6-21-16

Saturday took us to see the Twins play the Yankees! It was a little hot before our seats were in the shade, but the kids loved the experience. Molly loved the cotten candy and face painting, Drew loved the popcorn and atmosphere. It was a great day, even if the Twins couldn't pull out a win! Sunday then we got prepared for the week to come--laundry, groceries, and packing. We did get a family walk in before it got too hot, and I made a "like Mama makes it" Sunday dinner of beef roast, potatoes, cooked carrots and real gravy! Five o'clock came too quickly and it was time for Drew and I to leave for Rochester.

After we got all settled in, it was time for bed. Yesterday, Day -7 as they call it (Day 0 being the actual stem cell transplamt following all the chemo), was the start of the high dose chemo. It drips for about 2 hours, and they got it going around 11 a.m. And so far he's doing well, full of energy and spunk! It's still pretty early, the nasty side effects are probably still to come, but we are taking each day at a time and enjoying his antics! The killer so far has been the protocol with this high-dose chemo. The days we run the Thiotepa, he has to be bathed every 4 hours, because his secretions contain the high-dose chemo and if left on his skin for any longer would give him chemical burns. All of the dressings, and stickers on his body have to be removed, the skin cleaned, and reapplied every 4 hours as well. The first couple were all smiles and splashes, the midnight and 4 a.m. ones, not so much. This will keep up while they run the Thiotepa these first three days, and then for 24 hours post. On Wednesday, Day -5, they'll add another chemo drug that we've had before, and continue that until Day -2. Then a day of rest before Day 0, our transplant day.

The extra weekend at home was great for everyone, and even for me after I got over the change in schedule. Flexibility has never been my strong suit, but I'm working on it! I feel like I was able to enjoy the time wr had together, and come into this more positive and focused on the task at hand. And while we've been here I've been pretty busy learning the new unit, and keeping Drew entertained on the smaller wing! We again thank everyone for the prayers they are sending us. In the spring Molly's School sent home a paper chain of prayers that each class put together for Drew. I hung them up around his room, so he is literally surrounded by prayers this whole phase. It is a great visual reminder of all of the support that we have!

Molly is doing the Vacation Bible School at the church associated with her daycare, so she has that fun activity this week! Josh is taking off Thursday and Friday, so we'll switch out Thursday. Then Molly and I will go to Iowa for my parent's hometown celebration, Corn Carnival, for a long weekend. I am really looking forward to the break, as I haven't been back to Iowa since Christmas last year! I told myself no matter how tough it gets the next couple days, I just have to make it until Thursday! I think that will be the key to this whole phase of treatment, taking things one chunk at a time.

~Heidi