Puuberty, Brain Function, and IV Anxiety

Our travel to Memphis went smoothly this time. A two hour-delay due to American Airline's computer system going down, but nothing else, no metal bra hook searches, no detailed searches of our checked baggage-- it went well this time.

A Memphis friend surprised us by meeting us at the airport and taking us to dinner before dropping us off at Grizzlies House. We call this smooth sailing.

Monday morning-- We set the alarm, carefully, tested it, but still it didn't go off. We awoke with half an hour to shower, dress, and make it to our appointment. We made it.

Radiation screws up brain function. The brain is responsible for telling the body when and how much to grow, when its time for the body to go into puuberty, all that stuff.

When the brain messes up, the symptoms vary all over the place-- growth could be too great, or it could stop abruptly. Puuberty could come early. late, too fast, too slow, or not at all.

There were two female nurses that examined Steven. They did a very thorough examination of his "private parts", accompanied by much hmm'ing and haa'ing and a ruler.

The upshot of the exam was that Steven is in puuberty. At the age of 9, this is considered too early. We are reminded that he's had the beginning of acne this summer. Treatment consists of a drug that stops the process temporarily, but for now everyone is just watching and waiting.

The next thing that could become an issue us his rate of growth, most kids that get craniospinal radiation at his age end up taking growth hormone, but they want to wait and make absolutely everything is stable with his tumor before starting anything like that. All this is more or less a warmup for his next visit.

Tuesday was supposed to begin with a functional MRI, where Steven would watch a computer screen and press buttons while MRI pictures of his brain recorded his brain activity. The people who administer the test failed to show up, so this test was postponed until 4:00 pm. And to think we could have slept instead of hanging out in the radiology waiting room for over two hours...

I couldn't take my camera into the room because of the huge magnetic field, but the computer screen is at the far end of the MRI tube. Steven wears a cage over his head that has a mirror in it that allows him to see the screen. The screen is a mirror image of the computer screen, so when he looks at it in the mirror, he sees it as it should be.

Steven spent four hours yesterday taking the first half of what is basically an IQ test. He took one back in October at the very beginning of his treatment, after the surgery, and they will be comparing the results to look for effects of radiation.

I went to Steven's clinic Monday and tried to arrange for them to put his IV in today well before his actal MRI, as in the past we've had his MRI's delayed due to people being inadequately equipped for Steven.

They resisted at first and told me that we'd made a mistake by taking out his central line. Steven and I don't share that notion, the idea of not being able to swim, having to put up with daily flushing of the line and thrice weekly dressing changes for two years for the purpose of avoiding four IV's a year doesn't seem like a good tradeoff to us.

I persisted, and now he's got an appointment this afternoon two hours before his MRI just for the purpose of putting in the IV. Child Life will be there to distract him, we're going to give him a heavy dose of ativan, and we're going to use the numbing cream Elomax well in advance.

They don't like to do this, because the cream takes at least half an hour to work and it's expensive. Personally I have problems understanding why they can't put him into the same room they use for his lumbar puncture and give him a little gas before they put the line in, the whole thing would be over in 10 minutes, but nobody seems to want to do that. Hopefully the ativan won't make him as weepy as it did during chemo.

So today we head off for a blood draw, hearing test, another four hours of IQ testing, a heavy dose of ativan and hopefully an easy insertion of his IV, and the main event of the trip, the MRI of his brain. Hopefully that will go well and I'll be able to start sleeping again.

Sean won fourth place in yesterday's golf tournament. This is the first time he's gotten a trophy playing against the best of the 8-and-under players, those little guys are really good.

Hope you all have a great day.

-- Kathleen

p. s. I know how to spell puuberty correctly-- really.