Hans is very good at counting backwards... He has been counting me down for years on meds. We start at 7 minutes, and go back. (For some reason, he doesn't require my mom or Kevin to do this backward counting, just mommy!)... He counts how many nights we have on a trip, or how many more nights daddy has to go to work, he and Elle have school. Lately, every morning, the first thing he tells his Grandma is how many more nights we have 'til Christmas. I have been pleasantly surprised that he isn't trying to sneak a peek at the presents piling under the tree, but waiting patiently for now three more nights. He is also doing a good job at giving this year. He happily handed out our little treat bags to about 30 docs, nurses, and staff yesterday. I was happy to see he was as willing to give as to receive. Last year, he wasn't feeling so hot at this time (he was just out of MIBG therapy and his chemistries had been knocked out of whack), and he didn't want to have much to do with handing out lanyards to all of the nurses, docs and staff. So, I was happy this year to see him running to each of his clinic buds and handing out treats and hugs.
It's also pretty incredible up there this time of year. Many former families - both angel and long term survivor - organize toy drives for the clinic. These days clinic looks like Toys R Us. It makes it fun for the kids who have to be there... Like yesterday - really, we were there ALL DAY, left the house by 9am, and didn't get home til 5:30pm. It's a job, really. Thanks to families like The Castillos, and Natalia's Crew who think of those still in the fight. Hans scored a very cute Astros Build a Bear Dog from Chloe's toy drive and yesterday he picked out a neat toy too, from Natalia and Drew's crews. It was fun to have Elle in tow at clinic - everyone was happy to get to see her, she helped Hans hand out bags. Everyone said she'd grown so much. She has! She's creeping up on me in height and is already taller than one of our favorite nurses:) Love ya, Randa! She's such a sweetie, she refused a toy yesterday, she wanted to make sure there were enough for all the other kids.
We went in for counts, an office visit and an appointment with our Endocrinologist, Dr. Jeha. Hans' Blood counts are still holding out:
All good - just a bit lower than last week. They never know how meds will hit each kid, but we had been prepared for transfusions, but so far we are not going there.
For Hans, we transfuse red blood cells at HGB 8.0 or lower, Platelets at 20 or lower, and we put him on restricted activity when ANC is less than 1000 (preventing risk of infection). Our doc yesterday said to be prepared for counts to drop a little lower on the next round, but we shall see! Hans still has his hair, but, we have been told to expect it to fall out towards the end of this round. Today is Day 14 of 21 of this round.
That's about it for now. We've been having fun and I think we're all set. We just have to run out and get the kids some snow pants, because we've decided to extend our next visit to PA by just a couple of days to go up to the Pocono Mountains for some snow days.
- 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.