Well Saturday (day -6) marked the crossing of the first dreaded hurdle of Will’s hospital stay for us. That was the end of the Thiotepa showers. The 48 hours proceeding that were both easier and much, much harder than we anticipated. We went through anger, frustration, sadness, laughter, bribery, pain, singing (yes singing),new languages, new curse words from new languages, wet towels, wet clothes, and a dozen other things I’m probably forgetting.

Day – 8 (AKA day 4)

6 AM brought us his first shower after we started Thiotepa. I have to shout out our nurses during this time as they did a great job of assisting and walking us through this process. The first shower our nurse led the way and showed us how to shower Will. Kim watched on and assisted with keeping his lines out of the way. Because he can’t have any adhesives on him during the Thiotepa, his central line is basically exposed during this and just sort of hanging in place while he showers. So the showers were always going to be a two person job. One to physically help him wash and one to hold the lines out of the way and guide the IV stand.

With each shower we also changed all of his clothing, bedding and redressed the bandage over his central line which consists of several layers of gauze and a gauze wrap around his body since they can’t tape it in place. After the first shower and a dropped shower head by Will that sprayed our nurse which may or may not have been an accident, Kim took the lead on the rest of the showers and I was on line duty, managing towels, clothes etc… Mainly just trying to look like I was contributing something to the whole process other than moral support!

It really doesn’t take a situation like this for me to appreciate Kim but I’m constantly in awe of her and its magnified during all of this. Somehow it makes me love her even more as a partner/friend/spouse/mother even though that doesn’t feel possible. I don’t think there is any way I could do this alone and yes you rise to the occasion but she is remarkable with all of this. Yes, like all of us she has moments of doubt in the quiet of the night. However in the heat of the moment she just does whatever is needed. I know we can meet whatever challenges we face because I have her to lean on. I can’t imagine trying to struggle through any of this without her. They say that God only gives you challenges that you can handle. Well just know that the challenges we are given are based on her tolerance level, probably not mine.

We repeated the shower process every 6 hours (6:00 AM, 12:00, 6:00 PM and Midnight) for a total of two days (eight total showers). We seemed to go through some dramatic emotional shifts with Will from shower to shower. The midnight showers were usually the worst as he is drained physically and just wants to sleep. The 6:00 AM showers would start off rough but morphed into some of the funniest with Will jabbering made up curses at us (Totato!), making jokes about seeing alternate realities when his eyes were closed and even a little singing which I was amazed at. Yes he is totally miserable but he is still finding a way to put on a brave face and little peeks of the Will we know and love break through.

I think it was after fighting with him through the second shower that I ended up desperately bribing him (he wanted cash, I need to see if I can get a recepit from the hospital for tax purposes HA HA) to get out of bed the next time and I think that helped some. But ultimately it was a team effort of Kim, Will, the nurses and myself to get through it all. The first shower probably took about an hour or an hour and a half to get through from start to finish (shower, dressing change, bedding change, etc…) By the end we had a pretty good routine in place and would finish in under 30 minutes.

The important thing through all of this is that despite the protest, anger and frustration ultimately Will had to be a helping participant to get through all of this. I can only imagine what he is feeling inside but he’s putting on a pretty brave face for the most part to get through it. The nighttime nurse shared that she had only assisted with little kids for this process (think two year olds) and I can’t even imagine being a parent of an infant or toddler going through this. Add that to the list of blessings to count. It can always be worse.

Day -7 (AKA Day 5)

Was another shower day but he also started up his next two Chemos, Busulfan and Fludarabine along with some supporting medications to help with the side effects. He also had to have constant lab draws to monitor and evaluate his levels to ensure the dosing was correct during the day. We were thankful many times for his functioning central line that makes that process so easy.

Unfortunately by the end of day the nausea and vomiting would start to kick in but he played a little more on his computer and built legos during the day when he felt up to it.

Day -6 (AKA Day 6)

The six AM shower on day six marked the end of the 48 hour Thiotepa shower marathon and we celebrated but unfortunately the nausea and vomiting would persist through the day. They have been administering a delicate balance of anti nausea medications that are helping but after throwing up everything he has been eating he has been pretty resistant to eat over the last twenty-four hours. Thankfully the rest of the day was pretty uneventful and Kim was able to go home for a quick break and bring Zach back in to visit for the first time.

I have to comment on Zach’s bravery through this whole process as well. We couldn’t do this without Zach’s support and willingness to push forward through life despite what is going on. Sometimes I have a lot to learn from Zach. Zach has some pretty traumatic memories of Alex in the hospital so it was a challenge for him but he was able to come in and see some of what Will is going through and that was good for all of us.

Day -5 (AKA Day 7)

That brings us to this morning. Today is the third of four straight days on the Busulfan and Fludrabine mix. He’ll finish that tomorrow and then go into three rest days from chemo in preparation for the actual infusion (transplant) itself next Friday. Will is pretty sleepy so far today and still feeling quite nauseas but has been able to slow down on the vomiting so far. Our goal is to just take it easy and get to the next stage of the process.

It feels like I need to end every update with a big thank you to all the well wishes, prayers, fasting, donations to COTA for WillPower, etc… and I’ll keep doing that as it’s all appreciated and needed. Its hard feeling like I need to be in three places/three people at once. I know I’m doing all of my roles at a reduced rate but its because all of you that are supporting us, big and small, that I can juggle that and be there for my family, work, etc… My thanks is infinite and I’ll keep saying it.

Thank you!