We walked in to Cincinnati Children’s Hospital this morning with hope and we walked out feeling like we had been hit by a bus. We still know this is the best place for us to be. But as we went over 40 pages of protocol describing the horror Izzy would be subjected to over the next 15 months we began to see that hope doesn’t always come in a pretty little box.
We will spend the rest of this week finishing testing so that they can confirm the staging Indianapolis determined. Next week treatment will begin.
We’ll start with chemotherapy. Six doses, each of which will be administered during a 5 day inpatient stay. There will be a 2 to 3 week gap between each dose. They also plan to place a permanent feeding tube through her nose during the first week which will remain in the duration of the 15 months. Most children are too ill during treatment this aggressive to eat and maintain a healthy weight.
After the 6 doses of chemo we’ll be inpatient for a few days for a stem cell harvest. After that the abdominal tumor will be removed. Then two more doses of chemo.
Then she’ll go through what’s called MIBG therapy. It’s a special kind of chemo that combines radiation. Afterwards she herself will be so radioactive that she cannot come into contact with people or things for 7 days. She will stay in a special room with lead walls, ceiling, floor and bed. Kendrick and I will take turns caring for her wearing safety suits. She won’t be able to bring anything in the room with her (like her favorite blanky) because if she were to vomit on it or something it would have to be destroyed.
Then she will receive her stem cell transplant. This will require the longest inpatient stay lasting possibly as long as a month.
After that we do some regular radiation and some special kind of chemo called Immunotherapy. It’s too complicated to explain and I’m too tired.
And there it is. That should put us at October next year. I can not even begin to imagine the drastic toll this will take on our family. It grieves me in a way that words cannot express.
But we will press on. We will move forward believing that the Lord is walking every step of this nightmare right by our side. And when we are too weak to walk we know He will carry us.