Brain Tumor Clinic - Nov. 10, 2009

I spent all morning until almost 1 at brain tumor clinic – where you get to meet all the specialists at one time. (Well, almost all.)

Catherine is doing well and the endocrinology tests all came back fine. They said her “growth velocity” is actually fine (That is the speed at which she grows), she just had a stall for the first year or two of her life. She should be 39 inches tall and 35 pounds by 4 years, two months. She is 34 inches tall and 27 pounds. They are hoping she will grow some more soon, but do not want to use human growth hormones because she has other benign tumors in her brain which may grow if she gets growth hormones. So, she will always be in the front row for pictures and she has no chance at a career in basketball. You should see all the charts and graphs a pediatric endocrinologist uses!

We are going to double the medicine we are giving her to make her hungry (periactin). The current dose is not making any difference, so we will see if the increased dosage will work. The endocrinologist agrees with the oncologist (who disagrees with the gastroenterologist) that we should not give her steroids to make her hungry. Apparently steroids can stunt height growth, in addition to causing adrenal gland failure. So, the risk is too great to even try it (according to 2 out of 3 of the doctors who are looking at this issue with her).

We also met with a psychologist who specializes in oncology patients. We talked about temper tantrums, emotional outbursts, etc. Catherine’s behavior all seems to be normal. We are going to get a psycho-educational evaluation in the next 6-8 months so we will know what to expect out of her before she starts kindergarten.

I was given assignments to make appointments with seven different doctors for follow-up issues. A bunch of stuff was kind of put on hold while she was on chemo and now that her treatment is over, we have to resume seeing all the other specialists.

The next brain MRI will be in January and we will go to Brian Tumor Clinic again then. When the do the brain MRI they will also do a bone scan of her left hand to look at growth issues. (There is nothing special about the left hand, it’s just what the endocrinologists use to measure certain things.)