Answers...and more Questions...
Today we got the results from Ellie's bone marrow biopsies. There is still neuroblastoma present in Ellie's bone marrow, but apparently the cells are maturing. Contrary to how this sounds, it is a good thing. Cancer cells are very immature, so signs of maturation mean positive change. We are thankful for that much, as I was truly not surprised to hear that there is still disease present. We have been seeing enough signs lately to indicate that the cancer is still at work in Ellie's body. Tomorrow we will take Ellie in to the hospital for CT scans of her head to check on the tumor there. It would be lengthy to describe all of the reasons for our concerns, but in a nutshell: Ellie has lately had some pain in her legs (similar to, but not as severe as the pain before we discovered the cancer) and there is a good deal of pressure in her nose. One night during this past week (when I thought she was developing a cold) Ellie blew her nose and something came out. Sorry if this sounds gross, but it looked different from anything I had ever seen - the best way to describe it is "tissue". Ellie has also had some mental/emotional changes lately similar to those before her diagnosis. I was begining to suspect that the cancer was growing, but the results of the bone marrows is a little encouraging to me. Hopefully after tomorrow we will have a better idea of what is going on in Ellie's body. After the CT scans, we have an appointment with Ellie's doctor to check on her chickenpox and determine when the third course of chemo will start. I will try to get an update out to you all as soon as I know more information.
I have been kind of waiting for the best opportunity to fill everyone in on what we have come to realize is the most accurate prognosis for Ellie. When we first heard that she had neuroblastoma, we thought that she had about a 50% chance of survival. We have later come to learn that that is the average for children diagnosed with neuroblastoma, but that it is more complicated than that. Most of the children diagnosed are very young, and the younger the child, the better their chances are. Children under 2 years old have the best prognosis; next are children between 2 and 5 years old. There are MUCH fewer children over 5 even diagnosed with neuroblastoma, and their chances of survival are somewhere between 20% and 30%. Some children have a type of neuroblastoma that is resistent to treatment and can even grow during chemo. Those children have about a 10% chance of survival. We do not know if Ellie falls into that catagory. A big problem with this disease is that it is tricky and adaptable and has a high rate of relapse. In Ellie's particular case, the cancer has metastesized to quite a few bones throughout her body - I don't have an exact count, but it is in the neighborhood of 20. I wanted to explain this because I didn't want it to come as a complete shock to everyone if things do not always go well, or as expected. We have been gradually absorbing this information over the past couple of months, and I realized that I hadn't been sharing all that we were learning. I've not been intentionally holding back, but it has been a very overwhelming realization to come to that the "odds" truly are against us.
This being said, I do know that if, say 25% of children like Ellie make it, then that means that some DO make it. I also know that God cannot be factored into the percentages. We have by no means lost hope. We have every reason to fight and persist and stay hopeful and encouraged simply because we have a precious LIVING little girl who wants to continue living. And now that being said...I also know that there are no guarantees. I do not have a deep down knowledge or belief that Ellie is going to make it - I simply konw that God truly is enough for us whether she lives or whether she dies, and I know that no matter what...God is GOOD. And I know that the worthiness of a life is not measured in the quantity of years a person lives. My grandest dream for my children is that their lives would somehow bring glory to God. If God accomplishes that in Ellie in her young life, then her life will truly be as "full" as I could ever hope for. I cannot hold her in clenched hands, because I truly do not hold her at all. Ellie's life - body and soul are already held tenderly in the hands of God. I cannot ask for anything more than that - all I can do is wait...and trust. That doesn't mean that it doesn't hurt - I have cried so many tears because I want to keep Ellie with us - but it does mean that my heart is at peace...the kind that truly passes all understanding. I am so thankful to God that He has done this work in my heart, for it truly is His and not my own.
I pray that the God of all comfort will be with you all tonight, for I know that you have taken Ellie into your hearts and lives as well. Some of the words of another Twila Paris song just popped into my head: "Every heart that is breaking tonight is the heart of a child that He holds in his sight. Oh how He longs, to hold in his arms, every heart that is breaking tonight."