When your child has a life threatening disease there are two words you never want to hear in regards to test results, “I’m sorry.” Who knew two words that have always brought comfort and warmth could suddenly instill fear. Those two words finally brought me to my breaking point this week as I heard them over and over again in regards to pathology reports we got back on the tumor. 90% of the cancer cells were still alive. That means that the chemo didn’t actually kill most of the cancer, it just shrank it. In neuroblastoma that information is not a predictor of how things will continue to go, but it wasn’t what our team was expecting. A report that said the cancer was almost completely dead would have, in the words of our doctor, made everyone feel warm and fuzzy. Instead we got results that made people say, “I’m sorry. That’s not what we had hoped.”
Our doctor (the expert) still believes things will continue as planned for Izzy. He still says that all the important stuff you need to see at this point to keep moving towards a cure we have seen. A clear MIBG scan and practically 100% of the primary mass removed. He’s still hopeful. Atleast someone is. I managed to lose my hope in a puddle of tears as I wept on our bathroom floor one day This past week. “Please save her, Lord,” I pleaded over and over again in desperation. “Please.”
I don’t walk around everyday in the reality that this is life and death. I see a child who is suffering and my heart breaks, but I don’t think about the unknown possibilities of tomorrow. I can’t live in that reality everyday but this week I got a brutal reminder of it. 35% of Stage IV Neuroblastoma patients find a cure. If they can make it to cell the stem cell transplant those odds jump to 65%. We have to be cancer free to make it to the transplant. In six weeks we’ll have more tests to see where we are.
Most days along this journey I feel like we’re climbing up a mountain of gravel on our hands and knees. The gravel just continues to slide underneath us trying to take us down and steal every inch of victory we’ve claimed. That’s the thing about climbing up a mountain of gravel. There’s nothing sturdy enough to hold onto, no ground firm enough to regain your grip. There is nothing, nothing but the grace of God that can help us find our way to the top. I don’t know why we’re on this mountain. I’d give anything in my life to have another mountain, any mountain but this one. But this is the mountain He has allowed for us. So I am left with two choices each morning. I can wake up with the new mercy He has deposited in me and keep climbing or I can roll over and go back to bed. God forbid I ever go back to bed. God forbid I ever stop climbing. I will climb this mountain until He reaches down from the heavens to pick us up ever so gently, only to set us down on the other side.
Yesterday Izzy began her fifth round of chemo. There was no break after surgery, no quick trip home, we need to keep on schedule. Last night she woke up every twenty minutes or so gagging on vomit in her sleep. She would sit up momentarily and then collapse on my lap. She was exhausted from the anti-nause meds. As she lay on my lap and I listened to her breathing I was reminded of simpler times. Times when I had rocked her in my arms and felt her breathing just the same. Times when Tylenol and Motrin could cure her ailments and I could keep her safe. But even that was just an illusion. I know now that even then the cells were there. There was a lethal weapon sitting idle deep within her aiting to explode and destroy our lives. And all the while I rocked her to sleep singing lullabys none the wiser. Please pray that it will die, this deadly weapon that keeps trying to steal from us. 10% of it dead is not enough. All of it needs to die. Either it dies or…. Pray with me so I don’t ever have to complete that sentence. I believe my daughter has a destiny that goes beyond Neuroblastoma. Join me in asking for it.