Sooo, we didn't make counts again! We are closer... ANC is up to 570, HGB steady at 12.1, and Plts were pretty good in the 180's. I guess the take home point is that we don't want to hit him when he's down. We don't really understand why the counts are taking a bigger hit this go-round. Maybe a bit of a cold bug is bogging down the ANC? Maybe something more sinister? Who knows. We actually had to go back into TCH today for some labs they forgot to draw on Tuesday. Argh. I was trying to stay positive/keep it in perspective... it's about an extra 4 hours for us - compared to just being able to get them drawn right here! I think as a parent of a child with a life threatening illness - you're really in a weird space mentally. I find my 'self-talk' really walks the line of half-empty/half-full...
Everytime a problem crops up you think,
oh but we were going to ...
Hit the pool
Go to Pump it Up
Squeeze in another playdate with a pal before our trip
whatever, anything, just have a day that relatively approximates "normal"...
BUT THEN, at the same time your mind reassures itself...
But, at least he is here to get labs drawn,
at least he doesn't need a transfusion,
at least he doesn't have a fever,
at least we have health insurance,
at least we are able to get him what he needs,
at least he is sweet, and gorgeous, and 7.
Ah well, I guess I need to get a list of the labs to be drawn the week we start a round and make sure that we do in fact get them. (It was Bilirubin and ALT that were missed and I had no clue those were prereq's of starting the next round, but now I do!)
Hans really seems to be okay. We've gone out and done a few things this week... playdates with old pals - we met Adrian and Morgan's new kitties on Wednesday, and took Michael and Ryan for a swim yesterday. I was raising my eyebrows when Hans said he was ready to go home at about 45 minutes... that's unusual.
Also, a big deal this week is that we wrapped up our summer session of Home School. Our wonderful Ms. Lisa lovingly dedicated about a dozen sessions to Hans this summer. She has just about brought him up to speed. I can't believe the remarkable fact that a Title One Reading Interventionist lives across the street from us, and volunteered up a special part of her summer for Hans and his reading! Wonderful!
Kevin and Hans - we just pulled out our old popcorn popper. Hans has been asking for "cheese salt" for popcorn for about a week. I finally managed to bring it home from the grocery store tonight. Simple pleasures...
Lisa's incoming Kindergartener Ivory - in her end-of-summer-session reading performance at our house today.
Hans - in his end-of-summer-session reading performance at our house today.
- Hans Weberling
- Bakersfield, CA, United States
- Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.