Hi,
Wow - sorry - I never meant to be such a slacker. It has been a whole week since I posted... Well, Elle was off all week at Camp Casa Mare. She had a great time, but is enjoying the relative luxury of the A/C back at home, and, the remote, to watch a lotta World Cup. Sadly, we aren't looking forward to another USA game, since we just lost to Ghana. Shucks. I guess we'll be rooting for our neighbors to the south, go Mexico! Camp highlights for Elle included learning a dance, "The Jerk" from fellow campers. There were a couple family of deer with babies that the girls got to admire. Elle selected Yoga and Spa for her morning courses to round out her week of "Sports Fan". She said the food was incredible - with a vegetarian option every night. I thought that was great - (in TX! :)
Hans' labs have been predictably low this week. This right now is where he's at his low point of the cycle. What are we, Round 9 now? He's all done with it - and counts are bottoming out. No transfusions needed, but the HGB is hovering at about 8.8, ANC just dropped down to 230. We had another little wrinkle this week. I actually got a call from the Endocrinologist that his Plasma-Renin level was a bit low. This is a test they run along with his ACTH levels only a couple of times a year. These two tests check that we are actually replacing Hans' steroids to an appropriate degree. (We only have to run these tests because Hans lost both adrenal in resection surgeries - most NB kids don't have this additional burden.) The good news was the ACTH level was fine. That is great - because we really made some dramatic changes to Hans' Hydrocortisone dosing back in the Spring. He is now stress dosed on Hydrocortisone while he is peaking on chemo, over about a ten day period. He seems to be doing quite well with the adjustment, and I actually wonder if it is responsible for his growth spurt. It's just good to know we are not overdoing it. However - the plasma-renin showed that he is not quite getting enough of the other steroid, so we made a minor adjustment and will retest next week. Hans also had a slightly low Potassium, which I attributed to the steroid fluctuation, and we just started him back up with three supplements a day and he seems to be fine.
Anyway, Hans seemed to be pretty low energy this week. So, we really laid low, just had kids over a few times, and I didn't push him too much to get out and about. I have been working on getting donations and sponsors for the NB HOPE 5K Fun Run/Walk - all week! Wish me luck! Check out the sponsor tab at www.nbhopefunrun.com, if you think your company could help. I am also looking for donations for our Raffle. Let me know if you can help!!! Thanks:)
We leave for Philadelphia on Monday. Scan is Wednesday. Praying for a little bit of remarkable news!
Lara
About Me
- 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.
1 comment:
Thanks for the update, Lara!
Hans' resiliency is remarkable!
May all of the upcoming tests prove to be positive!
Elle, you are remarkable, too! What wonderful experiences you are having!
Safe travels!
Love and hugs,
Aunt Susy
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