Josh rebounded, on Thursday, August 2nd, he came home from the hospital, a couple days after he left the ICU. He was home for the first day of 2nd grade, kindergarten, and for our oldest’s 7th birthday. We are thrilled. His blood counts rise each doctor’s visit, which means the new marrow (stem cells) are working. He left the hospital weighing 200lbs because of edema in his abdomen and legs. On August 23rd, (four days later), he weighed 170lbs and today when he left for his appointment I could see his skinny ankles poking out of his high top sneakers.
The transition home post transplant has been difficult, but gets easier each day. To some extent, I was looking at the end goal as Josh home. I felt that when we walked through the doorway some semblance of normalcy would appear. I forgot that Josh left the ICU two days prior and was still sick, extremely sick.
No one discusses chemo brain, it feels taboo. In my head, I thought it might be like pregnancy brain, make you spacey. Chemo brain is officially worse than pregnancy brain. I still don’t know what chemo brain means to anyone other than my family because no one discusses it. Post stem cell transplant brain is definitely more than fuzzy. My brain was fuzzy, but Josh was a bit crazy. The first couple of days home, Josh was loopy, whether from chemo brain, fatigue, or medications, he struggled staying awake. He fell asleep speaking, texting, or watching television, and then woke up hallucinating and speaking gibberish. This was disconcerting, was this it? Was he going to improve? Did he have chemo brain? I don’t know.
Luckily, Josh’s brain came back. It came back quickly though he remains easily fatigued. Despite symptoms, he eliminated all medications that made his thinking fuzzy or unclear. Josh wants his life back. He wants his independence back. He walks every day and forces himself to eat despite everything tasting metallic, nausea, and stomach issues. He plays Rat-A-Tat-Cat (a card game) with the kids and eats dinners with us every night. He does this despite feeling awful. His central line will be removed Thursday, which is huge. The end of daily heparin flushes, transfusions, and hopefully chemo. He is doing everything he can to return to work and life. All we can do is be patient and let his body recover.
Since Josh is lucid again. His story is back to being his own and I’m not going to continue sharing it on the blog. He can start texting, emailing, and returning phone calls on his own. Please keep the prayers for remission coming. On November 2nd (Day 90), we find out whether the stem cell transplant was a successful. Today is Day 27. We must be patient, wait, and recover. We believe he will achieve a complete response. His body responded amazing to all the torture it has been put through and I believe it will keep rocking it.
Also, the above picture is of post stem cell transplant Josh. Who looks that good after a stem cell transplant? My amazing, loving, beautiful, and brilliant husband. I continue to be a super lucky woman.
Thank you for all the dinners, gifts, carpools, notes, emails, and prayers. We feel so loved by our community and thankful for everyone who has reached out to tell us they are thinking of us. We never knew we had so many people and we feel so lucky that we do.
KEEP PRAYING FOR COMPLETE REMISSION! XOXO