discovering. It is the pure joy of seeing things for the first time. They are really simple things like his reflection in a mirror, a butterfly outside, the taste of banana yogurt. In his world these items are all brand new. He has such complete joy when he discovers these new things. It reminds me how tainted we become with age and how familiar we become with life. We forget to take a moment to appreciate the littlest of things. He is only an infant and yet I am already learning from him. Thank you, Dudely.
Our second "gorefest" that occurred on the day that Mr. Mom was in charge was Sydney's sliced up toe. Now, I told Lynley that after I had taught her to chop up cheerios with a meat clever she seemed to be in control of things. So, I thought I would leave her for a moment and go watch TV and drink a beer in the other room. (By the way, Lynley did not appreciate my sense of humor.) Really, what happened was that Sydney was trying to move some chairs on the back porch and she accidentally dropped one of the metal legs onto her pinky toe. She received about a half inch gash running from the base of the outside of her toe up and over the top of her little toesy. She really sliced it up pretty good. I immediately took her into the kitchen and washed it out, put some bactroban ("top it" in Sydnian, I guess she got that from us telling her we were going to put something of "top of it.") and a band aid on it. We snuggled for the next hour and although she had a limp then, by the end of the day she was once again running around the house like a Sydney with a purpose.
Today will be our last set of scans and tests for this round. Sydney will have an MIBG scan, a bilateral bone marrow aspirate, an ABR (hearing test), an EKG, and an ECCO. She will be under anesthesia for all of these tests and procedures. It will likely take most of the day and we will not expect to hear any of the results until at least tomorrow. It should make for a very busy day and then a nerve-racking couple of days as we wait to hear the "all clear" sign. Until then, I still have a purpose.
5:50 AM 8/20/2004
Scan week is officially over and now we get to sit back, bite our nails, and wait. Yesterday was fairly uneventful from the scan point of view. Sydney was sedated at about 1:00 PM and she slumbered through the multitude of procedures without a care in the world (until 5:30PM). We still have not heard back on most of the results but we did get the chance to sit down and hear about the results of her ABR (hearing test) and this is the unfortunate part. Sydney ability to hear has continued to deteriorate over time. She now has moderately severe hearing loss of the high pitches in both ears and it appears that her right ear, the good one, is now worse than her left. This was somewhat expected but we certainly were hoping for otherwise. It is not believed that her hearing will ever improve in these ranges. The scary part is that we have started to see deterioration in both the mid and low ranges in both ears as well. Her hearing loss is just above the point, and I mean just above, where she has the ability to recognize speech. The good news is that this could in fact be temporary. They found some inner ear pressure problems which could have effected the accuracy of the test in these ranges. The plan of attack is to wait and retest her in the booth in about three weeks. If it shows improvement we may be able to skate by without having to get her hearing aids. If not, however, hearing aids will be in Sydney's very near future. As with everything else in this journey we are just going to continue to put one foot in front of the other and hope for the best. At the beginning of this journey we realized that there would be a high probability that Sydney would have hearing loss from the ototoxic chemotherapy regimens that she was to receive. We knew it was a risk of the therapy. I don't like it. I don't want her to have to face another hurdle as I think she has a lifetime of her fair share already. But... I can touch her. She is still here. And If I have to shout from the rooftops to tell her that I love her then that is exactly what I will do. It isn't fair and it isn't right but it is what it is. We will do what it takes! God love her, whether she hears you or not.
My purpose is growing.
UNOFFICIALLY ALL CLEAR
5:00 AM 8/23/2004
I love my oncologists but they qualify everything. That is probably due to the fact that I start pounding them with questions the second the scans are complete. Most of Sydney's scan results are in draft form but we have received some very good preliminary news. Sydney's CT scan was negative. This means that they did not see hide nor hair of bulky tumorishness. Sydney's Bone Scan found the same things that it always finds. There is some destruction on her right proximal humorous. This "spot" has appeared since diagnosis and has shown no change. It is not believed to be neuroblastoma. The bone scan also showed a spot on her right ankle. This statement was qualified with a bunch of medical statements that basically said. "I am not too worried about this, the dang wiggly kid would not keep still and the angle was not very good." I am also aware that she had twisted this ankle the day before. Neither of these spots were confirmed in any of our other tests so that would also indicate that the differences were not due to neuroblastoma. Dr. Howery previewed the bone marrow aspirates and said that they looked clean and he saw no little blue cells. It will be a couple of weeks before we get the official studies. We still have not heard back on her cardiac tests but we do not have any reason to worry. I think that I am far more likely to have a heart problem but I do not think they can tell that from scanning Sydney. The preliminary results from the MIBG scan were all clear and I am happy to say that although heavily sedated (totally asleep) she was much better this time around. It ought to be interesting to see what type of qualifiers the radiologist puts on this report.
So, where does this leave us? Tomorrow Sydney will have minor surgery to remove her broviac. These are the tubes that have been protruding from her chest since diagnosis. This means that she will be able to swim, bath, and do all of the things my little water loving purpose likes to do. The surgery is scheduled at 9:45 AM and it is not expected to be difficult. On Wednesday we will have our final treatment wrap up with Dr. Eames. I imagine this will be one of those qualifier conversations. Something like, "Congratulations on completing therapy. Sydney is showing no evidence of disease BUT..... I will leave the buts until tomorrow. Today I have a purpose.
5:15 AM 8/24/2004
Well, today marks a momentous occasion in our lives. Today Sydney will have her broviac (noodles) removed from her chest. We will no longer have dressing changes. We will no longer have to change the caps. We will no longer have to flush them with heparin every night. We will no longer have to wrap her chest in an ace bandage to keep them up and out of the way. We are finished, kaput, no mas. Sydney is, to say the least, ecstatic. She has been looking forward to this day for months. In fact, she had a lot of trouble going to sleep last night. She kept calling me into her room because she wanted to talk about it. "It is time to go to sleep Sydney." "Daddy, I get my noodles out tomorrow?" "Yes honey, now go to sleep." "No daddy, I want to talk about it." - silence - "Daddy, I am getting my noodles out tomorrow." "Yes, baby girl but you need to go to sleep." "I am only going to take a small nap." "Okay sweety, but go to sleep." This scenario played out three or four times but thankfully she finally fell into a listless slumber and her small nap turned out to be a long night of rest.
On the separate subject of parenting, I find myself challenged. Our three year old little twerp is pretty clever and she is testing us for all that we are worth. She knows the difference between right and wrong but seems to be enjoying being a bad little girl. The subject of the day is hitting. Sydney will hit when she does not get her way? She doesn't hit hard and she knows that she is not supposed to do it and she will even test her limits. When she gets mad she will start pawing me. She is looking for a reaction. She continues to paw at me and each swipe gets harder. She is just testing to see how far she can go. It is conscious and she is aware of her behavior. I will warn her and she will respond with an evil gleam in her eye and paw at me just one more time to test her limits. This always results in punishment. Sometimes we place her in the naughty chair. Sometimes we send her to bed without cuddles in Mommy and Daddy's bed. Sometimes we take away her blankets and toys. Regardless, every time she behaves this way we try and find a suitable punishment and we try and choose something that is important to her. There is no doubt in my mind that she is aware. Just yesterday morning she was carrying around her baby, a stuffed animal. All of a sudden we heard a loud "No! Bad baby, Bad, bad baby." Lynley asked her what had happened and Sydney told her that the baby had hit her. Sydney then set in motion a sequence of punishments for the baby. She tried the naughty chair, no cuddles before bed, taking away the blankets and, yet, the baby was still misbehaving. It was funny to watch her go through the motions and to be honest I was interested to see if she would succeed at keeping her baby from hitting. I have become so acclimatized to learning from my daughter that I found myself looking at her for parental guidance. Could Sydney, find a way to keep her baby from hitting? I had to laugh as I caught myself in thought. Although I did not find the answer to our parenting issue and I did not solve the problem, I did discover that she was aware of her actions and that she understood the repercussions of her actions. Once again, I am still faced with a problem, but oh what a nice problem to have. I am lucky and I have a purpose.
4:43 AM 8/25/2004
No noodles! Hmph! Who would have thought? But yet, there she is. No Noodles. This is kind of a difficult concept to grasp. We have become so used to the noodles hanging out of her chest that it has taken a while to set in. This really is a defining moment. It is a glaring beacon that we are finished with therapy.
Yesterday started out fairly complicated. Sydney woke up fairly early and to our surprise she had played with her noodles at some point last night and even partially removed her dressing. This is a big "no no" and it was the first time she had done it since they were placed well over a year ago. Ordinarily this would have been cause for great drama and swift punishment but, today, she was having her noodles removed. So, with out any repercussions we quickly slipped her into a new daily wrap dressing. The morning was filled with more jabbering about noodlelessness and we were even serenaded by Sydney with a rendition of "Mary had a little lamb" with the words "Sydney has no noodles." It was pretty freaking adorable if I must toot my own daughter's horn. Her fascination with discussing her noodles lasted right up to the point that we were walking down the lovely halls of Cook Children's to go to the operating room at which point she realized this was the end. She hugged herself tightly and said, "I don't want to take my noodles out. I love them." and rocked herself gently back and forth. She knew what was coming.
Which brings up an interesting point. I have not had the opportunity to talk about medical stuff in quite a while. Well, here is my shot to resharpen my medical acumen. I can discuss the details of this minor surgical procedure in detail as we were there to watch (and hold) first hand. Here goes. The surgeon scrubbed up. He placed sterile gloves on his hands. He gathered his nurses and assistants. He made sure everything was in order. He talked to Sydney to calm her down and then - then - then - he yanked it out. Yep, yanked it out. Pulled it plumb out of her chest. That was it. No more noodles. Just yanked it out. He even used the word "Yank." I would have expected something more official like complete noodle resection, or noodlectomy, or denoodlification. But nope, he yanked it out. For Sydney it was not a necessarily pleasant experience but it was not that bad either. It took less than 2 seconds for him to perform the delicate "yanking" procedure. That was followed by roughly five minutes of applying pressure. Sydney calmed down relatively quickly and I think she was more upset about the shock of the experience and the pressure than the actual procedure itself. Later in the day, she would describe the procedure as only a "little owie." After the pressure she was finished and a couple of minutes after that she was back to terrorizing the halls.
In my head I knew the removal of the noodles was a simple procedure. After all, I had seen it before when they had placed her apheresis catheter (the one used for stem cell collection) I was amazed then as I am still amazed now. This catheter (the noodles) went into a very large vein and ultimately made its way to the heart. I remember seeing scans of her chest and we could see the tip of the catheter in her heart. I knew that they would just pull it out but I still expected more. I am still in a little bit of shock. Noodles had become such a fixture in our lives. They defined much of what we did and how we spent our time. Now there just gone. This will require a little adjustment. Today, we will have our final wrap up session with Dr. Eames. This is the "but" conversation that I alluded to before. This ought to be interesting. Luckily, I will have my purpose to comfort me.
THE "BUT" REVIEW
5:10 AM 8/26/2004
We spent several hours with Dr. Eames yesterday morning. It was our final therapy wrap up session, a retrospective look at where we have been, where we are, and where we are going. We discussed every aspect of Sydney's treatment and what it means for her future. Sydney is officially off treatment and today marks another day 0 on her calendar. Much of her progress will be measured from today as well as the day that she received her stem cell transplant. Sydney is considered in a complete remission. You notice that I do not use the term cured. Unfortunately, that is not a term that they ever use to describe kids that get stage IV neuroblastoma, and hence, the reason for Lunch for Life. So, what does it mean? It means that they can no longer detect any levels of cancer in Sydney's body. Unfortunately, there is no guarantee that there isn't any there. Dr. Eames was quick to point out that the tests simply aren't sensitive enough to guarantee that Sydney does not have neuroblastoma existing in her body in microscopic amounts. There is simply no way to tell. What does it mean about her chances of overall survival? Sydney sits in about as good of place as one can sit. She hit all of her milestones. With that being said Dr. Eames estimated that Sydney's chance of overall survival was somewhere above 40% to 45%. There is no absolute number because, unfortunately ,there just weren't a lot of Neuroblastoma survivors in history to come up with a solid number. If you look back in the research you will find trials that have been completed for about ten years which show a ten year survival rate of about 30%. If you go back 20 years you will find an overall survival rate of about 10%. Now these statistics are based on kids who did not receive Accutane, transplant, and certainly did not receive the courses of immunotherapy that Sydney did. So, we know our odds are better that that. How high? Well, unfortunately, there just isn't enough time between when the last large trial was completed and today to know for sure. Dr. Reynolds, one of the leading oncologists in neuroblastoma research put it this way:
"As I reported at the 2002 ASCO meeting (abstract published on the ASCO site), for high-risk neurobastoma (ie. stage 4 > 1 yr, or "bad" biology stage III) patients who were in the CCG-3891 trial and randomized to get both stem cell transplant and Accutane, *and* got those therapies prior to disease progression, the overall survival rate at 6 years was 59%. If one limited the analysis to only stage 4 patients > 1 year old, the overall survival at 6 years was 53%."
So, we have a good fighting chance. I know it seems that we certainly went through a lot of torture to Sydney to get where we are today. We went from an initial chance of survival somewhere between 20% to 25% to somewhere greater than 40% to 45% but she is here. She is whole and right now she has her life in front of her. The battle is not over and the next two to three years will be critical. For everyday that she does not relapse her odds of survival continue to increase. Hopefully, for her and so many other kids that sit in her shoes, we will find a cure before they any of them ever need it. Much more needs to be done. Tomorrow, I will go over the some more of our conversation. I will discuss side effects, what we can expect, and what we already know.
My purpose is yearning for a silver bullet. Until tomorrow.
BUT - Part 2
5:25 AM 8/27/2005
You might expect that most of the side effects that Sydney would be exposed to would have already come and gone. Unfortunately, that is simply not the case. We are extremely lucky that she tolerated treatment so well but there are still hurdles that can potentially crop up in her future. The most notable is her hearing. Sydney's hearing can continue to deteriorate for several years after therapy. The good news is that parts of it could also get better -although that is doubtful. More than likely, Sydney will require hearing aids. In discussing all of the potential side effects Dr. Eames went through just about every system in her body and the fact that she did not have many complications throughout treatment bodes well for her. It is not anticipated that Sydney will have any neurological effects from treatment. As is the case with many of the things we learned from Dr. Eames it is also far less likely to occur in the future. Although she received several neurotoxic drugs it is believed that if we were going to see something we would have seen it by now. It is also not anticipated that we will see Sydney experience any problems with her kidney's or her liver. In this area most long term effects are generally related to treatment and resection. Sydney did not have any problems outside of some water retention and Dr. Eames does not believe this will be a problem for us. One of the bigger areas of concern over the long term is her cardiac and pulmonary systems. She was extremely young (under 4) when she received the agents that were toxic to these areas of the body and, unfortunately, that puts her at greater risk for long term side effects and problems. Right now, we do not see any reason for concern but these can become an issue any time in her future. Both her lungs and her heart will continue to be monitored for years to come. She will be able to do anything in life that she wants but if she decides to be an active athlete (I am holding out for the Olympics) we will have to monitor extremely closely. On the reproductive side of things, we simply do not know. It is expected that she will have no problems going through puberty but we simply will not know if she has reproductive capacity until she is much older. I am guessing that there is about a 50/50 shot. We will simply hope for the best. We have gotten really good at that and I am forever thankful that we stand where we do today. It has been a long road but it is so nice to see her happily engaging in "normal" life. On Monday, she even starts school. We could not be a luckier family. Unfortunately, there are no guarantees and we must live everyday to its fullest and in the meantime I have not lost sight of my purpose. There is far more to do. There are simply to many lives at stake.
LIFE, LIBERTY AND THE PURSUIT OF HAPPINESS
5:30 AM 8/30/2004
Every once and a while on this journey you have to sit back and just breath. You need to have an appreciation for where you have been and where you are going. Today marks one of these milestones. Today Sydney enters preschool. I always hoped that we would get to this point but I just never knew for sure. It is going to be an incredibly good experience for her. Of course, that assumes that she does not send her teacher into an early retirement. For the most part, Sydney is doing extremely well. She is playing, swimming, and doing all of the things that you would expect a normal child to do. She has put on weight and the healthy glow is starting to return. Her only real barriers at this point are ones that we have caused as parents. It isn't to say that we have made severe mistakes. Sydney just hasn't had the opportunity to be exposed to "normal" life. She has been spoiled rotten - all with good intentions. I don't know how you could go through therapy, through all of the hospital stays, without spoiling your kids. There is such a need to bring them comfort. Well on the back end, when it is all said and done, you can be left with an incredibly loving, sweet, beautiful, inspirational, spoiled, little brat if you are not careful. I don't say that to be harsh. This is actually something the nurses and doctors warn every parent as they go through this experience. We know Sydney will be happier the more quickly she readjusts to normal "kid-dom." We want her to have every opportunity she would have had before this whole mess began. We still have many battles to win the neuroblastoma war but I am incredibly excited about this new opportunity. I know today will be difficult for her and I know that she will not want to leave Mommy and Daddy but this will be such a good experience. Just think, in a little over an hour, my pride and joy will be starting her life all over again. It is a new beginning. I can't wait to see what happens. My purpose is growing.
5:18 AM 8/31/2004
Sydney is officially a preschooler. We dropped Sydney off at about 8:00AM yesterday morning. We had the opportunity to spend about 30 minutes talking to her teacher. As it turns out, the teacher's daughter was diagnosed several years ago with non-Hodgkin's lymphoma. I have to say that it was quite a comfort. She certainly has an understanding of where we are. We covered the basics with her, but ultimately, Sydney really does not have any special needs at this time. Sydney became comfortable within minutes and she was running around playing with the various toys as we talked to her teacher. I was at ease from the moment we stepped into the building. After our conversation we took Sydney out to the playground to meet the other kids and guess who was there, the little boy wonder, Preston. (This is Sydney's current love interest's, Truman's, little brother.) I think she found it to be very comforting that she knew somebody at her school. By the time we were ready to leave Sydney did not have a care in the world and our goodbye was rushed as she scrambled to play with the other children. I was surprised. I was not worried about Sydney. I felt that she was in good hands and I was confident in her ability to adjust. After all that the last year has brought her way there was little doubt in my mind that she would acclimate quickly. Before hand I was a little concerned about how she would react without us but after watching her I knew that she would be just fine. If everything in the world could just go this smoothly.
By the time lunchtime arrived I was back at the school to pick her up. She had already eaten and was lying in her bed comfortably for naptime. She was happy. I spent the next 15 minutes talking to her about her day. She was ecstatic and ready to go back. She had a wonderful time and enjoyed telling me about all of her new friends. She was clearly worn out. She had a blast and was not entirely used to the bevy of activity. In the afternoon she would rest long and peacefully. I don't think it can get any better than this. Of course, I have thought that before. My purpose is calming but still searching for answers.
A YEAR OF PURPOSE
4:15 AM 9/1/2004
Life continues to be a journey. Over the last year we have come a long way. Sydney and I would be honored to share a lunch full of purpose with you.
6:20 AM 9/2/2004
Yesterday marked the official launch of "Lunch for Life" this year and I am reminded at how incredibly fulfilling this endeavor can be. It is the sense that I am doing something. The sense that I have control in Sydney's battle. Much of this journey that Lynley, Sydney, Graham and I have endured has been filled with helplessness. Knowing that there is no cure and knowing that Sydney's fate rest in the hands of "maybe" and "possibly" provides hope but, unfortunately ,few answers or guarantees. Why have we been blessed to make it this far? Why has Sydney received the gift of life? Most importantly, Will it last? There are no answers now, but, with "Lunch for Life" there is purpose. There is more hope for the future. We have power to create change and that is a great gift in the world of Neuroblastoma.
This year many of you have followed our lives on a daily basis. You have shared both our ups and our downs. You have watched and comforted us as we all did our best to care for Sydney as she was jostled by this nasty disease. Somehow we made it through and its thanks to your hopes, prayers, and well-wishes. After all of that, how could I ask for more?
It is too important. There are thousands of children at stake.
There is no cure for neuroblastoma and, even worse, there is little funding to support research to find a cure. There are literally hundreds of drugs that have been shown to have a deadly effect on neuroblastoma, yet, the research sits on shelves because there simply isn't enough money to take research on these drugs to the next level. Our answer, the gift of life for these kids, could be literally sitting on a back shelf in a lab somewhere in America. We can change this. We can speed the process and we can find the cure.
Childhood cancer, in general, is under-funded, especially when compared to that of adults or that of other diseases. Neuroblastoma receives even less of this share. We need a shift in the way people think. It isn't that they don't want to help these kids. It is that they don't know the reality of this dire situation. It is my belief that if they knew what these kids endured, if they knew that this problem existed, they would make the change. Hence "Lunch for Life". We, as an ever expanding group of families and friends can make the difference. We can raise the "lunch money" to fund research and, just as importantly, awareness. So, I ask your help. I ask your help for Sydney, for all of the other children that have been stricken with this disease, and all of those yet to be diagnosed. I ask you to help me shout from the rooftops. I am only asking for one lunch but, if you can, please help me share their stories. Help me create the awareness that will lead to the cure. The more people that hear our plight the quicker we will get to a cure and ultimately win the war on childhood cancer.
So, today, I ask you to go to http://www.lunchforlife.org and donate your lunch to help fund a cure, but more importantly I ask that you also spread our message to your friends and family. If everyday we spread our message to five friends, and those five friends spread the message to theirs within 30 days we could raise more money than has been spent on neuroblastoma and childhood cancer research since the beginning of time. It is that powerful, but it depends on us. It depends on us to spread the word. If you can, I ask you that you take our stories to your schools and businesses and help spread the word. I know that is a lot to ask but it will be the difference. You and I, right now can fund the cure. We can save lives. Let's take the world out to lunch.
Thank you for your help and I thank you for sharing my purpose.
5:50 AM 9/3/2004
The last few days have been simply amazing. I have received literally thousands of emails and more seem to becoming in by the minute. Most of them are in regards to "Lunch for Life," but I also have my usual slew of mortgage and viagra spam. I am tempted to spam them back with 500,000 email about "Lunch for Life" but I know it would not do any good. I was particularly bad this year and did not send out all of my "Lunch for Life" letters on the first day. I suppose I was setting a bad example, but with everything else that is going on I really did not have the time. With over 100 families participating in the event this year there has been far less time to write which is my favorite thing to do. I think all of the writing was one of the things that did us so much good last year. That was how we got several of the articles in Family Circle and Parenting, etc. You just never know when your message is going to create that eureka moment for someone. That moment when they discover that they can help and how incredibly important they are to these children. Today, I am planning on writing several of the daytime talk shows. I know we had many written to Oprah, Dr. Phil, etc. last year but you just never know when the right person is going to read your message and make things happen. I would love to see Oprah give up a Lunch. That would have a huge impact and really benefit these kiddos. You just never know.
I have also been creating a collage of sorts. It is partly a scrapbook and partly a work of art (okay, that is questionable) of this entire experience. When Sydney gets older I want her to know what an impact she has had on people. She is going to be different. She is going to have side effects from this journey but I want her to know that it is okay. I want her to realize that even when life gets you down that you control your destiny. Like Alex Scott said, "when life gives you lemons, make lemonade." I want her to know that she was inspiring and strong and that she has the power to bring others comfort. I want her to look at this experience as one that gave her the gift to create change and comfort. I want her to know that because of this experience she is a better person and it is up to her to decide how to use it. I want her to realize that there is a silver lining to every cloud but it is up to her to find it. In life, if she is not happy then this disease has won. I need to provide her the tools to find her happiness. This collection will hopefully show her that even as bad as things were she can inspire great things. Ultimately it is up to her to define this experience and how it defines her life but I think it is important to also look at all of the positive that has come out of it.
Once again, it is all perspective.
My purpose brings me comfort.
6:42 AM 9/7/2004
It was an incredible weekend although it has left me pretty far behind. I decided to take two days away from the computer. I spent time enveloped in my family. They have been extremely patient with me while I worked long hours to get "Lunch for Life" up and running this year. I had spent most of my spare time, ever since we got back from the conference in Julym working on the "Lunch for Life" website and although I still spent a lot of time with them my mind was not always there. It is a difficult tradeoff. I want to spend as much time as I can with Lynley and my kiddos but this is also extremely important to me. In some way I feel like I owe my dedication to this cause. It has also given me strength at times when I needed it the most. Like anything else in life it requires a delicate balance and I have to be careful not to let it consume me. I just want, so bad, to bring this disease to an end. I still talk to newly diagnosed parents on a fairly routine basis and it absolutely breaks my heart to see another child enter this world. Short of losing your child I can think of nothing worse. It should not be this way and it irritates me that something has not been done about it. The world, more specifically the United States, has the resources to put an end to this. It just isn't a priority and I do not understand why. We are not talking about that significant of an amount of money in the big scheme of things. Okay, I am off my soapbox, back to reality and fun.
This weekend we went to Fossil Rim to see the wild animals. This is one of those wildlife parks that allows you to drive through. The whole Fort Worth family jumped in the car for the trip. It included Sydney, Graham, Lynley, DeeDee, Gammi, and I. We saw giraffes, zebras, rhinos, cheetahs, and a ton of hoof stock. Sydney loved feeding them from the car window. Sydney even made friends with the owner's daughter who had been dressed up in a large giraffe suit. They made such good friends that they have invited her back for a behind the scenes tour. Once the temperature comes down a little we will make another jaunt out to see them. I think Lynley will be posting pictures of our safari trip soon.
On the holiday we had Truman and Preston over. This was the first time they had really played since Sydney had her noodles removed. I must say that I am contemplating having her noodles put back in if the level of wrestling and hugging and all around closeness between the three of them does not subside. It was great to watch her play so "normally" with them but, on the other hand, my Daddy protection mechanism kicked in and I had to be partially disgusted with the cuddling going on during the movie. If this feeling is what a normal father of a daughter experiences that is fine but, I still don't have to like it.
Unfortunately, I have to run. There is a tremendous amount of writing to accomplish. I am on a mission. Lunch for Life will lead to the cure. I have a purpose.
4:43 AM 9/8/2004
Why do children act better at school? I would really like to know. We have heard nothing but good things about Sydney since she went to school. As Lynley picked Sydney up from school yesterday she found Sydney still eating at the lunch table. The other kids were playing on the other side of the room. Sydney slowly finished her lunch and then, get this, gathered up all of her trash and threw it away. She then cleaned off the table and then finished, in Lynley's amazement, by washing her hands and face. I know Lynley was astonished. She talked to me about it all the way home. I found Lynley to be in a total state of shock. Not only had she never gotten Sydney to do that at home in the three years of her life, she has had trouble getting me to do it in 8 years of marriage. I tried to explain to her that it was because there were six kids in her class and that it was a case of monkey see - monkey do. I told her that the solution to reproduce that behavior at home was, obviously, to have 4 more kids. Let's just say that she did not appreciate my logic. I then pointed out that we did not listen to her because she did not appreciate our logic. Again, she did not appreciate my sense of humor. Regardless, Sydney is thriving and adjusting well to school.
On the "Lunch for Life" front, we received our first newspaper story this year. Kyle Taulman's family was featured in The Journal-Standard, an Illinois newspaper, in an article about "Lunch for Life." I started receiving several calls from reporters around the country and I am hoping that the grass roots nature of this event is starting to take - well - root so that it can really start to spread. Today will be about spreading the word to as many people that will listen. It is time to take action. Please help me spread the word. We have a purpose.
4:50 AM 9/9/2004
Sydney took the day off from school yesterday and stayed home with Martha and Graham. When I asked her how her day was she was not nearly as excited to tell me. After school I usually hear a fifteen minute dissertation but today I just received: "I played with baby brother, then I ate, and then I played with baby brother again." I have come to really like the fact that she is going to school. She is getting challenged. Lynley and I talked so much about her need to develop social skills but I am seeing much more than that come to fruition. She seems happier and the whole ordeal has made life seem that much more normal. To be honest, I thought I would be nervous and uncomfortable but I am far more relaxed. I trust her teachers and the school. From the minute she gets there in the morning until the minute she leaves I do not have an ounce of worry. It is so incredibly good for her. She seems to have fit right in. I was so concerned about her getting along with other kids her age but, once again, she has surprised me and shown me how resilient she can be. I do not know what it is about life that sucks the resilience from our bodies as we age but I am continually amazed at her ability to adjust to change. Yes, I know, I should not be surprised. She went through her entire treatment and just took it in stride, much of the time with a smile on her face. Why would I expect her readjustment to a normal life to be any different? I guess the reason is that I have changed. I am an entirely different man than I once was. My excuse is that I do not want to change back but to be honest I don't know that I could even if I wanted to. To me, the fact that Sydney got cancer is a life experience that now guides who I am. It is a part of me. It is a constant fixture in my life. I live it. I breathe it. It defines me and who I have become. For Sydney it has not. It is just something that happened. It was another hurdle to jump and she just took it in stride. I wonder what the difference is? Perhaps, it is because I have a purpose.
NOW HEAR THIS
4:45 AM 9/13/2004
Well, I clearly missed a Friday update. I was up late Thursday night and did not quite make it up early enough to write in my diary. Friday morning was busy, right from the get go. Sydney had an audiology appointment at the hospital first thing in the morning. We were hoping for good news. Unfortunately, it was bittersweet. Sydney's hearing appeared to mildly improve in all areas. She can hear with only mild hearing loss in the low and mid pitches. Her high pitch hearing, however, shows moderate hearing loss in both ears. We were advised to get her hearing aids. She would be considered a borderline hearing aid wearer which seems to make this decision that much more difficult. It is extremely important to Lynley and I that we give her the best opportunity to develop speech and language skills. Even though Sydney is compensating and shows no outward signs of her hearing loss we know that the high pitch hearing loss can effect her ability to form speech over time. It seems like a rather easy decision doesn't it? Well, it was much easier before we saw the hearing aids. Because of Sydney's age we will not be able to get her the small "hidden" aids but rather some large bulky hearing aids that will fit over her ear. It is a difficult transition for me. It isn't that it bothers me personally. It is because I don't know how to give her the tools to deal with it as she gets older. Here my beautiful little girl is going to be outfitted with two obvious signs of disability and it pains me to know that she will be taunted throughout her elementary and mid school years. Worse yet, I don't have the experience to guide her through this challenge. I think that is what bothers me the most. To be honest, I don't care that she has hearing aids. It doesn't bother me in the least. She is my daughter and I love her anyway that I can have her. My concern is for her and how this impacts who she is and what she can be. I don't know how to make this better. I don't know how to put a positive spin on this experience.
I have always been one to find the silver lining in every cloud. I can find a good to come out of every bad. But this, well, I haven't discovered it yet. Perhaps, it will make her smarter. Perhaps, it will make her a better student. Perhaps, it will make her a better person because she is more sensitive to others. Perhaps, by meeting this challenge, it will make her stronger. I don't know what the answer is but I am just terribly hurt for her. I don't want her to have to carry this burden and yet I know there is nothing that I can do to carry it for her. I will have to find the tools to get her through this. I will have to discover the strength to learn to live with this as a challenge and not a handicap. I have a lot of learning to do. I need to discover how this will have a positive impact on her life. I guess, in one sense, it is already having a positive impact. I am focused intently on her. I am learning through the process and it is clear that I have a renewed purpose.
OH I AM IN TROUBLE
5:40 AM 9/14/2004
Yesterday was an extremely busy day at work and with the exception of a 1 hour Dr. Debbie visit for Graham it was a 16 hour work day. It turns out that Graham is now officially 6 months old and is growing appropriately - for the most part. He is now in the 50th percentile for weight and the 75th percentile for height and head size. It may turn out that he does not have twin brains after all. The thing we did notice was that his feet were growing disproportionately to the rest of his body. Don't get me wrong. If he was 6 feet tall his feet would be the perfect size. But for him, I am sad to say, he was blessed with my feet. Yes, Graham will go through years of taunting. He will spend much of his formative years just like me. People will compare him to one of those clown punching balloons that flip back up on end every time that you push them over. The good news is that he will be able to snow ski without any equipment and water skiing barefoot should be a snap. Yep, both a gift and a curse for my little Dudely. Like father like son.
When I got home last night it was dinner time. Sydney was in a great mood although she was clearly a little worse for wear. Her clothing was disheveled and her hair was on end. It was clear that she had quite a rambunctious afternoon. As we sat and ate I asked Lynley what Sydney had been up to. I said, "Sydney looks like Don King was she playing with the electrical sockets again?", jokingly. Unfortunately, Sydney caught wind of my statement and very emphatically exclaimed "Daddy I don't look like a donkey, I am pretty!" I said "Sydney I said Don King not donkey." Unable to make the distinction she looked straight at her mother and said "Mommy, Daddy called me a donkey again." What a little, tattle-tail twerp. Later that evening as I snuggled with her in bed she looked straight at me and said, simply "not a donkey" and flopped over to look in the other direction. Boy, am I in trouble. Regardless, I am sure she is going to run into school today and tell her teachers and all of her friends that her Daddy called her a donkey. Then there will be interviews with school administrators, counselors, and child protective services. You can't win them all. I will have to be more careful with what I say. I can't have my purpose mad at me.
5:10 AM 9/15/2004
Another day has dawned and we are getting ever closer to another weekend. Where does the time go? Sydney is doing well although her nose barometer has started to change colors. For those of you who have not seen the nose barometer, I will explain. For well over a year, Sydney's nose has run - pretty much non stop. The theory is that the chemotherapy affected the little hairs in her nose. At some point in the future we would expect the constant drip to stop but for now it just runs. The great thing about Sydney's runny nose is that you can always tell when she is healthy or when she is coming down with something. When she is well it runs clear. When she is coming down with something the color starts to change so we get a forewarning of impending sickness. It is a handy little feature. We can always tell when she is coming down with a bug. Well, yesterday we started to see that the snot (snot is a technical term for the special substance which tells us whether she is sick or not.) was starting to become cloudy. This is a sign that Sydney is coming down with something. It is kind of like looking at a pregnancy test - if it has color you are in trouble. It ought to be interesting as this is the first time that we have been sick while not being immuno-suppressed in well over a year and the first time since ending treatment. This could be just normal sickness. No hospital visits, nothing. How exciting and completely new. I am sure that if she starts to develop fevers I will become sufficiently paranoid but for the time being I am complacent and welcoming some normalcy.
We are now two weeks into "Lunch for Life" and things are as busy as ever. Donations are continuing to flow in and the media is starting to pick up on several stories throughout America. We still have not reached our goal and it is time to put things into fast forward. I ask that if you have not visited the website at http://www.lunchforlife.org that you please do so now and if you have not told your friends and helped spread the message it is time to do that today. We can create change in the world of childhood cancer but it takes all of us working together. So, please, if you have not done so yet, help us change the world today, right now, this minute. Help spread the word. Our purpose is yearning for answers.
5:20 AM 9/16/2005
Sydney slowed down a little bit at school yesterday. It is clear that she is not completely herself. She slept well during her afternoon nap. The nap clearly rejuvenated her and she spent most of the evening in a high energy whirlwind of trouble making. Although we still have many battles with attitude and behavior she seems to be much better. It is clear that she has reached a stage of declaring her independence and it remains a struggle to get her to do many of the things that we ask her to do but, I can tell that school has had a positive impact on her. She is far more inclined to listen to her parents but we still haven't reached the parental Mecca of obedience. It is an interesting challenge. I never really know whether I am dealing with an effect of treatment or just a normal 3 year old behavior and it is constantly in the back of my mind. I still feel a certain amount of guilt each time I punish her or use a stern voice to correct her. Night time is the toughest. On some nights she goes right to sleep but many times she will continually beckon for us to come back in her room. She is clearly manipulating us. We have developed a routine for going to bed. We have learned exactly what she will need for any night of sleep. She needs the closet light on and the door cracked open. She needs at least 3 blankets. She needs a stuffed kitty to sleep with. She needs at least 3 books in her bed. She needs 1 cup of milk. She needs 10 kisses under her pillow. Finally, she needs us to sprits her room with bad dream spray (an aerosol can of air freshener which has been decorated with a hot pink ribbon to signify its magical ability). If any of these items are missing she will yell until we come back into the room. On some occasions she will even throw a blanket out of her crib and onto the floor. She knows that we will only come in the room if she is missing one of her needed bedtime items or if she is in pain. Otherwise we become firm. I will open up the top of her door (her bedroom has a butler door which is quite handy) and say "Sydney, it is time to go to bed." She will say "Daddy, I want you." I will reply, "What do you want Sydney?" She will exclaim, "I want you." This moment sends pain through my heart and there is not a night that goes by that I do not have flashbacks of what she has been through. I tell her I love her very much but that it is time to go to bed and I close the door. Usually she will then start calling for Mommy. I think these moments would be far easier had she never been on the brink of life and death. It kills me to deny her a snuggle or a hug but I also know that if I don't put a stop to it she will stay up indefinitely. I feel like a cruel bastard. I know that I am doing the right thing but that does not ease the guilt or remove the memory of the nights that she was in the hospital. I question my actions. I just want to hold her and tell her that I love her and that I am so completely blessed that she is in my life but instead I just sternly tell her to go to sleep. It does not feel good and yet it is something I know I must do. Parenting is hard, whether you have a purpose or not.
4:40 AM 9/20/2004
To Sydney, every sport is called "basegolf." It is actually pretty sweet. Every time she sees someone playing golf on TV or in a picture she will say "They are playing basegolf - just like daddy!" In the same sense, if she sees any sport on TV, she says "Hey, daddy yook(look), they are playing basegolf." She has never actually seen daddy playing golf but for some reason it has been ingrained in her head and she becomes very excited whenever she sees something about golf. To broaden her horizons we have started Sydney in sports. As of Friday she was officially participating in a soccer league. The good news is that she can now differentiate soccer from basegolf. When asked about her first practice Sydney gave me quite a dissertation. I asked her how she plays soccer and she told me, "You have to run, run, run and then you kick the ball into the net and everyone yells yeah Sydney, YEAH Sydney!" She was obviously very proud of her newly found hobby and spent quite a bit of time before going to bed telling me all about it. I think we have developed a three year old soccer junky.
Continuing the sports theme, NFL football is back. I don't require much during football season, in fact, I only require that I get to watch my favorite team once a week. Good or bad, for better or worse, I am a Dallas Cowboy fan. I always have been and I always will be. I like them when they are good and I also like them when they are bad. They are my team. So, when football season starts, all I ask for is a couple of hours to watch the game. I like it when the whole family sits together in the den and although the kids and Lynley are usually up to something else we are always together in the room sharing a moment of great football or, in the case of the Cowboys this year, superiorly mediocre football. Lynley decided to have a small football watching get together this weekend. My mother and Aunt Jenny were invited. I should have known by the guest list that this was not going to be about football, although they clearly called it a "Dallas Cowboy Watching Party." The next thing I knew I was watching two kids as they sat outside and drank wine and talked in "girl speak." It did not take me long to learn that this was not a football watching party but rather a Tupperware party in disguise. I had been duped. But that was okay, I did not give up. I sat "Dudely" on my lap and Sydney on the couch and we watched some football. Okay, maybe it was mostly not watching football and more entertaining the kids but we did it together despite the women's evil intent to try and turn a football party into something girly. I did not get to watch much football as much of the time was spent potty training Sydney, changing diapers, bathing imaginary kitties, etc. but at least the three of us knew why we were there and we were committed to upholding the manly tradition of watching football. I really didn't get to see much of the second half. I had to cook. Yes, I said it. You might as well stamp sucker on my forehead. I would like to point out that while I was cooking the women did not even watch the game. The Cowboys almost lost due to the lack of couch coaching during the third and fourth quarters. So, yes. I was taken. The women folk tricked me and tried to girlyfy the sacred tradition of Cowboy football watching but, I am on to them. I know what is going on and I will get even. Now I have a purpose and a half.
5:20 AM 11/21/2004
We have received our official second and third opinions regarding Sydney's hearing or lack there of. Getting different opinions was actually pretty interesting. Although we met with several different types of doctors it was interesting to hear there answers. They did reach consensus. Everyone thinks Sydney needs hearing aids but, interestingly enough, they all had different reasons which was based on their particular backgrounds and specialties. Some of our doctors were interested in speech development specifically, some of our doctors were interested in her hearing from an educational standpoint, and our original team was interested from a general perspective. Although I wish that they would have found that Sydney did not need hearing aids, I think the time spent getting second and third opinions was very worthwhile and informative. To Lynley and I she was a borderline case. In fact, to most everyone she was borderline. But, it was the collaboration of these individuals which not only educated us on Sydney's hearing needs but made us more comfortable with our decision. We still do not like the fact that Sydney will be faced with the obstacle of this obvious sign of disability but we now understand the need and that somehow makes it easier for me to swallow. I am now starting to think about it in a positive light. I am still trying to discover how we can use this hurdle in her life as leverage to make her a better person. I kind of view it like this. During the Olympics there was a hurdle race where the runners had to jump a hurdle which was immediately followed by a pool of water. Some runners would jump the hurdle and land in the water. Some runners would use the hurdle as a stepping stool to jump over the water, and others would simply fall into the water. In this scenario, I view Sydney's hearing as the hurdle and the pool of water as life's potential problems. She can let her hearing bother her and just fall down and give up, tripping up on the fact that she has a disability and be swallowed up by all of life's potential problems. Or, she can try and avoid her hearing issues and just try to accomplish everything in her world, but coming crashing down into life's problems because she has not accepted who she is. Or, like the winners of the race, she can use her hearing loss to her advantage to help her soar above life's potential problems. This sounds great in theory and it makes sense to me. But now I have to figure out how to put my words into action. I have to figure out how to teach her to use this challenge in her life to her advantage. Nobody ever said my purpose was going to be easy.
HEARING AIDS 101
5:25 AM 9/22/2004
We are still in the process of trying to decide which hearing aids to get for Sydney and I found myself once again in a position of not knowing enough about it so I have spent much of the last few weeks learning about hearing aids. Unfortunately, the vast majority of kiddos with stage IV neuroblastoma who endure the protocol that we were on will face some form of hearing loss. With that being said many parents will stand in our shoes so I thought it would be a good idea to pass on what we have learned. I have said it before. We are lucky because our insurance is pretty good overall but, we have found that when it comes to hearing, financial support and insurance coverage is slim to nil. This seems to be the case with most insurance companies. Our insurance will cover the costs up to $500.00 each year every three years. That would be fine and dandy if we were talking about "walkie-talkies" but unfortunately it does not even come close to covering our costs. Sydney's hearing aids will cost somewhere between $1500.00 to $3000.00 per ear. That cost is fairly typical for average to above average hearing aid that will meet her needs.
There appear to be two key features of hearing aids which help to explain the cost difference. These are "programs" and "bands (or channels)". "Programs" basically mean preset frequency responses (and sometimes microphone responses) in the way that different types of incoming sound is processed.
For example, one program may be for basic everyday listening in quiet environments, which would use a microphone which amplifies sound from all directions equally (basically a circle around Sydney's head.)
Another program may be set for use in noisy backgrounds. The microphone response in this program would be set to amplify sounds from the front more than sounds from the side or back. Basically, the dominant microphone follows Sydney's eyes and preferentially amplifies sounds in front of her. The frequency response in this program would also filter out low frequency sounds even more aggressively than in the "every day program" as most of the background noise that interferes with speech perception occurs in that range. This program might be used in situations such as a restaurant, church, etc.
A third program might be set for use on the telephone. These aids have the capability of shutting the microphones off and directly picking up the electromagnetic signal from the telephone via a "telecoil" inside the hearing aid. This "telecoil" program is also sometimes used with FM systems in school settings.
A fourth program may be used for "specialty" frequency responses, i.e. listening to music. This program may be disabled by our computer until she gets older. This 4th program is considered "bonus" at this point, and while it is a nice option, it would not be a disservice to Sydney if we chose an aid with only three programs.
Now, I will attempt to address frequency bands. Because the hearing aids that were recommended are very flexible and are designed to meet the needs of individuals with all types and configurations of hearing loss, the frequency width of the bands is pre-set. That means that we cannot take all 15 bands and devote them to the high frequency portion of the audiogram. If you divide the "Audiogram of Familiar Sounds" equally into 15 columns, that will more or less match the frequency bands of the hearing aid. (You can do the same thing to understand what a hearing aid with any number of bands will do -- A 2-band hearing aid splits the audiogram in half, a 4 band splits it in quarters, etc.) We are able to shape each band individually.
For example, if we increase the gain (volume) in the high frequency band of a two band hearing aid, all the frequencies on the upper frequency half of the audiogram will be made at least somewhat louder. However, if we increase the gain in one channel of a 15 channel hearing aid, only the sounds in that 1/15th of the audiogram will be made louder, allowing us to more precisely shape the output of the hearing aid to Sydney's exact hearing loss configuration.
In general, the higher the number of bands, the more precisely we can manipulate the output of the hearing aid. This is true only to a certain point...we certainly don't need (or have available!) 40 bands to accurately amplify a hearing loss. We can do a good job with 2 bands, an excellent job with four bands, and an even better job with 15 bands.
So there you have it. Hearing Aids 101. Who would have thought my purpose would be so informative.
6:10 AM 9/24/2004
Yes, I have missed another valuable day in my diary. It has been a busy week for all. Mimi (Sydney's grandmother, Lynley's mom, and my dear beloved mother-in-law) is in town this week for a visit and, on top of that, we are having a garage sale this weekend, putting several "Lunch for Life" mailers together, ordering hearing aids, and work has just got me buried up to my eyeballs. I guess I should just get used to never having any time. The lack there of still shocks me almost everyday. It has nothing to do with neuroblastoma and, although I still think about it everyday, my life is completely normal and average -- just plain busy.
Sydney is doing wonderfully and the whole potty training thing is going as planned. On Wednesday Lynley dropped Sydney at school for the first time without diapers. She spent the entire day in big girl panties. Okay, she didn't spend the entire day in the same pair of big girl underwear but she did spend the entire day without a diaper. She is doing very well at home and unless she is sleeping she has been completely diaperless. We have sporadic accidents but, for the most part, she is transitioning very well. I am extremely proud of her.
Today will be, yet another day of Dungan household normalcy in overdrive. Sydney will be going to school and playing in her soccer league. Graham will be spending the majority of his day at home with Martha, Mimi, and DeeDee demanding to be fed. Lynley has a busy day in front of her at work with an office move and I will be racing between home and work getting ready for both the garage sale and a server migration at work. Isn't life exciting - and normal. Even with all of this, I have not forgot my purpose.
5:30 AM 9/27/2004
This weekend we had Sydney tested by a speech therapist. This was an exciting test for me because it is the first time that her development has been evaluated post transplant. Sydney sat through about an hour of testing to assess where she stood in the world of development. I got to sit in the room next to them and listen in as they performed the tests. I must say it was rather funny listening to the therapist work with Sydney. You just never know how Sydney is going to react to these tests. I had to laugh many times as I heard Sydney chattering in the room beside me. It is one thing to have a conversation with Sydney but it is quite another to sit idly by and listen to her talk to others. It brings back great memories of watching the old "candid camera" show when Mr. Funt would interview little kids. Kids truly say the strangest things. The therapist had some great success. I must say she was talented. It did not take her long to figure out what makes Sydney tick. And it did not take long before both the therapist and Sydney were actually doing the assessment in "kitty." Whenever the therapist would like Sydney to answer a question she would ask Sydney to explain it to a stuffed kitty that she had nearby. Sydney thought it was great fun. I think she thought it was school for her little stuffed kitty and she was more than happy to help.
Sydney did very well on the tests. It was an assessment of where she stands developmentally. They looked at her in three specific areas. Now, bear with me, I don't have the report in hand to go off of but this is what I remember from the conversation. They first assessed what Sydney understood. She did very well in this area and performed at about a four year old level. That was quite a shock to us. With all that she has been through we expected her to perform more closely to her age group. She is only three years and three months old. Secondly, they tested her ability to communicate ideas and apply the information that the therapist had given her. She really performed well in this section scoring above that of a four year old child. Lastly, they tested her speech. She scored near her age group. The therapist was concerned because of how well she did in the other areas of the tests. The theory is that Sydney's speech development has probably stagnated for three to six months because of her ability to hear certain sounds. This made it even more critical for her to get hearing aids. She is not behind now but the belief is that if we don't get her into hearing aids soon she will start to fall behind in her language skills. Furthermore, she is particularly at risk because of the fact that she is clever and particularly verbal. The fear is that she will become frustrated by her inability to communicate her ideas to others and isolate herself. Many kids in her position just simply stop talking because they become so frustrated. The key here is to get her hearing aids quickly and to keep her involved in activities that will challenge her. She needs to be doing activities that are at her level of development and we need to focus heavily on her speech. It is likely that once we get the hearing aids we will have her meet regularly with a speech therapist. Again, the concern is not that she is behind. She is doing very well but because of the fact that her speech skills are not keeping up with her cognitive and recognition skills it can cause some significant problems down the road. We have now heard from several sources that, particularly in Sydney's case, we need to continue to challenge her intellectually but, more importantly, we have to focus on her speech and we have to do it right now. We need to make sure her environment reflects her level of development and not her language skills. In short, we need to focus on getting her speech up to par with her level of understanding.
There is a ton more to talk about including an interesting analysis of her "kittyness" but, unfortunately, there is simply not enough time right now. Perhaps, tomorrow. Until then, it is time to chat up my purpose.
5:20 AM 9/28/2004
There is no doubt that Sydney is still very much a kitty. After sitting in the room next to her and listening to the banter between she and the therapist it became even more obvious. Sydney uses "kittyness" as a protection and coping mechanism. During her evaluation she would start out as a little girl but as the questions became harder I would hear her words quickly retreat into meows. At the time, I did not realize that the questions were necessarily getting harder but I certainly realized that when she did not know the answer she would start acting like a kitty. I always realized that she exuded kittyness whenever she was worried or when she was uncomfortable but nothing made the connection more evident than the time I spent listening to her being evaluated. It was like night and day. She would start off barking out answers. As the testing became more difficult her voice would start to fade in volume. I looked through the window into the other room as she became more quiet and I could see other signs of her ability to try and grasp the answers. She would answer but in a way that would seek reassurance. In other words she would try to cheat. For example, if the therapist asked her to identify the pictures of things that she could eat, Sydney would pick them out individually and wait for a reaction as to its accuracy before she went onto the next one. If she felt like the therapist encouraged her she would continue, if not, she would retreat and refuse to answer the next part of the question in "human." She would begin to paw at the pictures and respond with meows whenever the therapist asked her a question. When they got to the questions that were well beyond Sydney's comprehension Sydney would retreat into a full state of kittyness and refuse to even acknowledge the therapist. Then, just as she would ask a question that Sydney knew the answer to, she would return to her "little girl" form. It was entirely interesting to watch. I was amazed at how clear "situation kitty" had become.
So what does all of this mean? Well, that is exactly the same question I asked of the therapist. Is it normal? No, not necessarily! Is it healthy? Yes, very. Three year olds simply do not have the coping mechanisms that we as adults and older children do. Some kids act out in stressful situations, some retreat, and some, apparently, become kitties. It is becoming far more evident that I will not be able to blame her "kittyness" on the fact that her kitty cat cells avoided the toxic effect of the chemotherapy and were allowed to proliferate. But, it did have to do with chemotherapy. In fact, it probably had to do with her entire treatment. Kitties make her happy and this is the method that she found to bring her happiness and pleasure in difficult situations. If you ask me, she is pretty clever. She found a way to make some positive come out of something negative. Perhaps her glass is half full. My purpose is finding the good in something horribly bad. My purpose is about finding happiness and answers in a world where there are far to few.
THOSE DUNGANS - THEY'RE BACK
Yesterday, Lynley and I visited Sydney's school to meet with the principal. As a parent, it was kind of nice to meet with the principal when it was not attributed to something bad. I remember meeting with my principals when I was a child and I do not remember any of those meetings to be fun. Well, this one was. The purpose of our meeting was to reassess. It has been over a month now that Sydney has been in school. During that time we have learned a lot about her hearing and her development. We thought it would be a good idea to meet with them to discuss, not only what we had learned, but about how Sydney was adjusting. Remember, this was Sydney's first attempt at socialization with children her own age. We have discovered that Sydney is doing well. She has become comfortable with the teachers, her classmates, and the new environment. We have discovered a few new issues. First, Sydney is the oldest in her class. At the beginning of school it was decided that we would put her in a class that was about 6 months behind her. In other words, she is in a class of 2.5 to 3 year olds. Sydney is 3 years and 3 months old. There are several reasons for this. First, she had not been potty trained which was a requirement for the next grade. Secondly, knowing that she was behind socially (after all, she had never really been with kids her own age) we wanted to give her the best opportunity to fit in. Third, the class size was small. There are only 6 kids in her class compared to the next "grade" which had 10 little kiddos. This was all fine and dandy until we received the report from the speech therapist which stated "Placement in a language-rich, pre-academic environment with age-peers may also assist in supporting Sydney’s speech and language development." Knowing that Sydney was in a class with younger kids and knowing that she was operating at a four year old level receptively and expressively we wanted to reassess her placement and develop a plan with her teachers to make sure we were all addressing her needs. After a thorough discussion, I think we all decided that Sydney was in the best possible place that she could be. She is still underdeveloped socially and the class that she is in currently would be a better source of development and training than the more aggressive class that includes kids of her own age. Apparently, Sydney still shies away from this group and becomes uncomfortable at their youthful exuberance. She is far more comfortable with the size and demeanor of the children in her class. Additionally, the group of children in her class appear to be pretty clever in their own right and the class has been performing some challenging tasks not necessarily typical for their age range. This makes Lynley and I feel better as we now understand that placement in this class should not hinder her receptively or expressively. The remainder of our discussions centered around her hearing aides. We all understand that this will come with some behavioral issues and we tried to come up with a plan. In the end, I think we were all quite comfortable with our decisions. We will, once again, reassess in November, but for now we are extremely pleased with her school and her teachers. It was time well spent for us, but, they may be thinking differently. Those Dungans sure can be high maintenance. After all, they have a purpose.
6:15 AM 9/30/2004
Sydney spent her first full day in school yesterday. At our meeting the day before the administrator suggested that we try to start leaving Sydney for the full day. I must admit we only left her for half days on Mondays, Wednesdays, and Fridays to suit our own needs. We wanted to spend the time with her ourselves and we are kind of selfish that way. However, in developing a plan that was best for Sydney's growth and maturity we heeded their advice and gave it a shot. When Lynley dropped Sydney off she was adamant about not staying through nap time and part of the afternoon but, as the morning wore on, her decision apparently changed and Sydney happily spent the rest of the day at school. Surprisingly she even slept for almost two full hours during nap time. At about 3:30 PM Graham and I hopped in the car and went to pick her up. Sydney was extremely happy to see me but, even happier to see Graham dawn the halls of her school. Sydney introduced Graham to her classmates and explained the whole concept of having a little brother to them. It was actually pretty funny. Kids say the strangest things. If I remember the introduction correctly it was something like "This is Graham. He is my little brother. He is mine!" and she followed it up with a big "smooshful" hug that sent Graham into "giggle land." On the drive home she told me all about her day and she spent most of the evening being happy - obstinate but happy. All in all, it was a great day for her and I am glad that she adjusted to the full day so well. I am hoping that giving her this opportunity is benefiting her more than it is punishing me for not getting to spend as much time with her. I guess I have to let her spread her wings a little. Apparently, she has a purpose too.
Until the next time......