We just finished Week 4 of Consolidation. The week got off to a bit of a difficult start on Monday. Ethan was getting ready to go into the hospital for blood work and a likely transfusion, while his siblings were getting ready to head out the door to go to their cousins’ house for a sleepover before flying to Sunriver Oregon in the morning with cousins and grandparents (a highly anticipated annual vacation including skiing at Mount Bachelor, one of Ethan’s favorite things to do). Ethan wasn’t feeling so good and was emotional, while Caleb was crying that he needed Ethan to come with him. A lot of emotions as everyone was trying to head out the door in different directions. It was hard to watch Ethan have to watch his siblings head off to Oregon, and it was equally hard saying goodbye to Caleb while he was so upset that his big brother couldn’t go.
We all made it out the door that Monday, and the first two days of the week were long. Monday’s blood work resulted in a day-long stay at the Outpatient Infusion Center for a blood transfusion and Cryo infusion because his Fibrinogen was low (a clotting factor). The next day was also long (another spinal tap and more chemo), but Ethan seemed to avoid any obvious side effects and had a good rest of the week. I think that the rest of the family was in Oregon was on the back of his mind all week, but he didn’t let it get to him and we had some really good quality time together, with Steve off work for a lot of it. We got out a bit, read a lot and played many games, Dad and Ethan did some science, he enjoyed some low-key outdoor sports, he received a lot of attention from some special visitors, and the house was unusually peaceful without the sibling interactions. Ethan particularly liked the peace and while he missed Maddy and Caleb, he didn’t mind the break for a few days!
Steve and I really enjoyed our quiet time with Ethan. For the first six weeks, the meds seemed to take over the Ethan we know. This week he was feeling better and just seemed back. He was affectionate, thoughtful, social, talkative, wanting to do schoolwork for the first time, and so full of Ethan wisdom and energy. I’m worried about this week ending and chemo starting up and taking over again. While I was glad that Maddy and Caleb had a good time away and also grateful for our time at home with Ethan — the pictures of the 4 cousins on the mountain (and in the airport and building snowmen and reading together in the bunk beds) were a blatant reminder of everything that E is missing right now. I think that he handled it so well also made it more difficult for me to take in; he’s 7, he should be able to be with the rest of his family enjoying life and being a kid. For the most part, he’s taking this so gracefully, and my heart aches for him. When he was first diagnosed and overheard me talking about whether or not to send his siblings to Oregon with my sister and parents, Ethan without hesitation said “Mommy they should go even if I can’t, I’m different now.” His tender and accepting attitude has made this easier and yet so much harder.
Highlights of the week…
- Being surprised with Xbox One
- Going out to Zov’s (one of Ethan’s favorite local restaurants) on New Year’s Eve for a super early dinner
- Counting down to the new year with siblings and cousins on FaceTime. Grateful for technology — though it’s a bit of a double-edged sword. He was really happy to be able to count down with them and see them, but I think it also made more blatant what he was missing. At bedtime that night, he said, “I wish I didn’t have Leukemia and could be in Oregon.” A quick statement, and then moved on to planning for his big cousin’s sleepover the next. day. I’d have expected a lot more of those words to be communicated — again, amazingly graceful and accepting.
- Reading aloud The Hobbit with Dad
- Special time with some visitors, including cousin Kelly, Scott and Sandra, Davin and Sophia, Quinn, and Neri. Mom enjoyed friend time with Emily, Alison, Alli, and Anne.
- Thank you Kadins for the New Year’s treats, Robin for the super soft knit hat, and for the yummy meals that were delivered.
Heading into Week 5 of Consolidation…