Thursday, June 5, 2008

Our little buddy Hayden

Over the years since Sydney's diagnosis nothing has come to shock me. As I have grown closer, watched the beast through the research, and seen it in so many children; I have come to the point that absolutely nothing surprises me anymore. I have seen it nearly everywhere do nearly everything. I have seen identical disease in nearly identical children treated with identical drugs melt away one tumor in one child while ravaging the body of another. Nothing shocks me. I have come to expect both the best and the worst. I have learned to guard my statements and I know exactly what not to say. I have seen too much. It hurts when any child is diagnosed. I hate it but I know that it happens. When I can, I focus on helping the family and the child get through the process. That is something that I can do and, honestly, it is my favorite part of what I am able to do for the CNCF. Although I am not on autopilot because every child and family is different, it is something that I know intimately. I have been there hundreds of times. I know what I can do to help and I know what I can not do. There are no surprises.

I tell you all of this because Hayden's diagnosis has broken everyone of these rules. If I am being honest, it has rocked me to my very core. After a day of trying to process this I still am coming up blank. I can not believe that it has happening. It just won't sink in. It won't digest. I can't believe it.

Yesterday morning when I received the email from Hayden's family I was extremely skeptical. I mean, come on, what are the odds. Between Sydney's class and Hayden's in the last two years at Arborlawn their can't have been 50 kids. In fact, since Sydney started there at the age of 3 I can't imagine that they have had more than 150 different kiddos in the school. What are the odds of 2 of them being diagnosed with neuroblastoma? Don't get me wrong? I don't think there is a link. I don't think there is anything in the water. But still, I can't get my brain to wrap around it. It is for all of these reasons that I thought that there had to be some mistake. I almost did not write about in my diary. They had to be wrong. It isn't possible, much less fathomable.

After I dropped off the kiddos at school yesterday morning I ran by Cook's. At first I was relieved. His name was not on the board. What I did not realize at that moment was that he was indeed there, just registered under his step father's last name. Sure enough, as I walked down the hall there was that little boy that played with Graham on a daily basis. He looked so healthy. In fact, had he not been in one of those little blue hospital gowns with rockets and planets on it I would have expected him to be going to school. I would have expected him to be playing with Graham. Ironically, this week there were only two kiddos expected in Graham's class - Graham and Hayden. It gets even stranger when you realize that Sydney's very best friend through treatment was Hayden's step sister.

Regardless, it is entirely worthless to continue to debate why all of this won't sink into my head and how utterly unlikely this is. The point is that there is another very adorable little boy that looks to have entered the nb world. Hayden has been having issues with his tummy for quite some time. In fact, I can remember back to October of last year when Hayden was having tummy issues. His parents have been diligent at taking him back and forth from the doctor. It was in March when things really started to get worse. Like so many of the other children with neuroblastoma the symptoms mimicked other things, masking the ultimate diagnosis. It was not until they finally got him in for an ultrasound the other day that the large abdominal tumor became evident. The day since the discovery has been jam packed with tests, pokes and prods. Yesterday brought an echocardiogram, tumor biopsy, port placement, and bone marrow aspirate/bone biopsy. At this point Dr. Eames is 99% sure that it is neuroblastoma but it will take results from yesterday's biopsy to seal the diagnosis. In the days to come there will be a CT scan, an MIBG, and more I am sure. So far there is a good bit of news that has come out of all of this and this is what the family and little Hayden need from us right now. Fortunately, they have not been able to discover any metastasis in Hayden's body. His lymph nodes look clear and he is not showing any other sign of additional tumors. Yesterday he had a bone marrow aspirate and biopsy and today he will have some additional tests to rule in or out any other evidence of disease. This is critical for Hayden and why they need our prayers. These are the items that will define his staging and ultimately what the next few years will be like for Hayden. The difference in what they find are extremely significant. I would provide numbers but I don't know if the family is ready for that so you are just going to have to trust me when I tell you that the results are critical. It is the difference between intermediate and high risk disease. We need to pray that:

1. They do not find any disease in Hayden's bone marrow.
2. They do not find any disease on his bones or anywhere else in his body.
3. The testing on the tumor does not show NMYC amplification and the results come back with favorable histology and biology.

Please say some extra prayers for Hayden this morning.

Today we have new purpose.


Anonymous said...

Praying for good news for Hayden and family.
love, Ellen

laulausmamma said...

Sending positive vibes Hayden's way. When my Katie was dx with NB 23 years ago she was Stage 4S - dumb bell tumor on the spine through to the chest and BM involvement. She had 11 mos of chemo and has been cancer free ever since. Until the past couple of years reading this blog I was never aware how "lucky" she is. Hoping Hayden fares the same!


Vickie said...


I can identify completely with what you have written. I work in a department with 41 total faculty, including adjuncts. Half of them have either grown children or no children. Two years after Erin was diagnosed, one of my colleagues had a son diagnosed with NB. Twenty people in the department with youngish children. Two with NB. I still don't believe it.


Anonymous said...

Our son, was diagnosed with stage 4 NB at 13 mo, is currently in remission (or free of cancer) since Dr.s don't like to use the word remission. My husband just found out a co-worker 50 ft away from him has a daughter diagnosed with NB. Makes me wonder if the 650 new cases a year is an accurate number. All my best to the many families fighting this horrific disease.

themacdonnells said...

Man, I'm sorry to hear that. We'll keep up prayers for their family and you know, we'll do whatever we need to do for their support.

Jeeze. NB sucks so bad!
heather and lukas