Courage for Claire

Day +44

WBC- 4.6
Hgl- 10.6
Hct- 33.2
Plt- 103 (!)
ANC- 3.3

I'm a little late with the blog this week. I think I have a case of Januaryitis, combined with a smattering of PTSD. We went to clinic on Monday. I really like the bone marrow team, and our appointments have a different feel than our straight up oncology ones did. We always like seeing our nurses and other friends there. Things went as usual. Vitals, blood draw, central line dressing change (Claire does not like that), then this week we had a one hour infusion of the drug pentamidine to protect Claire from various illnesses. It lasts for a month and makes it so she doesn't have to take Septra, a very large pill, and she's always on board with one less pill. She is gaining a little bit of weight (yea!) and they are hoping to take her off TPN (IV nutrition) soon. I then asked our nurse practitioner D if, when I think Claire is doing great, she is REALLY doing great. I mean, should she be having struggles if this is really working for her? Or is it ok to be improving? Isn't it sad that my mind works that way? That I am almost afraid of things getting better? D answered that yes, she really is doing great. That she would go back to the team and say, "Claire looks awesome!" and everyone else would go, "Yes! Claire looks awesome!" without any subtext of "shoot. Claire looks awesome." We talked about medical theories and what the future looks like. I asked if it would be reasonable for David and I to plan a trip for our 30th anniversary, which is after the 100 days. She said that it is indeed reasonable. I hope I can convince myself of that when we are in NYC this spring.

You know the phrase, "It takes a village?" Well, we have a village. A very large village, and we couldn't feel more blessed. I mean, kids still ride their bikes unsupervised and knock on their friends' doors to ask if they can play in our neighborhood. Crazy good, right? And friends and neighbors have been leaving little gifts on our doorstep every day counting down the 100 days. They have been meaningful, lovely, funny, yummy, generous, and entertaining. But our village extends beyond that. Claire has received packages in the mail, notes, letters, prayers from far and wide. Even our medical team found an assist program for the drug Desatinib so we will have a $0 copay. (This is a drug that costs $10,000.00 a month, and it is January, so we haven't met our deductible yet. Most medical bills can be paid over time, but they won't let you take drugs out of the pharmacy unless you pay the full amount. I expressed concern over what card I would put the $10,000.00+ on for that and all of the other drug refills we need next week, and the team got right on it for us.) I really love my village. Thank you.

So, Claire was watching Guy Fieri on Food Network, and he was eating octopus at a SLC restaurant called Aristo's. It was pretty early when we left clinic, 11am, and the place was almost empty, so we decided to chance it. (I didn't need much convincing; it's one of my faves.)