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

weekly update

The week has been fever free! I think the virus that had invaded my body has finally left. I've been sleeping well .... in fact a little too well. Either I've been trying to catch up on lost sleep from hospital stays, or middle of the night travels, or DHMC back and forths, or just plain fatigue. But I have been quite tired over the past week. I've gotten into the habit of snuggling in my warm, cozy bed till late morning. A shower, some lunch, and a walk make up my day, then the troops arrive home and seem to head in ever direction of just head outside and play. I'm pooped again by 5:00/6:00 and in bed snugglying by 8:00.
Today I seemed to wake up ready to go however. So, maybe I'm turning the corner, again. Well, let me be more clear, "ready to go" means I got up by 7:30/8:00 and didn't go back to bed. I've done things like emailing and check books, pay bills, etc... Not off and about.

I had a good check up at DHMC yesterday (my weekly Wed.) The chimerism report was back (this shows the % of donor cells engrafting against my cells) and it was 100%!!!!! I have complete donor engraftment. This was very exciting news for all of us. My white cells dropped down again from last week, who knows why .... could be meds, allergies, a little bug in me, etc... I'm having suttle signs of GVHD (graph vs host disease) that we'll keep watching. One is nausea. I have a feeling of morning sickness pretty much most of the day, through night, sometimes waking me in the night, but without vomiting. Another is a suttle rash on my legs and arms, and the last is in my mouth; dryness, swollen and red gums and white patching on my inner cheeks. I'll take a good rash, no nausea and be happy with that.

I can't tell you all how appreciated the delicious meals have been. It provided us with meals, left overs (which is so great the next day when I really can't focus on making myself something ... and to just reheat .... I can handle) Troy arrives home by about 4:00 and coaches Sam's Addison United soccer team 2 nights a week from 4:30-6:00 and Tucker's team the other two nights 6:00-7:30. And the nights they don't have soccer, they have either baseball (Sam) or lacrosse (Tucker). The weekends are filled with games and tournaments. Griff's in there too with baseball two nights a week. And in between Troy's spare 1/2 hrs here and there, he mows the lawn, or vaccums, or swiches laundry .... I'm not heading into public places still like the grocery store, so to not have to think food for the whole week is huge!!

Thank you to Terry Gooley, Porter Knight for shuttling Tucker to and from lacrosse, to Shawn for shuttling Sam and Griffin to baseball, and to my parents for EVERYTHING! Shuttling me back and forth to DHMC for appointments, cleaning our house, helping with the kids, just taking the initiative and doing for us! Thank you all!
Until next week -
Pam

home Tues, and good check in Wed.

Hi all -
I was able to leave Tuesday, and I got home around 6:30. We had to turn right around and head back down Wed. a.m. for my scheduled weekly visit, but well worth the drive to be in my own bed and see the kids.
We had a great visit yesterday. We went in with alot of anxiety as to what might be happening with my bone marrow due to these crazy drops in my counts. Although they don't have the cymerizm study back till next week (which tells us % of donor and host cells in my marrow), Dr. Meehan said my bone marrow looked GREAT! They had it up on a big slide for all the brain power to see yesterday. He said, "your bone marrow looks like my bone marrow". There was no reason to suspect rejection. All my counts rose from Tuesday too ... and he's pleased to see that. There are lots of maybes as to why they dipped down .... marrow is very sensitive now .... it could be meds, allergies, but he feels pretty convinced that the fevers and counts are due to a virus. AND that I'm probably going to keep having more fevers for a bit till the virus kicks. They've seen it with two other patients ... and suddenly, their counts were good. His advice to me to was .... STOP TAKING YOUR TEMP! Get up to pee at night and go back to bed, only. I was turning into an anxious basket case. So, time to recover!

Pam

DHMC again

So we got back home Thursday night about 6:00, still with fever at 100.4, but all tests were clear. Might as well be at home, but if it went to 101 .... back in.
Friday - slept ALL morning and didn't even get out of bed till 2:00 but temp was in the 99s, by 3:00 low fever again, by 5:00 spiked at 102. Call down .... come check in. By the time we got everything lined up and covered, we left by 7:15 and got here at 9:00. Again, all blood work, cultures, xrays and CT scan on lungs ... everything still clear and negative .... but, my counts had dropped significantly, all of them. With an infection or virus, it would be normal for white cells to drop, but shouldn't necessarily effect platelets and red cells, and these dropped too, especially platelets .... alot. This has brought concern to the drs. as to what is going on with my bone marrow and possibly the engraftment. Saturday I had a bone marrow biopsy (which was
scheduled for Wed. anyways). By today we'll get some info from it from the pathologist. This morning they did think it looked good and that this could all be a virus. Hopefully that means I head home this afternoon. On Wed. when we meet with Dr. Meehan, he'll have more info/plan/adjustments/whatever to share with us.

This is all very unnerving and scary. And I have to remind myself it's not black and white, "works or doesn't work" ..... it's all gray really. All symptoms I have, could be a number of different things at any time. There are so many factors and there lots of bumps and hurdles. Since everything went so text book last time, this has been very hard mentally since I left the hospital the first time (see what I mean twhen I kept saying that was the easy stuff ... they real work begins when you leave).

We'll update again at the end of the week.

Love - Pam