These days at home have been surreal even though we have had to drive back to Cincinnati six times in the past ten days. It is almost as if life has paused for us and we have been granted permission to enjoy it moment by moment. At the end of the day we got all of the test results we were looking for. Her MRI, her MIBG and her bone marrow were all free from disease. By the grace of God Izzy has remained No Evidence of Disease. It is no small victory and for that I am eternally grateful. In addition, she met all the criteria for antibody therapy as well, which will be our next course of treatment beginning in just a few weeks. That alone is it’s own victory considering the huge setback we had with TMA. The TMA gave her pulmonary hypertension and kidney dysfunction for a time. Her kidney function is perfect now and her pulmonary hypertension is only borderline. There are no words to describe the joy and gratitude in my heart. I can do nothing but fall to my knees in awe of the merciful God who has delivered us so far.
Neuroblastoma is far more than just a battle, it is a war. As I sat in our appointment Friday talking with our Oncologist I was reminded of this reality. Izzy was dancing and twirling with the other doctor in the room. We were all so happy to be transferred back from the BMT team to Oncology. I so desperately wanted our primary doctor to jump for joy at our great news but the truth is, he knows better than anyone what a nasty disease this is. It can, and half the time does, turn in the blink of an eye. I wanted him to say that since she made it through both Induction and Consolidation NED that our odds were remarkable. He did not.
He spoke trying his best to be honest but not disheartening, “I think there is some study out there that backs up what you’re saying. But the truth is we just don’t know. Whether we’re talking about 45% or 55% the number is so close to the same.”
“Can’t you just sign a document promising me she will be okay forever?” I laughed, having asked the same thing many times before. He laughed and said he could, having quite a sense of humor himself. But then the room got quiet and I watched the other doctor study his face for what he would say next.
“Molly, you’re going to have to get used to living in the uncertainty that we don’t know what will happen.” My heart sank. What was happening? This was supposed to be a happy day. I continued with my case for joy, “But antibody increases your chances by twenty percent. With antibody we should get up to seventy percent!”
“We originally thought that. But now there are unpublished studies saying that those kids in the first study have all started relapsing at close to the same rate as the other kids. The number is still a little better but not a full twenty.” I could feel my eyes filling with tears. I would not cry. If I cried his tone would change and he would start talking to me like he was my father. He would give me a hug and tell me there was always hope. ‘Easy for him to say,’ I would think.
“Molly, you know that these are just numbers and she is not a number. I mean all that being said, look at her. She looks amazing.” Dang it. He knew I wanted to cry. We soon moved on from statistics to something else and before I knew it I was back in the car on the all too familiar drive home. I couldn’t stop picturing a coin. It was like someone tossed a coin in the air and said ‘heads you win, tails you lose.’ Is this what I really believe? That this war, that Izzy’s life might have well been decided like this? I knew better but I could not shake the image of the coin.
No one ever said life would be fair. While we all claim to know this we still walk around with the unspoken expectation that it should be. When it isn’t we feel disappointed and almost as if we have been robbed of what was rightfully ours. Of what we were entitled to. Aren’t we all entitled to a life that is fair? No. In fact, we aren’t entitled to life at all.
Every breath that we take is a privilege, a gift from above. Some of us are even blessed enough to have the sustaining health to go with it. Even the ability to fight for one’s life is a precious gift. A gift I try to remind myself every time things seem too hard. A person could spend the rest of their life asking why one person gets to fight for their life while another one dies right away. Or why, yet, another lives a long life of health and prosperity. Our minds will never understand the answers to such questions on this side of heaven.
Most of the time we take life for granted until our lives collide with something catastrophic enough to wake us up. Only then can we open our eyes wide enough to truly see what we have been given. The closer you are to the catastrophe the wider your eyes are opened. I’m sure every eye in Boston is open so wide they are dry, longing to simply blink.
I will never say I am thankful for this disease. Ever. I will never say I see it’s purpose or that I see why it stole my daughter’s innocence and drug her through this horror. But I will say I am a better person having walked through it with my beautiful daughter. And I can say that whether Izzy’s life is as long as the ocean is wide or as short as a blade of grass I will forever be more full of life having loved her. Having been given the privilege of knowing her and raising her. All that said, I will never give up. I will continue to pray for her complete healing and pray we win the war.
A.W. Tozer says the following about prayer:
“In all our praying, however, it is important that we keep in mind that God will not alter His eternal purposes at the word of a man. We do not pray in order to persuade God to change His mind. Prayer is not an assault upon the reluctance of God, nor an effort to secure a suspension of His will for us or for those for whom we pray. Prayer is not intended to overcome God and “move His arm.” God will never be other than Himself, no matter how many people pray, nor how long nor how earnestly.
God’s love desires the best for all of us, and He desires to give us the best at any cost. He will open rivers in desert places, still turbulent waves, quiet the wind, bring water from the rock, send an angel to release an apostle from prison, feed an orphanage, open a land long closed to the gospel. All these things and a thousand others He has done and will do in answer to prayer, but only because it had been His will to do it from the beginning. No one persuades Him.
What the praying man does is to bring his will into line with the will of God so God can do what He has all along been willing to do. Thus prayer changes the man and enables God to change things in answer to man’s prayer.”
I do not believe that Izzy’s life is up to a coin toss. I believe God is capable of immeasurably more than we can fathom if only we would ask. If only we would believe. Izzy has been blessed with the chance to fight and I will use it enjoying every moment and kneeling at the throne of God, declaring life and healing for her. Over and over again I will sit at His feet and ask for the darkness to never return to her body. She can be one of the ones that lives. And on days when I see the imagine of the coin being tossed into the air, I will ask Him to catch it before it ever lands. Her fate will not be decided by a coin toss.
When God was delivering the Israelites from the Egyptians he allowed Moses to part the Red Sea so that they might cross on dry land. In their fear Moses told them:
“Do not be afraid. Stand still, and see the salvation of the Lord, which He will accomplish for you today. For the Egyptians whom you see today, you shall see again no more forever. The Lord will fight for you, and you shall hold your peace.” Exodus 14:13-14
Today I will choose to believe He can do the same for my Israelle. The Egyptians are gone from sight, may they disappear entirely never to return.
