It feels like I just updated, so I know things must be getting better around here.
We finished Radiation yesterday - wow - 20 days of appointments and visits! I have to admit - - Hans and I keep pouring over the calendar...so many days (especially weekdays) we've been in the hospital, clinic, radiation, something dating all the way back to July 13th! That's pretty much 2 months straight.
Now we get a little breather. We are excused from all hospitals and clinics until September 19th. We'll do a third round of Irino/Temodor the week of the 19th -23rd and follow it up the next week with a full battery of scans. We'll do an MRI of the brain, a CT of the head, chest and abdomen and an MIBG, maybe bone marrows as well. Our doctor and the insurance will fight it out about the PET scan. Apparently the insurance feels it's "experimental" for Hans and Neuroblastoma kiddos to use a PET scan for disease evaluation. Our doctor explained that she'd like to see whether Hans is becoming somewhat less MIBG avid and that the PET could be a window into that. Our Insurance did, however, fund his Temodor. Thank goodness.
After scans, we'll sit down, look at trials, consider all options, and decide our next move. I don't know what we'll do but all available options will be on the table. It is interesting timing right now as there are some interesting options starting to open up.
Hans had a little accident yesterday. The cat (Black) hopped right in front of him and Hans tripped and wound up hurting his little foot:( We are totally bummed that he has to hobble around over a silly accident in the days that we get to be home in a little bit of recovery. But, that's the way it goes sometimes, I guess.
I'll try to keep posting twice a week even though I hope not to have anything too medical to report for a week and a half:)
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.
4 comments:
Hans' 10 day break is well-deserved! You can settle into your new home...and settle down that frisky Black!
May his foot injury experience a rapid recovery as the added rest and TLC works its magic!
Thinking of all of you with love and hugs!
Aunt Susy
Glad you all get a break for the long trips, clinics and hospitals...that's great!
Darn cat! Maybe the swimming pool would be good therapy for Hans foot...it's just plain good therapy for everything, in my opinion. Especially when you have a supersoaker to aim at teenage girls :)
Love, hugs and prayers
Aunt Holly and Uncle Michael
Whew, girl! I bet you guys are glad to be home for a bit. Been thinking about ya'll and sending love your way all the time. The girls miss you terribly and are planning our first MNO since school started. We all don't feel the same without you coming out to play with us. Love and hugs!! Vicki
Hey there! Just checking in--hope you've had a restful week with no hospital drama! I'm taking no news to be good news. We're thinking of you guys!!
love,
Sarah
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