Setback

Pictures: Baby Christi (six weeks / Aug. 1997)

Photos taking yesterday during Christi's "good day"

After 2 ½ - 3 days of not needing to increase her morphine, peace came to a sudden halt at 3:30 AM. Christi woke up many times from then on screaming in horrendous arm pain. She told me that it felt like someone was giving her a shot on a bruise. “I’m sorry, but that’s the only way I know to describe what it feels like.” After 29 mg. of morphine (yikes!) we didn’t stop the pain, but according to Christi, “It’s moving in the right direction now. Thank you.” She had a few cookies and milk for breakfast and I’ve now crawled out of her bed so she can get some rest without me hogging the bed. Shayne should be arriving back from the Ronald House pretty soon.

I’m not certain what this means and if Dr. Maris still feels she’s “stable” enough to give her the low dose MIBG treatment next week. I’m assuming so, but the weekend is far from over. (The low dose MIBG treatment will just be an IV injection that shouldn’t do any harm to her and it can be done outpatient. It’s very different than the high dose double MIBG treatments she received here in the fall of 2003 which made her radioactive and required her to be isolated behind the lead shields, and all of her belongings disposed of as radioactive waste, many platelet transfusions, etc.) Dr. Maris said he will not give her any treatment which will cause her harm or further deteriorate what’s left of her quality of life.

The vaccine, developed and grown from Christi’s own T-cells sent to Houston from CHOP years ago, is “in the freezer”. Logistically, moving Christi to Houston to get her vaccine is not an option due to how fragile her condition is. Although the only children who have received this vaccine that we know about have also received their Angel wings, we were still hoping Texas Children’s would send it to CHOP to have her receive the shot anyway. Since there was great expensive and effort involved in actually getting Christi’s T-cells to grow and to be viable for the vaccine, it seems natural to want to be permitted to get it back. So far, no one has moved on this so getting her vaccine is highly doubtful.

When Shayla made the decision to return home last week she knew that Christi could die while she was at home and that she may never see her alive again. Shayla took a day to make her decision, but then she explained it to me like this: “When we treated at MSKCC for a whole year, it was different. I was in school there and I had friends there. Also, I didn’t have a bunny at home. Now I have responsibility.” I’m glad she was here for ten days to help her understand how very ill her sister is, but I think she made the right decision to return home and to try to get on with her own life. Thanks to all who are taking care of her back home! I miss her very much!