Hi guys,
Sorry I left you hanging after Thursday's visit. It was FINE! Hans numbers are looking good, for the most part. His Hemoglobin is just a bit high. No big deal, I guess, like 14.3, when normal range ends in the 13's. All the chemistry's that can bother us are looking good. So, I guess this means that when we made the adjustment to his Hdrocortisone and Florinef dosage a couple of months ago it has done the trick to keep his sodium, potassium and hemoglobin in normal range. How nice!
Otherwise, the docs were very pleased with how Hans has tolerated these last two rounds of Accutane, especially after the fiasco of the first three rounds. It was all thumbs up. He is gaining a bit of weight, up to 14.3 kgs, but not doing much with his height. I guess in a couple of months I can start seriously bugging endocrine about this. Basically they don't know what all they've done to him in Bone Marrow Transplant... The wonderful and somewhat unbelievable news is the plan from here on out: Get Hans through this Round of Accutane, bring him back in for scans (just the CT and Bone Scan) in early May, and then no appointment for three months - when we scan again! Whoa! I literally asked the docs "You mean that's the plan even for Hans?" Since we've had so many unexpected problems, I actually thought they might still want to check on him monthly for counts... They just kinda smiled and nodded, and said that he does need to follow up with Endocrinology for life, but he only goes there quarterly right now.
Hans had a little party over here with a few friends to celebrate his play structure! It was pretty fun :) Hans has recently become a HUGE Power Rangers fan, and he was calling his little party his "Power Rangers Mute Force Super Marber Dino Adventure Party". The name of the party was just about longer than the guest list.
So, we started him on Accutane yesterday. We had a funny weekend because after Elle's soccer game on Saturday (go Dragons!) I got a little bout of Vertigo and I was literally on the couch from 9:30am - 5pm, feeling seasick! Crazy! Kev was golfing with a couple buddies and the kids were both so sweet about letting me rest, I think they knew it was all I could do. But, bummer, we didn't get to hit The Woodlands Earth day festival as planned. At least we were all better for Elle's Girl Scout Olympics on Sunday. She took Gold in the three legged race with her friend Kae! So cute! And then we joined Kids Unlimited at the last regular game of the season for the Houston Aeros (minor league hockey). It was pretty cool - the Aeros presented Kids Unlimited (a cancer kids foundation - basically a group that focuses on providing outlets for fun for pediatric cancer families), with a check for 5K last night!
But, ugh, Elle has had a stuffy nose, and then last night I noticed Hans has a bit of a low grade fever. This is a potentially scary event with his Adrenal Insufficiency. So - we went ahead and dosed him with stress dose Hydrocortisone and
are giving him Tylenol. Now, I'll call the clinic this morning just to make sure they want me to proceed with the Accutane, or wait until the fever passes...
Okay - that's it for now. I'm hoping to get pictures up soon.
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:
I am just SO HAPPY TO HEAR that all systems are go in the best way possible. Hopefully from here on out only the "quarterly upkeep" visits will intrude on your lives. Please tell Hans to play outside for me, too -- it's still so very cold in Chicago! Please love your Texas spring for me, too.
xoxo
Erin
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