Levetiracetam and Ursodiol and Busulfan Oh My (D-5)

"To a father growing old nothing is dearer than a daughter." - Euripides

I didn't post yesterday because there wasn't really much to say. It was Saturday and the hospital was really quiet. Elise had her 4th of 5 doses of Campath and everything went smoothly. She did have a low grade fever from late Friday until early Saturday morning, but nothing anyone seemed worried about (except me).

Today was more of the same. She got her last dose of Campath this morning and she slept through most of it. She hasn't had any fever following it (so far). After sleeping for a while she woke up refreshed and seemingly unaffected.

As with yesterday, Becky came down to the Hospital campus and we spent several hours in a picnic area outside the Children's Inn which is right next door to the hospital. The whole NIH campus has nice grounds and the weather was really awesome, so an afternoon outdoors was welcomed by all of us.

Today Becky brought pizza, bread sticks, and (drum roll) key lime cheesecake for me for Fathers Day. My favorite! Yum! (Thanks Doug and Dottie for the latte money!)

Becky is still coughing so she can't come into the hospital. It seems to be worse in the morning, so if her coughing calms down tomorrow later in the day we're going to give her a mask and see if they let her in (more like see if they kick her out).

Today they started Elise on a drug called ursodiol. It's used to help protect against hepatic veno-occlusive disease (VOD), also known as sinusoidal obstruction syndrome. VOD is a major complication of hematopoietic stem cell transplantation and it carries a relatively high mortality. The risk factors for VOD include just about everything they do for transplant so trying to prevent it is a smart thing to do. From what I can tell the prevention medicine doesn't always work, but some protection is better than none.

They also plan to start Levetiracetam (Keppra) this evening to prevent seizures during the next course of treatment with Busulfan. The dose of busulfan that Elise will get is relatively low, so they wouldn't expect any seizures, but they want to prevent them if they can. I was relieved to hear they were going to use Keppra instead of Lorazepam as adverse effects, including amnesia, depression and effects such as excitement or worsening of seizures, may occur (per wikipedia). Kids are more sensitive to the effects and several people (including the transplant staff and nurses on duty) had warned us that it could be a rough couple of days. The studies show that both drugs have appropriate outcomes, so based on that limited info I have I'm glad they are going with Keppra.

Tomorrow Elise has the first of two sequential days of a drug called busulfan. Busulfan "causes profound myelosuppression at the recommended dosage", ie it significantly suppresses the function of the bone marrow. This is the "big gun" drug in the conditioning regimen for a stem cell transplant. Elise will receive a somewhat reduced dose compared to someone with leukemia. Other than the minor fact that it suppresses the function of your bone marrow where all your blood cells are produced, it has minor side effects that are listed on any medication you buy: headache; diarrhea, constipation, nausea, upset stomach; flushing. There are more severe, but also more rare acute side effects as well but I won't list them here.

We're hoping that the tolerance Elise has had for the conditioning regime so far will continue this week. Friday is the big day, she's scheduled to get the donors stem cell infusion. So keep Elise in your prayers.

I turned 52 on Saturday. While I wish I could have been out hiking, running, woodworking or with Becky at Lelani's drinking a mai tai, I really couldn't think of anyplace better to be on my birthday than helping my daughter progress towards a cure. After all, I want my daughter around when I grow old, which isn't any time soon.