Catherine Update

We have been at brain tumor clinic all day (so we did not go to chemo on Monday, we did it today instead). Catherine was fine – the tumor has shrunk even more. The nurse practitioner said she does not think she will lose her hair, since she hasn’t already (I know it is vain of me, but I am very happy with that news). We are in cycle 5 of 8 with her chemo. (The first ten weeks are called “induction” and don’t count in that.) Each cycle is 4 weeks, with a 2 week break in between (except when her blood counts are bad and they need to skip a week in the middle – then the cycles can take more than 4 weeks). We also had a 2 week break last 6 weeks because of the kidney surgery being rescheduled 3 times and plus her recovery took awhile). So, we hope to be done in April 2009.

She said most relapses of cancer occur within the first 6 months off treatment. So, they leave the port in for 6 months after chemo. She will have MRI’s every 3-4 months for several years. They are concerned that the muscles in the back of her legs are getting too tight, but other than that she is doing well. That can be addressed in physical therapy.

Catherine’s platelet levels have gone way up – which is good. They were down to 91,000 a few weeks ago, which caused her to have bruising all over her body. She looked like a child abuse victim – she had bruises on her rib cage, on the back of her lower legs, etc. She had bruises in places kids do not normally bruise and TONS of bruises. All of the bruises appeared in a matter of a few days. Apparently your platelets have something to do with your blood clotting and low platelets allow you to sustain tons of bruises. If her platelets had dropped below 30,000, she would have needed a platelet transfusion. Anyway, today her platelet count has rebounded to 357,000 – which is normal – even for a kid without chemo.

We have also been concerned because 2 weeks ago at chemo I inadvertently contaminated her IV line. Catherine was sitting on the examination table, getting an infusion of a pre-chemo drug called Zofran, which is to prevent vomiting. I noticed that there was a puddle of liquid under the line, so I picked it up and told the doctor (who was sitting next to me) “I think this is leaking.” When I picked it up the connection between the infusion pump tube and the IV going into her port came apart in my hand. It had not been secured properly by the nurse. Because it came apart in my hand, there was a potential that some toxin on my hand could have gotten into her IV line and therefore into her blood system. So, the nurses had to suck out a bunch of her blood through the IV line to make sure that any potential contaminant was removed. Plus, we had no idea how much medicine had gotten in her and how much was on the examination table. They had to start with a whole new dose to insure that she got the correct amount. Unfortunately, obtaining a second dose of the same medicine for the same child on the same day out of the hospital pharmacy (which is about 30 feet from the examination room in which this incident occurred) requires an Act of Congress and about two hours of time. So, that day we spent a very long time in chemo and we have been watching for possible infection, which has not occurred.

We are still so saddened about the children who do not survive childhood cancer. Every week we hear of a child passing. One of our good friends Sophia, who is 3, has just been placed on hospice. Sophia’s mom, Shirley, told me that she is trying to “memorize every touch” during these next few weeks. Every time I hold Catherine I am so grateful that she is so healthy. We are so blessed with her.