About Me

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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.

Thursday, May 19, 2011

home


I got an easy pic of Keiran but Hans was dodging the camera in the registration area...

I think I left you hanging. We've been home since Wednesday night and Kevin is now here with us! The news: Dr. Maris said there was a "very faint slight positive" read on that one spot on the skull on the MIBG scan. I think it's about as little NB as he could have (I could be totally wrong on this - maybe he could have way less NB, but that's how I like to think of it). They also had some WONDERFUL news that they are going to petition the FDA to amend Hans' scan schedule. I'm hoping and hoping that we can go back to scanning in Philly every 4 cycles or 12 wks instead of every 2 cycles or six weeks! That would be just amazing and amazing timing for our move - we'll be farther away and the trip will be harder. I hope to find out next week. Hans goes in for labs Wednesday and if he makes counts he is to start Round 24 (?) of MLN8237 on Friday of next week.

There were two little bits of bad news. Hans had awful Stage 5 mouths sores this round. It has been getting in the way of what he eats - which is actually sort of scary for Hans on two fronts: growth and risk for hypoglycemia. The mouth sores are better now, but he brought home a pretty rough cold from the plane!

Meanwhile - we have been enjoying many little get togethers and parties of Spring! It's been fun, and it does seem like perfect timing to make our move. We close on our home out there May 27th so Kevin will have Memorial Day Weekend to get a start on the place. The movers pack us up the first weekend in June and we close on this place June 8th!

I have posted Hans' Make a Wish playstructure on Craig's list and Woodlands Online. If anyone is interested, please email me at kevinandlara@hotmail.com. We will put proceeds from playstructure towards Hans' diving board for our pool and to 'do' his new room... he'll get a second wish out of it!

3 comments:

Anonymous said...

amazing news! it must feel pretty awesome (except for those crummy mouth sores) good luck with the fda thing.
xojana

Anonymous said...

La - so glad you two are home with little drama. I would think the play structure would go in a minute! I'm keeping fingers crossed that you can go the longer time period to CHOP - that will be about a day and a half trip each time.....gotta go...love you all, pl

Anonymous said...

So long to mouth sores, Hans!

May the FDA choose wisely!

Your move has arrived...much to do! It will be DONE before you know it!

Love and hugs,
Aunt Susy