8-9-16

We are continuing to enjoy our last few days of our longest break from treatment. Although we did see the inside of a hospital at the end of last week, when we had to go into the Austin ER to have his feeding tube put back in. It had been a long time since it had come out, so I guess we were due! Also starting last week he's really shown a lot of interest in eating again! It started with a (small) bowl of mac and cheese, and he's been eating (sampling I'd say) whatever we are eating at meals. He'll likely still be on the feeding tube for the rest of his treatment because his appetite/stomach will continue to not be reliable enough to trust for his full nutrition, but it's great to see! He really is looking beefy to us too! Filling out in the cheeks, sides, even his little legs look thicker! It'll be fun to see how much he's grown at his exam at the end of the week.

Speaking of the end of the week, I've been getting some questions about what all his tests include and next week's chemo. So for the tests; between Thursday and Friday he'll have two different heart tests, a kidney function test, a CT scan, hearing exam, lab work and doctor exam/consultation. It'll be a busy few days, but hopefully at the end of the week we'll get a great report and be ready to check in Sunday night for our 2nd transplant. Then for the second transplant; it should look really similar to the first one, starting with day -7 getting high dose chemo. This round we'll get 4 days of the intense chemo that will do the job of wiping out his bone marrow, however this mix of chemo drugs doesn't require the baths every 4 hours! But this mix will very likely leave him with the high frequency hearing loss (probably rather do the baths...). It'll be administered for 4 days, then we'll have 3 days off, and then the transplant on day 0, Monday the 22nd. Then we'll watch as his counts drop and he really feels the effects of the chemo. We'll stick it out and be there for him until his counts come back up, or engraftment, whenever that happens this round. Last time it was on day 10, so we hope it won't be much later than that. We also hope that we escape without major complications again. Please pray for that too!

We'll pick up my aunt from the airport Saturday night who is staying with Molly next week while Josh has some work events in the evenings. Once again, we feel so blessed to have people willing to leave their lives and enter our crazy one for a time to help us out. I have had so many wishing us well, dropping off food, and offering prayers for this last intense hurdle in our treatment. I am so grateful, thank you. I think we've transitioned from feeling sad/upset about what is to come, and more just want to get it started and over with! Once again, its been great to be reminded what we are fighting for--our family all together for good, and a healthy Drew--that we are ready to get our game faces on and get this last transplant done!!

I lost my phone yesterday, we are pretty sure it is gone. A small thing, but still frustrating and disappointing. We are figuring out a replacement, and it will be okay. Another event that would have really shaken me a year ago, but now I know there are bigger things to get upset about. Anyway, I don't have too many pictures to share now, but here's a few I had posted to facebook from last week!

~Heidi