Monday, January 22, 2007

Too Toxic?

1 year 7 months and 21 days since diagnosis. Since that date 19 children from my Childhood ALL (acute lymphocyte leukemia) support group have relapsed.

19 children in 20 months.

8 children have passed away. Including one over this weekend.


Most of you probably remember me posting about Clare. I was so devastated then. She was the same age as Josh when she was diagnosed; she was on the same protocol Josh is on now. It was the first death I seen from this awful disease. 8 children - and a year and half later - it doesn’t get any easier. Donovan was barely 2 years old. He fought a HARD battle nearly his whole life. He was just over a month when he was first diagnosed. Baby D and his family used to live in Indianapolis, but moved to North Carolina over a year ago when Donny underwent his Cord Blood Transplant at Duke. Baby D and his family are HUGE Colts fans. I sat on the edge of my seat tonight as I watched the second half of tonight’s game. I believe the Colts had an extra player pulling for them tonight from the sidelines!

Since our beloved Steelers aren’t in it this year… I gotta say – GO COLTS! GO! Let’s go win that Super Bowl! And if you'd like to leave a message for Melissa and their family, follow this link.

In other news: I haven’t really updated cuz honestly, I didn’t want to “bug” you guys so soon

But now that I’m here…

Josh’s last visit went extremely fast. Considering… It was a spinal week, so we left Erie early (read: 4 a.m.) but he was the first patient on the OR roster. Had a new anesthesiologist... and don’t know what he did different this week, but Josh woke up extremely fast this time and was in wonderful spirits. Ate not only the one [required] Popsicle but asked for another! Imagine that… and this was BEFORE his roid-boy week.

So we made it up to his clinic appointment a whole HOUR before it was scheduled… in comparison, usually we are late to the doctor’s appts on spinal weeks. Here we hit a little snag. I guess Joshua is showing some toxic side-effects from one of his chemos, Vincristine (aka: mean christine). So the doctors had to decide on whether he should get this month’s dose. In the end they decided the benefits outweigh the risks and he received his IV-chemo as scheduled. Now, I guess I should also mention that Josh’s counts have been doing EXTREMELY well. Too well actually. Remember when I’ve told you that in order for the chemo to do its job it kills the cells in the blood – the good with the bad? So another of his chemo doses, the one that he takes orally every night, was raised. That and they raised his weekly oral Methotrexate dose. Yet another chemo. These are the little orange tablets Josh _hates_ taking, there are 5 of them and the part he dislikes is having to swallow so many. After the first few he tries to convince me he’s had enough and is done. Anyway, he now has to take 6… so far he really hasn’t noticed the difference ;-) It doesn’t hurt that I try to sneak in two at a time… ;-)

Doesn’t really make any sense does it? How one chemo can be too toxic, and the other not strong enough... Guess that’s why I’m just the willy-nilly mother sitting not-so-patiently on the side-lines. Although, sometimes I do think I deserve an honorary MD badge!

And to wrap things up, Josh will go back to Pgh this week to have some test done on his heart to make sure there wasn’t any damage done caused by yet another chemo, Doxorubicin (I hope I spelled that right cuz I don’t feel like looking it up at this hour) that he had way back in his Delayed Intensification Phase. ***Remember Ding Dong D.I. is done!?

So that’s it. Two chemos were raised; we have an echo this week and go back in two weeks for our regularly scheduled chemo appt. No spinal though… just “mean christine” and counts.

Until next time… Love from the whole clan!

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