Baby steps

I've been horrible about updating the blog I realize. The day just suddenly begins then ends, and not much happens in between for me, but, I have been doing a bit more week to week.

Things are going right on schedule I guess. I'm doing a tiny bit more each week. An errand here and there, getting up in the a.m. before the kids go to school, going to the kids home games, not falling asleep every night at 8:00, I even went to the kids assembly, talent show and church this week all masked up. These are baby steps but improvements. I'm feeling pretty rested too, but I do crash hard at night.

I've got subtle GVHD going on. Little skins rashes, but nothing defiant enough that they would biopsy with dermatology to confirm. Some mouth and dry eye things too. Just stuff ...... I'm really kind of wishing and hoping for a bit of a more defining rash that they could say, "oh yah, that's definately GVHD". Then we could feel more confident that the GVT (graft vs tumor or lymphoma in my case) is most likely happening as well. I mean it happened last time with very little GVHD and got the GVT, BUT it also came back. We'd just like to see something a little more defiant and aggressive. But, I'm right in that time zone of when GVHD happens and my level of immune suppressants are constantly changing.

It always seems like there's just one more thing though ..... and that's what it'll be like for the next four months too. I finally tested positive for this virus, CMV that I've just had in me but hasn't surfaced, that they have begun to treat me preventatively with a pretty strong anti-viral med., meaning they don't want it growing .... nip it in the bud. Unfortunately the side effect to the med. is lowering my counts. Going untreated can cause some serious complications to the liver, lungs, etc.... Hopefully oral meds will do it without having to do IV.

Then, I get a call from Tuck's teacher the other day letting me know fifths disease has been going around and in fact two kids from his class have had it. No big deal for kids, but me? Great! I bring that up to the Drs, and the quick response was "Papilovirus ..... yah we don't want you to get that."

AHHHHH!!!! I just want to fast forward about 6 months. But baby steps, I'm already at day 60. That's at least closer to day 100 that day 0. :)

Kids are doing great. Sam, with chorus, and Griff with his class, sang at their assembly Friday, Sam and Griff both were recognized for this running club through the Burlington Marathon they've been doing, Tuck was "passed the crown" (or microphone) as the announcer for next year's assemblies. He also was recognized for playing with the Vermont Youth Orchestra this past year, a math award, and the Vermont Fitness Competition he was just in at UVM. Pretty cool!! Then that afternoon was the talent show, and since Tuck played his sax and violin last year, he wanted to show a side of him others don't get to see. So he and Troy put together a 3 min. video, all set to rockn' music, to some of his snowboard and skiing tricks from this past season, including his back flip ..... the place went nuts!! How fun!
We've had a fun weekend kicked off with a dinner at A&W and a movie, nice small theater, so I went with them with my mask, and lots of soccer games in between the monsoons we've been having. The kids all got to celebrate children's Sunday at church today and Tuck played for the congregation.
We can't thank Robinson enough for making delicious and favorite meals of the kids for this past month of May. It really is a nutty month here and my only job is is to recover. So, Troy is like the old comic book hero, Plastic Man, stretched in every direction but saves the day, every day!!
Sun and 70s must be coming in June.
Be well all and remember that every day is a gift, not an assumption!
With love - Pam