Hans and Kevin trying on their costumes back in August!
Hans and Honey trying on Halloween Costumes, with Uncle Dean
So, I figured I'd at least post pics of the try-on sessions. I didn't get to even see Elle try hers on - that'll have to change!
Hans is still inpatient. He's still got fever:( It was getting better, but he JUST NOW spiked another 103.2... Yuck. His ANC is taking quite a while to recover...in fact his white blood count is so low that he doesn't even have one yet. He is not eating, and he's
having low Potassium issues. It's like a trifecta of bad factors. His mouth sores are bothering him, which plays into the not eating. He has some new issues too. His urine is showing a few things it shouldn't be... blood, ketones and protein. I guess they are keeping a close eye on him. They've upped his fluid intake. He was sitting up yesterday doing another HUGE Lego Set. (Thank you Santa-Daddy.) Kevin's becoming such a spoiler I think I'm just gonna start calling him Santa;) He was awake all day playing and doing a little set, but as soon as he finished, the fever spiked and he is now resting/crashing. I don't even think I mentioned that he needed a blood transfusion as well as the platelets the other day...
I really just don't know what to say about the stem cell harvest. Might not happen this time around. We are not making counts and he needs to get better anyway. We shall see.
In some really remarkable, fabulous news, Hans got a clean bill of vision from the Opthamologist this morning. I actually heard them chuckling and practically high-fiving out in the hall after they examined Hans. His vision is 20/20. The physical eye exam was as if nothing ever happened. For a recap, early this summer Hans had fast-growing, terrifying, large bumpy NB tumors growing up and out of his skull, as well as tumors pressing into his brain. These tumors caused pressure on the optic nerve which resulted in double vision for about two months. We treated Hans with 20 days of radiation and some three rounds of Irinotecan Temodor and the tumors melted away. It was truly remarkable. "As if nothing ever happened."
I'm going to thank and repost. That's what I'm all about for the next week or so. Thank you kind donors, friends, family, and friends and family of friends and family! You have posted more than $7,000 of support for Hans' Journey to the CNCF. Thank you. Check out his park here. NB families can open a park of their own, if that's your cup of tea. Thanks for visiting Roxie's Scarf It Up! and ordering those scarves. 15% of internet sales thru Nov 10th will go to Hans' Park. She is really pleased with the number of orders coming in. Thanks all around. At times like these, when we have spent 54 of the past 108 nights in the hospital, it just feels good to feel your support!
4 comments:
OHHH, WHOA! Hans, Kevin, and Honey are a frightful trio...Uncle Dean is wide-eyed! Way cool costumes...great idea Hans! A belated celebration would be fun!
Not feeling well JUST STINKS!!!! Aunt Susy and friends send love and prayers for better hours and days ahead!
A clean bill of health for your eyes is fabulous, Hans! Way to go, brave one!
SNOW here...brrrrr!
Thinking of you with BIG love,
Aunt Susy
Sending love and prayers for peace. For all who have ordered scarves...they are on the way, and 15% will go to the CNCF in honor of Hans!!!
Thank you!
Roxie
A huge costume party is definitely in order!! Great pic's!
Love, G.Kathy & G.Dale x0x0
Hey Lara,
Just had a thought. Would it be helpful to your family to have me come down and be a surroogate grandma for a week or so? I could cook, clean, drive people around, run errands, or do numerous other possible things that might be useful to a family with as much stress as yours. I've also been a Hospice volunteer, so I'm aware of how traumatic illness impacts everybody. Now that you are in CA and I am retired, it would be easy for me to offer that. Just thinking. My heart is so much with you all .....Let me know...
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