I woke this morning well before the sound of my alarm. Well before the dogs began to pace or the sun began to rise. It was not like one of those days when you wake up and it takes a blink or two before you remember where life has taken you. No, I knew the moment my lids separated that I did not want it to be this day. I closed my eyes tightly and sunk further under the covers trying desperately to fall back into a deep slumber. But my heart was racing too fast, my lungs were taking short, shallow breaths and I was trembling.
There was a time when I couldn’t stand the waiting. I wanted the tests because I wanted to know. But this time, because of the prognosis that was on the line, I didn’t mind waiting. I enjoyed what was happening in the waiting – the living. I simply didn’t know if I could bare to know the results. Could I handle it if they told me the cancer was back and we were only walking a downhill battle? I didn’t know.
I knew I had grown quite comfortable living in the waiting this past week. I had found hope there. Hope that could be torn away in a thirty second phone call later that day.
I began to read through scriptures of promise I have been trying to take up residence in. I tried to focus on words of Truth instead of statistics. Instead of the many heart breaking stories I am watching all around me in the lives of other pediatric cancer patients. I found peace.
But all day long as I waited the peace slowly began to dissipate. I nearly threw up three times in the radiology waiting room. I would run into nurses who have cared for us in the past and they would look at me with condolence in their eyes. I didn’t want their condolences damn it. She wasn’t dead. She was alive, on a scanner and it would not determine her destiny. And I claimed that over and over again through my tears. I declared it though I didn’t feel any emotion attached to it.
It was just after five when I got the call. The call that will go in the book of calls that has changed my life forever. The scan indicated the tumor was MIBG avid. It is indeed neuroblastoma.
I talked with no emotion to the doctors for several minutes. There will be a biopsy next week to see exactly how best to treat it and they have contacted their Phase I Research Team to begin looking at chemotherapys to possibly target it. We won’t know more until the first of the following week. But this is what I do know: with relapsed neuroblastoma the medical goal is no longer curing the patient, it’s keeping the patient stable as long as possible.
I told Kendrick and then together we came in the hotel room and told Izzy, “That was Dr. Weiss and Satheesh, baby. We need to talk.”
She wept. She buried her face in the pillow and did the thing that I wanted so desperately to do. She bawled her eyes out.
“I don’t want to have cancer again,” she said, her lip trembling. “It’s not fair.”
We talked for a long time and finally she said she just wanted to go to sleep. I snuggled up close to her, having flashbacks to all the times I lay close to her during treatment. Silent tears fell down her cheeks and began to fall down mine. I stroked her hair, cherishing every strand.
“I don’t want to start staying at the hospital again,” she said through her slow tears. “I don’t think we’ll be doing much of that babe. Treatment won’t look like that this time,” I assured her.
“Why?'” she asked? I swallowed hard and tried to keep my composure, “it will just be different this time.”
“Will I lose my hair?,” she asked with the desperation of a grade schooler now and not a four year old. “Probably at some point,” knowing I had no idea which chemo we would try first and finding one that kept her stable would be tricky.
“Then I want you to lose your hair with me again,” she said. And of course I said I would.
When it was all said and done and we said good night I told her I loved her forever like I sometimes do and this is what she said back, “I love you mama for my whole life…and my whole history.”
Blessings on you today…and I will declare it until the day either she or I take our final breath, LIFE FOR IZZY.