A few days ago I asked for prayers for sweet Ava as they yet again took her to surgery to see if her neuroblastoma was back.
In the neuroblastoma cancer world - which kills MORE kids than any other form of cancer - the goal is to get to two years No Evidence of Disease (NED). This is a huge mark in recovery and usually speaks volumes that the cancer won't come back.
If you obtain 5 years NED you will be officially cancer-free.
Ava is two years NED. She is meant to be golden...
Ava had yet another scan recently but the spot still lit up AGAIN. How could this be? The surgeon removed it? The surgeon went in again on the other side and found it to be the deadly cancer of neuroblastoma attached to Ava's aorta at her heart.
How could this be possible....?!
Ava endured everything Cannon did. 6 rounds of chemo, tumor resection, stem cell transplant, 6 months of ICU antibody treatment, radiation. She was declared two years NED but a spot came up on the MIBG after a surgery a few months ago and they said it wasn't cancer. I remember talking on phone with Nickelle, my dear friend and Ava's mum about how we knew it wasn't cancer and like Cannon she was NED for life. Nickelle and I text all the time and say "No relapse ever."
How could it be back??????
Well it is!!!
Ava, age 5, had prayed the night before her surgery "Please God, don't let the cancer be back."
How, as a parent, do you explain to your child that the next two years will be filled with horrific, painful chemo, radiation and immunotherapy which is extremely painful so much so the children that endure it are on steroids and morphine to control all the side effects. How do you explain that??
When I was at Easter Mass yesterday tears streamed down my eyes as I explained to God how unfair it was. How it wasn't right that Nickelle, Spencer and Ava were in New York on eEster while their three other children were in Miami. It just isn't fair.
Often, at times like this we get angry with God...
The truth is MY God, who I believe in, is just as upset and sad and pained as Nickelle is. He sees every tear, every cry.
Instead of praying for no cancer, now we must pray that Ava beat her cancer that is back. That her body is stronger than ever. That her body stays strong and fierce like it always has been. That her parents stay faithful and KNOW that Ava can beat this! That Ava WILL beat this!!!!!
I first spoke with Nickelle when Cannon was newly diagnosed. I was pregnant with the twins and Cannon was in the ICU. We spoke for hours and she has truly been a shining light in my positive attitude that Cannon could beat this. She would send me books and care packages and notes form conferences. I carried her notes around for 18 months as my guidebook for Cannon.
As soon as she texted me that Ava relapsed I looked at the sky and said "NOOOOOOO NOOOOO." After sobbing I called her immediately. I told her I KNEW Ava could beat this! I told her:
"I am saying it!!!
I am believing it!!!
I will say it!!
I do believe it!!!!"
Ava is gifted with truly extra ordinary parents... the most educated cancer parents I know.
Help this family by supporting Ava in prayer. Ava's CaringBridge page is Ava Crowley.
Please pray hard!!!
Written by Mumma-Bear
Cannonball Kids' cancer
Thankful For The Fight
317 Days No Evidence of Disease
No Relapse Ever