Proceeding with Round Three

Hi,

I just got an email that we are cleared to proceed with Round 3 of the Millennium. We'll start Hans today at full dose. I'm just a tiny bit nervous - I guess this can go either way - it can go like Round 1 did, pretty smoothly, or it can be a little rough. Whatever happens - please just pray with me that it will clear up that bit of tumor on the skull. It was nice to see some progress was made with the first round, but of course, I'd like to see it gone. We scan again in Philly on Feb 9/10.

I put a request in with the school that Hans starts the home bound program until at least the next set of scans. I don't have any idea when someone will start coming or how often they'll come, but I'm glad he'll be getting some kind of education!
Of course, I'd rather he was at school with friends and classmates, learning in a group setting, but with lowering counts, light sensitivity, sporadic headaches and truly what we suspect is a whacked out new baseline of an immune system...we figure maybe we'll get one more Round under our belts to see if there is any predictability to this drug before sending him back:( These are hard choices to make, and they really aren't fun. They aren't the kind of choices any of us would really want to be making. Hopefully we are doing the right thing.

Hans had an office visit and counts yesterday and they were a little bit off from what I had expected. ANC had dropped to 1100, but HGB and Platelets were okay at 11.0 and 268. They odd thing was that his Glucose was low at 61! His other chemistries were all pretty normal...So, hmmm, that was kind of odd about the Glucose. And yet, he was running around clinic with more energy than usual yesterday???? This Kid! He'll keep everyone on their toes. The treatment for low Glucose: keep the blue Kool Aid coming...


Couple pics from the weekend. We like to go out and wear Honey out by throwing her the ball. Hans is too young for the dog park, so we have to find an empty park or an open space. Hans also got to get out with us and have a playdate with a group of pals, he was running around pretty well and keeping up with the little ones. The light didn't seem to bother him outside. But, at home, he's going around closing blinds, and turning off overhead lights and just letting us have lamps on... Oh, and his poor little head of hair...he already has much much less hair than in these pics from Sunday. It's been an interesting pattern of hair loss, thinning all over, and now a bald spot the size of a CD on the back of his head from where he lays his head on the pillow. Poor kid doesn't like losing his hair at all. He sprinkles the stray hairs he finds back up on top. But, oddly enough, lots of new baby hairs are sprouting back in all over. He keeps coming up with imaginary reasons his hair will come back in:
Maybe if I take a shower my hair will come back...
Maybe if I take these white meds my hair will come back...
Maybe if I get a pillow pet (an ad on tv) my hair will come back...
He falls asleep with his hand propped up on his cheek to save the hairs on the back of his head:( I think Kev's going to give him a buzz cut tonight, if he can talk him into it. I think it'd be more exciting to focus on the new hairs coming in. But, we figure his hair 'do is his call.

That's the scoop on Hansie. We've got Erik, Sam, and Sydney on our hearts and minds, who have each learned of new progression.

Lara