I can't believe how much Ryan is eating!! Today he wanted pizza - jalapeno, no less - from LaBella's in Halfmoon. Along with some boneless buffalo wings. The pizza was a 16 incher - loaded with jalapenos (I didn't fight him for a bite). He gave a piece to a nurse who stopped by the lounge where he was eating, and proceeded to eat all but 3 pieces. Then after we went for a walk, he picked up another piece. I suspect it was all gone by 3 pm. I'm waiting to see what he ordered for supper!
The beard hair started to fall out today. So we've equipped him with a clipper to buzz it off when he's ready. He's ready with his shades (thanks, Brian!) and a couple of hats. Incognito. We passed a teenage girl in the hall today who had lost all her hair. Ryan immediately felt a kinship with her. It's an exclusive club we can feel blessed not to belong to.
We went for a walk today - out to the parking garage where we could see out onto some green grass below without getting wet in the drizzle. Felt the breeze, talked for a bit. Ryan shared some of his thoughts about the future - hard to plan with everything up in the air, but he's sure this experience will lead him to something meaningful.
I didn't get the labs today. Somehow as a physician, it doesn't seem like I've made adequate "rounds" without seeing the labs. He has had some bruising - probably form the low platelets and fibrinogen. So he got another bag of FFP today.
This is Sophia's mom's last full day here. They sent shopping to get some things Sophia needs and have some time together. I left the hospital around 2 pm, and they came around 3 pm. Wanda's back was a lot better today, and Ryan and Tim gave her a blessing.
As we approach the next phase of his care, I'm looking for information from the doctors about screening siblings for compatibility to find a marrow donor. Meanwhile, I contacted our insurance company and found out that they don't cover donor screening, but once a donor is selected the insurance will cover medical bills associated with donation.
Ryan's expenses will be covered if he is at a "Center of Excellence" that participates with the plan. The transplant office at the insurance company will be calling me tomorrow with more details. One of Tim's co-workers from Malone whose hubby was treated for prostate cancer at Dana Farber in Boston says that the insurance also has an allowance for housing in a hotel for a family member while he is hospitalized there. That will be a big help.
Speaking of help - a special thanks to all of you have offered to help with meals and caring for the girls, etc. Right now, we're doing OK since Ryan is nearby and the girls are in school and we're trying to keep them on their routine as much as possible. When we are traveling to Boston this summer, I'll probably be calling many of you to take you up on your generous offers.
The sisters from church have been bringing us meals once a week, and several people have brought by desserts and cookies. Tim's office is sending home tons of food as well. And the gift cards for Ryan are greatly appreciated. Since food is my drug of choice, by the time this is all said and done I'll need to get a new wardrobe.
MeiLin's 5th grade concert was tonight. Very enjoyable. I am amazed that Mr. Yannuzzi can take fifty-six 10 year olds and in 8 months turn them into pretty good musicians!
We are feeling the results of the fasting and prayers. Ryan is holding his own with minimal side effects so far. Although he feels weak, he is able to walk. And we're all amazed that he is able to eat so much. The positivity he has is inspiring.
As Elder Wirthlin's mother would say, "come what may and love it" (complete article on lds.org - just put the quote in the search box). We are learning so much about ourselves and about life. Sometimes I feel like I could do without this education!
---Barb
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