Josh got home with Drew last Saturday night at about 10PM. It was late, but I think both were glad to end the day in their own beds. We were riding the high of our great Stem Cell collection for a couple days! The doctor reiterated how well the harvest went, sometimes it takes 2-3 days to get what they need, and they got over double in one collection! Glory be to God. In general, the last few days at home have been pretty uneventful from a medical standpoint, which is great! We've been changing the dressing on his forearm from the IV incident where his skin is coming off, but without his central line, "all" we have to do with him is keep up on his medications and feeding tube chores. Which have been the one source of frustration. The tube has come up or been pulled out twice this week. Which in the hospital is a fairly easy problem to fix. At home though I have to take him to the ER to have it replaced. Anyone that has been to an ER knows how long it takes to get in and out of there, even with a fairly easy issue. But we got it back in, and all is well. Tomorrow now we report to our Clinic appointments to have labs drawn to make sure he is good to go for round 5. They will set up with the surgery team the procedure time to replace the central line on Friday. We will be admitted on Friday for that, and then stay overnight so we can start Chemo early on Saturday. This is the same mix of drugs we had for cycle 3--remember the one he got so sick on and I had to take him back in for fluids?--So it'll be 4 days, one bag runs for 2 hours, one for 4. Looking on the calendar that would put us done on Tuesday, but they talked last time about adding a day in hospital since the nausea hit a day later. So Wed would be the earliest we'd get out if nothing happens, pray it doesn't! For once we'd like a routine Chemo treatment! My brother is coming to help out this week. Again, so thankful for all the family willing to take vacation time to come and help us keep our family together as much as possible!
We've had a great time with all four of us at home. It almost felt like old times. Almost. Being home and getting back in the familiar has been bittersweet. Sweet for obvious reasons. Taking our walks together in the afternoons that we often did last nice weather season. Eating dinner together and doing bathtime and bedtime. For me getting them up and doing our usual breakfast of eggs in some form and cinnamon sugar toast, and playdates with old friends. All the old staples of our day feel so comforting right now. The only not so great part about having days that resemble our old life, are just the reminders that it isn't our same old life anymore. Medicines lined up on the counter morning and night for Drew, dressing changes on his arm wound this week, even Drew's appearance with his feeding tube and bald head, remind you that life isn't the same. And that it never will be. We have to go back this weekend and go through another round. Then all the big things we have still to go: The surgery to remove the tumor, the bone marrow transplant, the radiation treatments, immunotherapy....It takes a conscious effort to refocus on today, enjoy the moment, and rejoice over how far we've come already. And to find things to be thankful for. For example, the changes since this has all started hasn't been all bad. The everyday annoyances and setbacks to my schedule that used to throw off my whole day, and really affect my attitude, have lost their power. I have a new sense of peace, that everything will work out. A new gratitude for the daily work at home because I AM home to do it! The brother sister fighting that can grind your nerves by the end of the day are easier to handle because at least they are together!! My faith has become such an important part of every day as well. I know it's His strength and peace that are fueling me. And that is a great place to be!
Here's some pictures from home this week!
~Heidi
No comments:
Post a Comment