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.

Tuesday, May 15, 2012

Antibodies Round 1 Day 1

Well, Day One was a doozy.  Poor Hans - he had to get an IV placed and that is something he just doesn't do anymore.  He has had his Port au Cath for 4 years now and normally doesn't have to deal with an IV.  Hans has excellent coping strategies for all the procedures he does on a regular basis, but he has a lot of anxiety about procedures he isn't used to handling.  It didn't help that it took THREE tries to get the IV in:(
The Antibody (Ch 14.18) is incompatible with the morphine, so he needs two separate lines.  He actually has an additional device placed, an insuflon.  We can inject the GMCSF shots right into the insuflon and save him a poke for each dose he is to get for two our of every 4 weeks.  There's a lot going on!  Hans is hooked up to a continuous IV morphine drip with self-control button and he is being monitored by pulse ox, HR monitors and BP cuff.  He's all weighed down.

100 ml of the CH 14.18 goes in per day for four days.  They tweak the rate according to what each kid can tolerate.  They start at 5 ml/hr or a 20-hr transfusion, and try to bump it up to 10 ml/hr or a ten hour transfusion.  Hans did well with the 5 ml/hr and started to have some trouble when it bumped up to 10ml/hr.  All day they were tweaking the antibody rate and the morphine dose.  Antibody is painful because it is a foreign substance.  I think they got him to a semi-comfortable spot. The afternoon was the worst. I've also heard Day Three is the worst overall.  We'll see how it goes.  It is nice to have my mom here!  Sort of a two-person job the first time around, at least.

Hans' IV is in his right hand.  And, he's pretty much knocked out cold since all the meds started!  All that adds up to not so much Lego building. That's too bad because we went in on the Death Star with my mom!  He'll get to it one day.  I think it was honestly a little bit much for Antibody Therapy.

9 comments:

Anonymous said...

Being with you from far away !
Love
Fabi

Kate said...

Antibody treatment is soooo tough and my heart goes out to Hans. Hoping you all can hang in there and he won't be tooo uncomfortable. Ultimately praying they do their job!!!!

Charon said...

Thinking of you all. Praying for minimal pain. Hang in there! Let Hans know something from his Wish List will be coming his way soon!

Love, Charon

Anonymous said...

Oh, STINKO!

Wishing Hans and family easier times ahead!

Sending BIG love and hugs...you are in my heart every second of the way!

Aunt Susy

Neil Hutchison said...

Hi Lara...
We think of Hans all the time and loved your very sweet Mothers Day post. Please give a huge hug to Hans from us...

Neil & Margot

Anonymous said...

Thinking of all of you
Pat k

Anonymous said...

Thinking of you all so much!
Sending lots of love and strength.
xoJana

Anonymous said...

Lots of love, prayers and hugs to all of you going through this! We'll go check out the wish list and send something to the house.
Hang in there!
Love Aunt Holly and Uncle Michael

Kim Tyler said...

I hope this goes by swiftly and with minimal pain for everyone. It sounds like a major challenge. Thinking of you every day, and sending love!