Maddy's First Chrsitmas is in the books

Christmas was wonderful! We had lots of family around and Madelyn had a blast. She's developing so well. She is very close to rolling over. It should not be more than a week now. She's flinging the leg for momentum and has a very determined look on her face.



We removed the bandage from her surgical wound over her liver. I have seen lots of stuff as a medic in the army and working in ICU departments, but for a closed wound this one bothered me just a little. The edges are a little jagged, but that is probably due more to the way its healing. It is larger than I expected, but still not bad. I just think what we would be looking at had they chosen to operate on her chest, and feel relieved with what we actually did.

Sheila and I talked last night about Madelyn's condition. Sheila stated that when she looks at Madelyn, she doesn't see a "sick" child. I told her, however, that I do. It's odd to me how I look at her. I see her almost at a cellular level. There are things in her body that aren't supposed to be there. Her eye is really drooping at times, and you can't help but wonder if the eye is getting worse or if the sympathetic nerve pathway will ever be the same. If I haven't explained how her eye is related to her condition, let me do that now.

The tumor in Madelyn's chest started from her sympathetic nerve chain in her chest. It IS the nerve, not a tumor near is that presses on it. The sympathetic nervous system is the part of your nervous system that controls things you don't think about. When you open your eyes, you don't think about opening them equally. When you look at a bright light, you don't think to constrict you pupils to allow less light in. When its hot, you don't think about sweating. The sympathetic innervation (nerve connectivity) to her left eye and cheek have been interrupted by the nerve growing to become a tumor. If these tumors stop growing, there is no guarantee that the chain will return to 100% function. When the doctors originally said they were going in to her chest to possibly resect (cut out) the tumor in her chest, if they had done this, the nerve would be gone and it would never be right again. Right now we don't know how it will turn out even if the neuroblastomas stop growing and change to ganglioneuroblastomas or ganglioneuromas.

It seems petty to think about her having normal eye function when her life is technically still in danger, but you want your baby to be as normal as possible. When I think about her growing up and beginning her socialization, I worry that anything not seen as "normal" will cause her problems. Children can be cruel, and I have read where adults are still dealing with the psychological impact of having a droopy eye. Within 10 minutes, we heard conflicting statements from two surgeons on whether she would grow out of this, and the surgeons are partners in practice. Its not my research. As I said, it seems petty but what else can I do?

Right now, we are waiting for the results of the genetic analysis from California. The doctors don't expect anything back before next week. We may have an MIBG scan next week. In this test, they would inject Madelyn with a radioactive isotope of Iodine that usually bonds well to neuroblastomas. The purpose of the test is pretty much to see how well MIBG works on her tumors and how effective this will be as a future diagnostic test.

It scares me to death to think that right now we are just waiting and this thing could be growing. Again, I think about this at a cellular level. Are there more neuroblast cells today than yesterday? Are there less? Are the cells maturing as we hope? We aren't in a hospital, no one is sticking a needle in my baby, but part of me felt better when we were actively doing things versus waiting. I do trust our doctors, though, and I have faith she'll be fine but the waiting is torture.

Thanks to all of you for taking the time to visit the blog and for your continued prayers and well wishes. We love you all and you continue to inspire us with your kind words and outporing of love. The best part of our day is when Sheila gets a text message on her phone that a new message has been posted. We read them aloud to each other, often looking at each other and saying, "Who is that?" because you have told so many people about Madelyn and people we have never met before are stopping by to wish Madelyn well. I can be pretty cynical, but this is amazing that people still care.

The Bell Family