Delayed Intensification Day 28: Unexpected Decisions

Today is day 28 of the delayed intensification protocol. Scarlett was scheduled to go in for lab work and a physical. During her treatment there have been moments in which the protocol stops in order for her body to start producing blood cells again. Every time we get to one of these moments, it takes Scarlett an extra week to recover. It has pushed us back in her treatment by about a month. But it is a little break every month or so to catch our breath and pause. This is one of those moments.

Scarlett has really been struggling for about the past month with pretty severe constipation. The vincristine that she has received for the past month causes this. She takes two medications every day to make her go. But even with all of this, she has really struggled. The amount of food that she has been eating, combined with the vincristine, has really affected her. She cries every time she has to go. She stiffens up and says over and over “it hurts! It hurts!” Every time she sits on the potty she says “it’s too hard”. I think she has convinced herself that it hurts too badly to even try. Now she has ulcers in her GI tract so she bleeds too. I think this is what caused her hospitalization last week.

So Brock brought Scarlett to the hospital for her physical today. Just Scarlett. No clothes. No toothbrush. And why would we? We haul these big bags in and out. Just our luck, Scarlett recovered on time! So she will start her last five weeks of intensive treatment tomorrow!

So as I sat at work today processing this change of plans (have to plan babysitters, rides to school, how to get Brock and Scarlett clothes…), I looked at Scarlett’s roadmap. She has a lumbar puncture tomorrow and will start thioguanine if she doesn’t do radiation. So, we had to make a final decision regarding radiation within an hour. If we decided to forego radiation, she will get three medications in her spine and the thioguanine.

Scarlett’s oncologist has spent a lot of time poring over every detail of every study that he could find about full cranial radiation in toddlers. He has been wonderful about relaying this information back to us. He has found studies being conducted in Europe and Israel in which they are not doing the radiation. After carefully reading all of the studies, he gave us his summary. And after a lot of talking and thinking and crying and praying, Brock and I have made a decision. We have decided to forego radiation. The risks are just too much.

So tonight Brock and Scarlett have been admitted. She will be hydrated overnight and have a spinal tomorrow with three chemo meds. She will have chemo every day for four days this week. We are beginning the last four weeks of intense treatment. I am so excited but terrified at the same time. I can’t wait to get to a new “normal”. But it scares me that she won’t be monitored so closely. I am more calm than I expected to be after this decision but on the verge of a panic attack. I wonder if I will ever be at peace again.

This will be a decision that we will have to live with for the rest of our lives and we will never know if we made the right decision. We will never know if she would have had the side effects if we had done it and we will never know if it prevented her to relapse or if, God forbid she does, she would have anyways. We just have to have faith in ourselves, God, medicine and our daughter.