More goings on

Hello everyone. There hasn't really been much happening in the last few days so we haven't had anything to post about. There are a few tidbits of stuff that we have found out that I will share with you all.

First of all, Clara's first dose of valproic acid was administered incorrectly. Apparently the IV version does not have the desired effect and this was unknown to the fellow. This set Clara back a day where she had to receive oral valproic acid. Valproic acid does have some effect on the liver and Clara initially had a negative effect by having high levels of liver enzymes and increased ammonia in her blood. We were worried that this would result in having to cancel the valproic acid part of the regimen, but after her second and subsequent doses, her liver seems to be fine. This is great because hopefully the valproic acid is really helping the chemotherapy agents.

Clara did decide that she didn't like the valproic acid (the taste of it maybe) or any of her other meds for that matter and has taught herself to spit out medicine. For the longest time she did not like to take her oral meds, but we were able to give her small doses toward the back of her left cheek and she would eventually swallow it. Now she just spits it out. She will even wait a bit before spitting it out so that we think that she has actually swallowed it. Tricky girl... To remedy this (particularly so that she will get full doses of valproic acid) she now has a NG tube (feeding tube through her nose to her stomach). It is good that she got this because she has started getting bad at eating again (perhaps the chemo). The doctors would rather her keep having breast milk, so we just give her breast milk through the tube. She will still eat at the breast a few times a day (and is doing so as I write this), but to keep her caloric intake high enough we are complimenting with pumped milk a lot. This really makes the nutritionist and some of the residents happy because they were having a fuss about how much intake she was getting because "20 minutes at breast with ~10 of vigorous eating" was hard for them to interpret.

A lot of people are asking how to donate for the bone marrow transplant. If there is a way to donate specifically for her, it is going to be through a private lab where I am sure that it is going to be pricey. The likelihood of any one person matching her is very low. That is why it is important that there is a national registry of donors. This allows for the random person out there who matches her to be able to give bone marrow or blood to help her. If you want to do something, you can register as a donor with marrow.org and if you match her then they will select you. More likely you will not match her, but you may be able to help someone else. In fact, only about 1 in 200 registered donors are every actually a match. The donation process can be even less invasive than it used to be. Donors are now mostly giving blood as the medium for the donation instead of an actual bone marrow sample. (I think that at Stanford they still use actual bone marrow.) The registry has been greatly improved with the addition of cord blood (from the umbilical cord) donations. I would recommend banking your cord blood with a free cord blood banking service when you have a baby. The cells in this blood will probably prove to be even more useful in the future.

We will be updating soon with the process of the bone marrow transplant as we understand it so far (we still don't know much).