We have been down to TCH two days in a row now (ugh), but only because it was impossible to get an endocrine appointment on the same date as our clinic appointment. On Tuesday we went in for our counts check and office visit. Hans' counts are looking great. I'm very pleased that they are recovering so quickly. Hans' ANC was up over 2000, HGB 11.6 and Plt 254. Chemistries are remaining stable with his thrice daily Potassium Supplement. (These are big honkin' pills!)
We also went in to see Endocrinology - which Hans has to do a couple times a year. We've recently tweaked Hans' Hydrocortisone dosage. Hans needs to take this med for life as a treatment for his Adrenal Insufficiency. We have been giving him a stress dose of this med for about 10 days while the chemo is peaking in his system. Hans looks pretty healthy so we are happy. They are running some labs next week to make sure the steroid levels are okay.
One issue we are faced with is a lack of growth:( I think that's all part of Hans being on therapy for so much of his life. He has grown over the course of treatment, but he doesn't appear to be growing while on MLN8237. The treatment for stalled growth is growth hormone, and you certainly don't have to have a medical degree to imagine what growth hormone would do to the NB. Hans is filling out though, and I always remember what Dr. Russell said to me once early on in treatment, 'you've gotta grow out to grow up.' Just as long as that tumor's not growing!!!
In other news - we're just doing the usual. I've had training in the evenings so Kev's being Mr. Mom around here:) He has been going in early/getting home early to let me head out. And, Shawn and Ellen have been helping Elle with rides to and from soccer and it makes things soooo much easier! Thank you!
Elle's fifth grade year is coming to an end and she has a flurry of projects. She has been diligent with getting all her assignments done in a progressive manner. I think she has 4 or 5 major projects due across a two week period. It's pretty cute to see her being so conscientious about her work. She's a good student and I have been so thankful that she hasn't needed much in the way of help or direction at home because there have been sooo many times when I wouldn't have been able to do that for her.
As soon as I got good at taking and posting pics, I went to charge the battery, but left it on the counter, turned around and it was gone. Did Honey eat it? Scary! A new one is in the mail via Amazon.com. I'll keep on taking more pics, but my honeymoon of Hans posing for me may be over - he's holding out his hand again...
- 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.