Saturday, February 28, 2009


We are back at NYU in the Pediatric department. Isabella had a slight fever this afternoon and since she is neutropenic, we didn't want to take chances so we drove her in. Her temperature was 102 at one point, but the last measurement had it at 100.3. The standard treatment is to give her antibiotics and watch her blood cultures for 48 hours, so we'll be here a couple of days. Isabella was a little groggy earlier, but has since perked up. She also had a couple of nose bleeds so she may need a platelet transfusion too.

Friday, February 27, 2009

Chemo Cycle 3 Completes

Today is Day 14 of Chemo Cycle 3 and Isabella received her last dose for this cycle (vincristine through her port). This was done in a quick visit to the Hassenfeld children's clinic in NYC and she is now home. Isabella continues to feel better and is eating and drinking well. Her blood counts have continued to drop with her platelets and white cells at very low levels.

We'll probably just take it easy this weekend and just play some games.

Wednesday, February 25, 2009

Slow But Steady Improvement

Just as with the last cycle, Isabella is finally slowly improving around Day 11-12 of the cycle. Her appetite is finally picking up today (she wolfed down a McDonald's hamburger, minus most of the bun for lunch) and she's beginning to act a little more like herself. All of her blood counts were low today, so she's receiving platelets infusion and red cells. She has had some nose bleeds over the last couple of days, which is a direct result of the low platelets (which clot the blood). She has also been lethargic, but we expect her energy to pick right up after her red blood cell infusion. During the last cycle, she immediately perked up after her red cell transfusion. Finally, she is also neutropenic again (low white cells), meaning she is susceptible to infections, but we are giving her neupogen shots at home to assist with the white cell creation.

So I think we've turned the corner for this cycle. Julianne has been speaking with the nutritionist and scouring the Internet for all sorts of low carb/high fat/high protein recipes that we are trying to get Isabella to eat. (I'll see if I can get Julianne to post some of her more unique recipes she's discovered.) Isabella has been pretty good at trying new things over the last few days, but her tastes are even pickier than ever - so we'll just have to wait and see what kinds of foods she likes. Isabella has one last shot of chemo (vincristine) this Friday, then at some point before the start of Cycle 4, we will do another stem cell harvest.

We will also be continuing with in-home physical and occupational therapy and learning.

Thanks for keeping up.

Monday, February 23, 2009

Quick Update, Plus a New Diet

We're still touch and go with Isabella. On Sunday for the first time in a week, Isabella was drinking well and she started to try and eat different things. Her appetite is still being affected, but we're not sure if it's because of a change in her taste or her stomach is still not feeling quite right. She's lost a lot of weight since the last round, but she is starting to taste a few things. We had some family over and for the first time in a while, she was smiling and engaging, so again, we had some positive signs.

Speaking of eating, Julianne found this interesting tidbit on the Internet. For years, children with epilepsy have been treated with a "ketogenic diet". Think of it as an extreme Atkin's diet - which means low or no carbs and high protein/fat. Studies found that children on this diet reduced or eliminated seizures. An interesting side effect that they saw was that in some cases with children who also had brain tumors, it also reduced the size of brain tumors or kept them from growing.

The theory behind this is very interesting and without getting too mediciny, let me explain. Our body (including our brain) gets its energy from glucose in our blood. The glucose comes from the starchy foods that we eat. When our bodies are starving (ie, low glucose), it can switch over and begin processing our fat cells. This is the basic theory behind those low-carb diets - reduce or eliminate the carbs in your diet so that your body eats away the fat. Now the interesting part of some preliminary studies is that our brain cells have evolved to be able to convert fat cells to energy, but tumor cells have not. This means that if there is no glucose for the tumor cells, they just shrivel up and either die or lay dormant, while the healthy brain cells continue to process fat cells for energy. We should also point out that there are no official studies or clinical trials for this diet for brain tumors in humans.

So for the last few weeks, Julianne has been researching the study, contacting the doctor who started the study, contacting nutritionists for their feedback, and looking for recipes. Although a menu of bacon, eggs, and steak sound great to me, Isabella might not find it too appetizing. We've offered her numerous high protein/fat items and she's refused them, but frankly, she's refused pretty much everything that we've offered (including ice cream and cake). We're just hoping that's because of nausea from the chemo and that she'll begin eating shortly. But this is going to be a very hard diet to maintain - just imagine a kid not being able to have birthday cake or ice cream? But if it keeps the cancer cells from growing, it'll be worth it.