Friday, May 11, 2007

Hannah is receiving her third day of chemo right now, she is sleeping through it. She has been eating practically nothing since we have been here. Yesterday her diet consisted of dry cereal, a candy bar and 2 pretzels. For the first 2 days here, she did well with only a slight stomach ache. Today, her stomach got a bit worse and she got sick a couple hours ago. I just hate to see her throw up what little she is eating. She did eat candy and crackers about 10 minutes after throwing up, crazy isn't it! At this point, I am trying to get her to eat whatever she wants, just to get some kind of calories in her. The doctors all say this is common, and can't give her any IV nutrition yet, because it will interfere with the chemo drugs. I'm sure she has lost weight already, I think she looks thinner, but it could just be my imagination since I see what little she is eating.

One of her anti-nausea meds makes her very sleepy, so she is taking a nap right now. I don't know how she can sleep with all of the noise and people coming in and out, the frequent trips to the bathroom because of the enormous amount of hydration she receives, but I guess it's the drugs. Obviously we can't wait to get out of here.

When she is feeling well she spends a lot of time keeping busy, we were in the playroom today playing Battleship and playdough (one of her favorites) for quite awhile with her physical and occupational therapists. She doesn't really complain, and her spirits are pretty good. She is a little upset that Colby can't come up to visit her tomorrow. Colby has a friend that she has been around whose brother has the chicken pox. So, although she wasn't directly in contact with it, we felt it better to be safe than sorry. We know that two things that are very serious for chemo patients are chicken pox and pneumonia (and probably 2 million other things also) so we felt it best she just skip the visit for now.

The nurses have assured me that the first round of chemo is one of the hardest because she has no track record with this, so we don't know what to expect. This first three cycles of chemo are different, with different timing and different drugs, then those three cycles repeat another 2 times, for a total of 9 cycles of chemo. We should be able to identify her pattern as time goes on with each of the drugs. Once I get it down, it will probably change because the effects of the drugs are cumulative, so it will get worse as time goes by as far as her reaction to the drugs.

One bit of good news today, her MRI scan from last night showed no tumor recurrence, which is the important thing. I think if there had been regrowth I would have reached in and ripped it out with my own two hands at this point. So, GOOD NEWS!

This is yet another learning experience for us. When I'm not with Hannah I am spending time researching, and networking with other families of medulloblastoma kids. There is a lot of information out there regarding nutrition, drugs and different strategies to try with every aspect of this, so you just try to sort through it all and finds what is credible and works best. Prayer most certainly helps, and we thank all of you for your good wishes and support.

xoxo

Kim