Day +26. It’s Engraftment Day! The day when my doctors finally consider my donor cells to be successfully growing and making new blood cells in my body. I told you my donor would like me.
We began to see signs of engraftment late last week because my white blood cell counts were on the rise, an indicator that my neutrophils – a type of white blood cell that are vital for fighting infections and growing platelets that control bleeding – would soon follow. Sure enough, they went from undetectable last Friday and jumped to 350 on Saturday. By Sunday they had passed the big 500 marker to 650. (congrats to the 9% of you who voted for June 5! – especially to Julie Seifert, who was the only one to get it right on the calendar in my hospital room!) Yesterday morning I awoke to hear they were at 800 and today they dipped a little to 790, still well above the 500-gets-me-out-of-here mark.
After 36 days straight in the hospital, my family and I are so grateful we’ve met what Be The Match calls a “milestone.” Now my task is to prove I can get out of the hospital – that I can get off the IV pole and ingest all the pills that normally hang in IV bags, drink enough water on my own, and eat enough calories, a new quandary for my usual first-in-the buffet-line self. But with the help of those sweet little Ensure shakes you might see mocked on an SNL commercial or something, I’m trying.
I’m sorry I haven’t been the best communicator of this increasingly good news over the past week, but the move up in neutrophils hasn’t been reflected in how I’m feeling. I won’t go into the nitty-gritty, but mainly I’ve experienced some headstrong engraftment syndrome, where your bones ache and reel, you can barely peel yourself out of bed, and an assortment of other fun symptoms. I also had an unnerving reaction to a new drug on Sunday, which kept me laid up for a good day or two.
As of today, my mom has taken the lead in landing us a room at the Gift of Life Transplant House. Dr. Arndt is vehemently trying to get me out of here by Thursday. (Thursday!) “You’re past the launching pad, it’s almost blastoff,” she said this morning.
So what’s next at the Transplant House? Until Day +100, I’ll be recruiting committed caregivers (mostly my parents and close family) to stay with me while doing all sorts of the daily cares I would be doing in the hospital, plus three-times-weekly blood work and appointments at Mayo Clinic, and what I suspect will be several visits to the Pediatric Infusion Therapy Center (PITC) for random orders of fluids, blood transfusions, medications, etc.
There are definitely still many obstacles ahead – viruses to watch out for, graft-versus-host symptoms, strength to rebuild and more types of cells to grow. And I will certainly not be back to normal – I still have to abide by the “no fresh fruits or vegetables rule” and have acquired the “no going in large, public spaces” (like a restaurant) rule, the “wear a mask if you’re around a group of people”, and the “no going outside 30 minutes of Rochester” rule – but I’ll be losing so many rules, most important of all, “stay in your hospital room.”
Thank you for your consistent support even during my hiatus. Oh, and my mother will never be writing a blog entry again. Lesson learned.
To leave a comment,just click on “Comments” below this post. It will take you to a new page. Scroll to the bottom where it says “Leave a Reply.” Fill in your name, email address, and your comment in the boxes. When you’re finished, click “Post Comment.” It’s great to hear from you!