Tuesday, August 12, 2008

Well Hannah has graduated! We went to clinic today for our monthly check up. Hannah's counts were largely unchanged, white cell count up only slightly, ANC up slightly too. Still not in normal range, but acceptable for now. We also got a script for her next MRI-end of August. Oh boy, looking forward (NOT) to that. We discussed the osteopenia-more on that below-and that was about it. Hannah's next monthly appointment will not be in clinic, we will now go to the "brain tumor clinic" which is separate from where we have been going since the beginning. The regular clinic is where all patients are seen, no matter what kind of cancer or other hemotology issue they have. She gets her finger stick, gets weight, blood pressure, height, temperature, then we wait to meet with the doctor to review the counts and discuss any other issues. Today it was crowded as usual, with many new kids we had never seen and some old friends too--HI KAITLYN!!

Hannah is now 9 months out from the end of her treatment, she is doing well, so she has graduated!! Brain tumor clinic is only once a week, on Tuesday afternoons. When we come in for a visit, Hannah will see the oncologist, the neurologist, endocrinologist and any other specialists on that afternoon. Sounds pretty convenient, we'll let you know how it really works. But, I do believe this means she won't have to get the finger sticks any longer (although I may be wrong on that one.)

I did speak with Hannah's endocrinologist yesterday. They said that her blood work all looks normal, but she definitely has osteopenia/osteoporosis. Why? They don't know for sure, it could be the radiation or the chemo or the steroids, or some combination of all of those necessary evils. They don't want to treat her with drugs they would treat an adult with, they have many unknown side effects for children, especially girls within child bearing age. They want us to supplement with 800 IU's of Vitamin D (double the recommended amount) and 750 mg of Calcium (about triple the recommended amount) daily. We will have to do follow up blood work also in three months to be sure she is not getting too much vitamin C in her system, which can cause kidney stones.

At the time we get that blood work done, we will also have the preliminary blood work done for growth hormones. Radiation treatment usually causes stunted growth and hormonal issues (if the thyroid was in the field of the radiation, less of an issue with proton rads we hope). When Hannah had her bone age test done, she tested at 6 years, 10 months of age. In one regard, that is good news, it gives her bones more time to grow to help catch up on growth that she may lose due to the radiation to her spine. However, another doctor explained to me that the other school of thought here is why did she test so young? Is there a growth hormone issue? Although they will do the testing, the wouldn't even consider giving her any type of growth hormones until she is 2 years out from the end of treatment, since it has been known to cause tumor regrowth. So, you would get taller, but you would only have less than a 10% chance of further survival when your brain tumor came back.

Everyone keeps remarking on how tall Hannah is getting, but she has fallen off somewhat in her growth chart already to the 5.9 percentile (from the 20th, to the 10th, to the 5.9th.) We have noticed that the growth is coming more from her legs than her trunk area (where she received direct radiation.) It's something we will have to monitor from now on.

I want to share a video with you from a little girl with leukemia. Unfortunately she lost her battle, but along the way she made this video diary. It is pretty realistic, and shows some of what it's like to be a kid with cancer. The rage she displays is from the steroids (which Hannah did not have to be on after surgery, thank goodness.) It's pretty powerful. It also gives you an idea of why I spoke with the doctor today about a psychologist referral for Hannah.

♥Kim