So, I thought I should fill you in a little better on the heart stuff... I have made contact with Dr. Russell and she is going to set up an appointment with a Cardiologist and she's ordering a special kind of Echo. What happened was Hans' Echo function has come down significantly over the last three tests in Jan, April and then June. From dead-on normal range, to below. But, we are assured by Dr. Mousse, who co-chairs the ABT751 Phase II Clinical Trial (open for kids with measurable disease), and who carefully pulled all of the files of kids on the trial that had similar patterns on their Echo, that any decreased function was fully and completely reversible. So this is our action plan:
- retest the echo (I hope this happens within a 2 week time table)
- hold the ABT751 until we get results
- if the heart function increases, we'll restart the ABT751 at full dose, and repeat an echo after 2 rounds
-granted the second echo looks okay, we'll go ahead and continue 2 more rounds before returning to Philly for quarterly scans and office visit
- if the heart function remains decreased, we'll likely find a med for that, and restart the ABT751 at perhaps a lower dose???
-However I'm a little nervous that a Cardiologist will take one look at this pattern and recommend coming off the ABT751. Wish it was that easy! Wish there were a handful of other options for keeping kids in a second remission!
The thing that concerns me right now is that our plan is up in the air. I don't like having things up in the air. I get worried that things will drag out farther than the time line at hand. I'll be a nervous wreck if two weeks have passed and we don't have a new plan. But, for now, I can almost get on board with this two week vacation from chemo. It'll be nice to have a side effect-free Hans to hang with!
It does make me a little sad to think that maybe Hans wasn't up for much action that past week because his heart wasn't pumping well enough, and just using his toe as an excuse...
Speaking of Hangin', Hans got to do some professional hanging with all of Erin's big-boy buds yesterday, as we were able to show up in Bryan, TX for Erin's Dream Lanyard Workshop. I had to drop off Elle for a weekend in Austin, at a drop off spot sort of out that way, so Hans and I decided to traingulate a trip to Vickie's to get in some good Willie/Uma/TedE time and he played Wii with the big boys. It was impressive and heart warming to see all of these BOYS show up to bead in Erin's spirit and honor. There were at least 5 or 6 of her guy friends, 3 girl friends, and a lot of hip mamas there to bead. How cool to be a part of it! I wish I would have had Elle with me, but she's off for some fun with her friend Emily.
I'll post some pics of our trip as soon as I can. I think we spilled something on our camera, and I'm not sure if I can revive it!
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:
Keep the faith. John had a terrible time with his heart about six years ago and yet he has experienced a full recovery. He remains on heart medication that allows his heart to strength, but the cardiologist has given him a clean bill of health for a number of years. And he remains as sassy as he ever was!
Hello! I am so very glad to learn that the heart concerns are well in hand!!! I say....May they be gone!!!
The photos are darling...thank you, Lara!
My love and hugs to ALL!
Aunt Susy
Post a Comment