So - wow - sorry not to have posted again for a while-
To bring you up to speed - we were discharged Tuesday and had an enjoyable evening, checked out with the docs at CHOP on Weds, and hit the airport (we were affected by Houston ice/snow and clocked at least 9 hours in the Phila airport.) But we made it and were VERY HAPPY to be home. Thursday we had a day busy with unpacking, hitting Chili's with Sparrow Clubs and Elle's 4th grade Christmas Play to see her do her speaking role. It was VERY COOL that we were able to make it home for this! Of course she did great and it was fun to see all the kids we know shine! It would have really stank to miss it. Friday afternoon we were supposed to be in/out for a quick counts appointment, and then...
H's Potassium came back 'critically low' at 1.8 and we were rushed from clinic to the ER. Oddly enough, Hans didn't actually get a real Potassium intervention for almost 8 hours, but we did wind up getting admitted to the seventh floor (Progressive Care Unit) last night. Our little dude got 3 'Potassium runs' over the night and now his Potassium has recovered. We'll up his oral dose. He was pretty much all around tanking, so he is just now finishing up a red blood cell transfusion (HGB was 7.7 this am), and he has already received platelets (he was at 20 this am). He is also starting on GCSF - a cell growth stimulating factor to help his ANC (white count component) recover, which is now in the danger zone, dropping under 500.
Needless to say, this wasn't quite the weekend we had planned! What are ya gonna do?
This study we did at CHOP was a Phase I Clinic Trial. A Phase 1 Trial (in very layman's terms) tests the dosing limits of a drug. They are looking to see how much of a drug they can give before the side effects get too serious. As the trial goes on, the kids receive larger doses of MIBG in combination with a standard dose of Irinotecan and Vincristine. Hans was kid no. 20 (or so) on the trial aiming for 30 kiddos. We found out that he got 18 units of the MIBG, and that they started the first kiddo with about 6 units and they will proceed on up with the next kiddos until 31. We also found out that 18 is the same dose given when MIBG is just given on its own. In some ways - it is very scary to have Hans on a Phase One Trial. His Adrenal Insufficiency and his sensitivities can complicate things. Hans has been on stress doses of steroids for a while now, and it is likely that these stresses doses have been making him all too efficient at eliminating Electrolytes. So - we are tweaking a few things, and keeping him afloat!
Thanks for checking up on us - hope the next post is much more fun for you to read!
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.
2 comments:
Oh, gosh, I am so sorry our sweet little guy is struggling. I know that as the interventions begin to work Hans will perk up!
Elle's production sounds like great fun!
Onward and forward!
Love and hugs all around,
Aunt Susy
Glad you all are home! We all continue to think and pray for Hans and you all.
Love, Claire, Shaine & Patrick
Also Patrick's Mi Mi and Pops too
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