Saturday, June 12, 2010

June '10

We just completed month 27 on Kevin's protocol. This number is derived from the time Kevin was accepted into St. Judes on the SJMB03 protocol. This protocol and it's accompanying timelines and benchmarks are important parts of our live's. In the beginning, Dr. Gajjar made sure we didn't look to far ahead....This could be overwhelming, and the objective back then was simply to get Kevin through radiaton and high dose chemo in fair health (relatively speaking) and void of even a trace of a tumor. Our life was all about very short term goals. I'm happy to say that we're looking at long term goals now, and for the average, healthy child this is probably taken for granted. But when Dr. Gajjar talks about things a year away, and the Endocronologist talks about what we should prepare for when he hits puberty.........well it's a modest, yet meaningful milestone. We no longer talk about the next 3 or 4 weeks, it's now about the next several months and even years. We're not out of the woods, as it was made so painfully clear by a family we met. Their child is doing great, but they told us of another medullo patient who's had a recurrence. He's actually about 1 1/2 years behind Kevin in his protocol, and we've met them during 3 of our visits. He's a 3rd grader who is like Kevin in so many ways. He's bright, thin, precotious, inquisitive, and very, very brave. At any rate, his mother eloquently explained to me that Kevin's a role model for their son (I'm so embarassed that at this midnight hour I forgot his name........I'm sooooo horrible with names, but not faces), as they've celebrated Kevin's impressive progress, using it as a benchmark for their own son. It felt so good to be in that place, where Kevin's now a model for success and progress, as opposed to when we were haning on to anything for a glimmer of hope. Kevin's now what Steven, Ethan, and Heather (even though she was only a month or two ahead of Kevin, which is indicative of how our goals were in baby steps for a while). So in a nut-shell, life is good. We have many things to deal with over the course of the next several years, but taking everything into consideration, like Steven, Heather, and Ethan, he's doing incredibly well. I met a lot of wonderful people this last trip, who made quite the impression on me. I'm grateful for so many things, above and beyond Kevin's health.

Kevin's appt. is set for mid July for the Endocronolgist. At that point he'll start Growth Hormone. It's a bit scary, as Kevin hates needles, but it's something we'll get through. Also, Kevin's been doing ver well in school. He's a bit forgetfull in homework (we're working on this), but he's done exceptional on test. Overall, things are great.

Happy Summer!


1 comment:

Latu said...

I've been browsing through your blog, and just really wanted to say thank you and good luck with Kevin! It is nice to be able to read about other kids with medullo, a lot of the time, it seems like the only cancer kids here in Utah have leukemia, and do not share the same treatment path as my nephew. Thank you for your honesty and information!