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Cheers, everyone!
What a milestone day! After a white blood cell count of .7 yesterday (and more discussion of "putzy cells" from the doctors), we awoke to the lab test report today of 1.8! Also, Travis' ANC (don't even ask - I wouldn't know where to begin) was at 950 (below 500 is extremely vulnerable) . The doctors and we were thrilled! So today was Travis' first day in one month of being able to have nurses, his teacher and even Spencer in his room without masks! And to add even more excitement, Travis was allowed to LEAVE HIS ROOM (wearing a mask) to walk to physical therapy on another floor.
Picture this funny scene - I had just returned from my 2 hour break (Joe and I trade off each day - shower and errands) while Spencer is in school, and had bought Travis' requested Halloween costume -- a gunless cowboy outfit -- with the indulgence of real cowboy boots. So he, of course, had to immediately try it on, and promptly marched down the hall - with IV pump attached and trailing and mom agrinnin" - with his spankin' new boots, cowboy vest and bolo tie (we're saving the cowboy hat - thank you Doug and Reva - and chaps for the real Halloween debut)! Let's just say he was a real head turner in the HOT Unit! Travis is so popular with the nurses that they all were congratulating him on his stylish debut. He was "hot!" . It was F-U-N-N-Y. We were higher than a kite.
Travis' energy saw him through 30 minutes of playing basketball, catch, treadmill (2 min), "zoom ball" and the walk back to his room, where he zonked out for nap. This was after a bit of moody rebellion at having to take some meds and do yet another brush and swish. HELLO Steroids we've been warned about the moodiness side-effects. Had avoided that pretty well so far. I was actually laughing (not so he could see), because Travis' nature is truly so sweet, that to hear such nasty, angry tones come out of him is SO strange. Fortunately, we got him to cooperate before he flopped on the bed to nap, and the mood passed. Later - another "mood" which I diffused with the old ventriloquist vaudeville humor act - playing Travis "nasty" and Travis "nice" in a conversation together. Earned a laugh and rolled eyes - then he took his meds! Ahh, what we parents won't do
After his nap, Spencer and Joe arrived, and the three Unmasked Cabballeros (I call them The YonBoys Cowboys) proudly strutted their stuff in Travis' room (Joe had boots already - Spencer's were the other indulgence today! WAY CUTE.) I was Queen Mother in my slippers.
Other than that, Travis' belly has been bothering him (possibly "Gut-GVHD", and has had skin-GVHD, itching, rash and redness and has "soreness" - maybe muscle soreness? No fevers today. Still on IV nutrition, tho eating a bit more each day now. He is still limited to the five family members (Joe, me, Spencer, and my folks when they are here helping) in the room, as well as the medical staff, of course. They've told us to limit his time out of his room to only very early or very late hours, to avoid contact with others, and that if he's content to be in the room, to just stay there. They explained that Travis' immune system is that of a newborn baby now, and that the risk of catching chicken pox virus, cold germs, etc., is very serious. So we'll clearly be sticking close to "home" (the hospital room) for some time yet.
Other than that, we're continually adapting to life here. Spencer will have his first schoolmate play date here next week. Big milestone there! He's normally pretty reticent about those. So we're thrilled at that, too. Joe and I continually work on communication, as we have such little time together. So we document almost EVERYTHING in a notebook in Travis' room, to ensure continuity and quality of care (Thank you Dr. Dave Brottman!) and speak shorthand with updates on Spencer's school and how we're doing. It's not abundant conversation, but we're managing pretty well.
I had about 24 hours of wonderful company with my wonderful lifelong friend from Duluth, MN who was here. (Unfortunately, the boys each want to be with us, so Joe and I weren't comfortable going out on a date or anything. The date was with Spencer, Steph and me.) Any friend who can evoke surprised, food-spitting laughter really knows how to distract a stressed out Mom! And boy, did she ever. As usual. I wish she could have stayed longer. THANK YOU, STEPH! I'll never forget our time together!
So, that's the word from here. Celebrating counts and milestones. Worrying about the rest of the discomfort. Still taking a day at a time.
Love from us, Melanie, Joe, Travis and Spencer