Off-treatment clinic visit #13

This afternoon, Katie had to go to her first clinic appointment on the "every 2 month" schedule. She was not thrilled. She absolutely hates to go to clinic because she knows that clinic = blood draw. I feel so bad for Nurse Danielle (who is the absolute best plebotomist that I have ever seen) because Katie just hides from her, I mean she literally crawls under the chairs to hide from her. I feel bad for both of them really. It's so hard for Katie to understand why she needs to have her blood tested because she is healthy. She doesn't really understand that if there were to be a relapse, this would be the best way to catch it quickly and treat her for it.

We met with Dr. Usmani today who talked a lot about the possible late effects of her treatment - heart problems, liver failure, brain damage....UGH! My head was spinning. She showed me a "summary" of her treatment that she is putting together and this "summary" lists everything out in black and white what drugs she received, how many times and the dosages of each. It made me cringe to see it like that. I mean as you are going through it, it's bad, but you just do it. Now, looking back at the whole picture and seeing all the toxicity that her little body had to endure, it horrifying. Now we need to worry about all the possible side effects of these drugs. The good news is that the "toxicity level" for cardiac or other organ damage is low. The bad news is that they want to watch her very closely for possible brain damage. The concern is due to the 15 intrathecal (lumbar punctures that contained 3 different types of chemos) chemo treatments and high dose methotrexate that she received. They are going to start by scheduling a baseline evaluation after her 6th birthday (in a few months). This is all very scary to me. I think the poor kid has been through enough, but it will just never end for her unfortunately. I guess on the bright side is that she is alive and well. It will be a pain for her to have to worry about things that other kids don't have to worry about, but she is alive to worry about those things. I thank God every day for that blessing.

We did not get the results from the "titers" that they took at the last visit, so I need to call and find out about that before her annual check up with her primary care physician.

Her next clinic appointment is scheduled for Wednesday, March 7, 2012.