Friday, September 30, 2016
Rowan and I left home (Texas) 92 days ago today.
We have spent 70 straight days here in the hospital (Seattle).
He is Day +57 post-transplant #1.
He is Day -14 pre-transplant #2.
He has 6 days of chemo and 1 day of radiation coming up, followed by 2 more days of post-transplant chemo.
Today, Rowan had 8 different diagnostic tests done in preparation for the next transplant.
His ANC has been 0 for 21 days straight this time.
The numbers are enough to make your head swim!
The days are long...really long. Each blood pressure reading, every lab result printed, each temperature taken...make them even longer. Sitting here with his ANC at zero for this long, with him susceptible to EVERYTHING, has us on the edge of our seats. The knot in my stomach just won't go away. We have faith... A LOT of it. But, it is still hard to rid ourselves of the fear and anxiety of the current situation.
So, we try to find ways to cope. We journal. We pray. We draw. We play. We color. We make a paper chain.
Yes, a paper chain.
It sounds like a trivial thing. I mean, we used to make paper chains as a countdown 'til Christmas, or a trip to Disney World, for someone coming to visit, or until the next Iron Man movie comes out, etc. This time we made one to count down the days until Transplant #2. And each day at the end of rounds, I grab the paper chain and Rowan pulls one off, as the bone marrow team watches and cheers him on. It's getting smaller. Thank you Jesus...it's getting smaller.
Never has a paper chain meant so much to us. Never have I been so anxious to have him pull another link off each day. I cannot wait until he pulls the last of the chain links off. He won't be out of the woods yet, by any means, but we will finally be trying to get a graft in again. We will still need a few weeks after that for his counts to start coming in, we will still need to make sure he engrafts this time, we will still have to make it to day +100 or more before returning home to Texas. But at least on October 14th, he will have new cells going in. At least then, he will have a fighting chance.
We are trusting God with each link Rowan breaks off, and we look forward to Him breaking EVERY chain.
We are constantly repeating and praying Psalm 37:5...
"Commit your ways to the Lord. Trust in Him, and He will do this."
We are trusting that all of this is part of God's plan, just as Rowan's devotional today reminded us... "I already know"...
And in the mean time...
we just keep tearing away the chain links, faithfully.
When we got the news that the first transplant failed, our initial instincts were to fly everyone out here as soon as possible, so we could all be together. Brian and Ian already had flights booked last weekend, so they came first. The day after they left, Zoe and Rowan's home nurse Cindy flew out as well. Below are some of the precious, priceless photos I was able to get during both the "boys weekend" and then "girls week". It did our hearts, souls and spirits good to share some nice quiet moments together, regrouping, loving on each other and preparing to start the next battle. Things are pretty quiet around here today, now that everyone has flown back to Texas, but I'm so glad we have these photos and these memories to keep us going.
Hugs, walking laps, drawing, video games, games, makeshift movie theater in the room, and lots of love...
Coloring, drawing, movie marathon ("Step Up" 1 through 5:), hand holding, video games, naps, and lots more love...
It has been hard not having everyone together, but we are happy to have gotten time this past week with each of them at least. And their hugs filled Rowan's tank up quite a bit.
Hopefully, unlimited "Mommy love" will fill in the gaps for now:)