We have the first part of our plan. Thank Goodness! It feels awful to have news of progression and no plan to deal with it. I always say that as a cancer parent your Plan is your life raft. The time without one is pretty choppy waters. Our lovely oncologist and nurse practitioner came by today. We plan to scan Hans with both an MRI of brain, neck and spine, and an MIBG this week. Dr. Araz is looking into using stem cells if we need them. On Friday we will gather the facts from all three scans and make a treatment plan of attack. I was really concerned about things like low platelets and # of days since last therapy.... but Dr. Araz has assured me we will be fine. Hans' platelets have been about 50. Hans' tummy can't tolerate much right now. He is even taking his meds just one pill at a time. Usually he can down a mouthful. He hasn't really eaten anything in 7 days. They plan to hang TPN/IV nutrition tonight, it will run 24 hours. But, as I type this, he is eating some Ruffles Cheddar Sour Cream Potato Chips. He says he is hungry, and he has asked his daddy for some Popeye's. Kevin and Elle are on their way back tonight. Kevin will go back and work Weds/Thurs and be off again to join us for the weekend (if we are still here!).
Elle is done with school Thursday. Roxie is driving down to be with us tomorrow! Elle brought popsicles to the nice kids at Warren today. So sweet. Hans had wanted to come to school one more time and hand them out. He has missed a lot. He has barely had any school, computer class or speech therapy in the month of May:(
Rest in Peace, Sweet Ava! This dear girl lost her 3.5 year battle against the beastly NB last night. Bless her sweet little family. Jack, Olivia, and Isabella have also been thrown back into the ring in difficult situations. What do we make of all these gorgeous, lovely, regular, super kids all in the fight for their lives???
Thanks for checking up on us. Lara
8 comments:
SO glad his appetite is returning. That is awesome, good news! Love, grace, prayers to you all! Wendi - E'burg!
WHOO HOO...so glad food is once again appealing, Hans!!! Bring forth the Popeye delights!
Love the Green Lantern dude...you are quite an engineer, Hans!
Elle and friends...you are inspirational!
Stem cells and a plan just around the corner also sound grand!
Glad a bit of "space" is allowing energies to gather strength!
Sweet Ava and her family are held close with love.
Sending love, hugs, and smiles...
Aunt Susy
So glad there is a plan in place. GREAT news!! I had to email Araz about when to schedule Tyler's MRI and I told her how much we both admire her. Even when she's not on service, she stops by the room which I appreciate! I told her to take good care of Hans as I knew he was inpatient :-)
Thanks for updating! You have been on my mind so I'm glad to hear that everything is in place.
With love and hope,
karen
So glad there is a plan and that Han's is up for some potato chips and Green Lantern building. Our hearts are with you all.
The Hutchisons
I can see 2 super heroes in that picture.
nice to have a plan and much better to hear he's hungry and eating!
Congratulations to Elle on completing another school year - she's such a trooper!
Yea for the Green Lantern!
Hugs,
so nice to hear you have a plan. even better to hear that Hans is hungry and eating!
Congratulations to Elle for completing another school year. She's such a trooper!
Yea for the Green Lantern.
Hugs,
Peace and Love to Ava's family; Hope and Strength to Olivia, Jack and Isabella - Prayers to all.
So glad a plan is forming and Hans is starting to have a little Gatorade and Popeye's!
Elle, you are a wonderfully thoughtful young lady, and such an inspiring source of support to Hans. :)
Pat wanted me to ask you how to get a package to Hans at CHLA....
Love to all,
G'ma Stephanie
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