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Dear everyone,
Here I sit - IN MY VERY OWN WARM BED AT HOME - trying to figure out how to get my feelings down on paper. So I'll just dump (don't I always?). Two days ago we got the word that we'd be allowed to come home for Thanksgiving! Funny, we felt it was a real mixed blessing. Of course, the doctor said this in front of Travis, so there was no turning back. Joe's and my first thought was "Great, we get to pack all this stuff, fight traffic, figure out the meds and supplies, fix a turkey meal, clean up and then race back for our clinic appointment on Friday. Some holiday" But then after we thought about it, we realized that our whole family really needed a dose of home to feel some foundation under our feet again.
My sister Sue is here, visiting from Oregon (shlepping back and forth with us). She's been a wonderful help with all this craziness. Sue and Joe were the master chefs today, and we actually celebrated with a full turkey dinner at our own table. Yum! The weather here in Chicagoland was magnificent, and Travis rocked the neighborhood with "out of the park" baseball hits in the front yard. Spencer went right to his favorite post, digging in the dirt pile. It was like we'd never left. Just surreal. We took a family walk around the lake in our neighborhood -- absolutely blissful. We didn't really call anyone -- not enough time to really see folks. Just had to "be".
Tonight at the dinner table, we all talked about what we're most thankful for. Joe started, totally choked up, giving thanks that our whole family was together and telling us how important we are to him. I talked about my feelings for "our" donor (in fact, she did donate to our whole family - the gift of life). She has been in my thoughts each and every minute today (and I think of her every day with tremendous emotion and gratitude). Sue was thankful to be spending such a special time together with us. Travis and Spencer were speechless at the moment. But later, as Travis was resting in bed, he quietly said, "Mom, I'm thankful to God for watching over us." Of course, my heart clenched as I dripped with praise to him for such a beautiful thought. He then said brightly and full of pep, "Do I win a prize? For the best thanks?" Ahh. Kids! Actually, I know he really did share that thought from the heart. I think my response gave him the goofy reward idea! Anyway, afterwards, I asked him about feeling thankful for his donor and he said, "But I already gave my thanks. Do I get another one?" When I assured him "of course, as many as you want", he said, "Then I'm thankful for my donor too."
Speaking of donors, this has truly been a week of incredible news - we learned of another person (who registered at a bone marrow drive for Travis) who is a full match for A FIVE YEAR OLD CHILD (like Travis was, at the time). This is someone I know - and I was moved beyond words when I learned that his marrow will be harvested in December for this child's transplant. Unbelievable.
I so apologize for taking this long to write this update. This last week has been so hectic, I just never had the time (or energy at the same time) to write. It was a week of ups and downs and ups and unknowns. The scary news was that Travis' CMV (virus cells) had increased, not responding to the prescribed drug Gancyclovir. He was switched to the 3x/day IV medicine, Foscarnate, which seems to have precipitated good news (along with the first of several Immunoglogulin (?) antibody transfusions - Cytogam) - the CMV levels dropped significantly after about 5 days. That is really important. Also, his doctor doesn't know why Travis' hemoglobin has dropped at this point, so until he figures out why, that is a concern. Travis also has developed a skin rash on his back, belly and arms, which is likely GVHD (Graft Versus Host Disease). Steroid cream 2x a day has helped that, though the rash has now spread further on his body. So we keep spreading the greasy stuff. Maybe will have to up steroids again. Was almost off of them. Travis has been very tired this week, and actually getting less exercise than when he was in the hospital, so we're trying hard to entice him to get up and move around. He is back on IV hydration each night too, as no matter how much he tries, he's still not drinking (or eating) enough, and his creatinine has crept up a bit again. This could also be from the Foscarnate, as that beats up on the kidneys, too. Oh and one of the lumens (tubes) on his central line closed up last week, so we're praying the other one stays clear. Please please So far, so good.
Tomorrow we leave home at 7 am, to get to the clinic for a 9 am appointment. This was moved up an hour, as Travis had a little blood in his stool tonight. First time this has happened. Disconcerting, to say the least. We're guessing he may need a platelet transfusion tomorrow. Will see hoping not a bad problem.
Joe and I have been exhausted this last week, and have overslept almost every day. At least I crept out of the black hole after about a 10 day visit, mired deep inside it. But the constant meds and night wakings have taken a toll. This is our medical schedule (or should be if we don't oversleep): 6:30 am Wake up, shower and get dressed (HAH! We never do) 7:30-8:00-ish am - Wake up, take out Foscarnate from fridge and prepare the morning oral meds 8:00-8:10 am - unhook IV fluids, flush central line, hook up Foscarnate, check blood pressure and temp 8:10-8:30 am - get Travis to take meds, then brush teeth, swish/spit Chlorhexidine and swish/swallow Nystatin (YUK) (takes about 20 minutes) 9:00-9:10 am - unhook IV Foscarnate, flush central line 9:10 am - clean up the mess of syringes, med cups, garbage, etc. 9:20 am - do "normal people' morning stuff 9:30-11:00 am - clinic appointment (we're almost always late these days) 11:00-noon -school (at hospital) for Travis Noon - often back to clinic for lab reports/meds change instructions, etc. Sometimes all day, if transfusions necessary. 1:45 pm - prepare afternoon capsules 2:00-2:20 pm - give meds, brush teeth, swish/spit Chlorhex., swish/swallow Nystatin 3:30 pm - take out Foscarnate from fridge 4:00-4:15 pm - flush line, hook up Foscarnate IV, take blood pressure and temp (give BP meds if necessary) 5:00-5:10 pm - unhook Foscarnate, flush line 6:30 pm -- Take out IV fluids from fridge 7:00-710 pm - flush line, hook up IV fluids 7:30-7:50 pm - prepare nightime meds and swish stuff 8:00-8:20 pm - get Travis to take meds and brush/swish/spit/swish/swallow routine 8:30 pm - get boys to bed!!! 11:30 pm - take Foscarnate out of fridge Midnight- 12:15 am - unhook IV fluids, flush line, hook up Foscarnate 1:15-1:30 am - unhook Foscarnate, flush line, hook up IV fluids 1:30 am on "Mommy, I have to pee" Mom nudges Dad. One of us grunts and runs over with urinal. And so it goes. 8:00 am - wake up in a frenzy, realizing we've overslept.
Of course, during all this, we take Spencer to school and back and try to give both boys some normalcy in the day. Believe it or not, we also occasionally wash, eat, drink and be merry I call my hairdo "the bird's nest". It's nuts! As you can see, the windows in between each "event" are pretty short. And I'm trying to do work during some of the "breaks". (-:
Other news of note since I last wrote - my folks went back home (the day I sent the black hole note - they kept me from getting sucked in forever, I think). Joe, Travis, Spencer and I drove out to Olin-Sang-Ruby-Union (OSRUI) - a kids camp and adult retreat for Reform Jews. It's only 20 minutes away from the RMH, and was a major breath of fresh air for us. Not only because the grounds are incredibly beautiful and peaceful (Travis and I sat in an outdoor sanctuary and sang some Debbie Friedman songs - of course - and said a few quiet prayers as we huddled in the cool fall air), but also because we got to meet up with wonderful friends from our temple in Hoffman Estates, Beth Tikvah Congregation. We got huge hugs (and tearful waves for Travis) from friends who were there on an adult retreat, and also got to see many kids who were there for a weekend youth retreat. It was such a taste of "home", that we were both drained and energized at the same time, from seeing everyone. Travis was great about wearing his mask and keeping his distance from folks. It was the most people he'd been around, it was a real reminder for us to be vigilant about his proximity to others. But we all enjoyed the beautiful visit. Travis' highlight was French Fries from McDonalds. We broke down and allowed them. He isn't supposed to eat any food which we haven't prepared - germs, bacteria, etc. But how do you refuse that sweet face?
I was also treated by some buddies from home, who surprised me with a visit last Sunday. These girl buddies took me out, and got me outside myself and our family concerns for a great part of the evening. Whew! Needed that. Thank you, buddies!
We were hoping to get the results of Travis' latest PCR test, which shows any presence of the Philadelphia Chromosome or not (we pray NOT). Found out Wednesday that the sample they took 2 weeks ago somehow got contaminated in the lab, and they'll have to re-draw blood for the test again, and then we wait another 2-3 weeks for the results. We're trying not to be on pins and needles waiting, but it is a huge drag, having to wait for such important results.
So there it is - my stream of consciousness recap. Left lots out, but you surely get the drift. Lots of ups and downs, just not so dramatically high or low. Our medical team keeps telling us that each case is so individual, and that anything can happen at any time, so we should not get either too excited or too worried. This road goes on for years, so we need to get somehow comfortable in no man's land in the middle. We're working on it. Doing ok, I think.
And thankful? Even with all the clutter I wrote above, words can't express how full of thanks we are today. Our hearts are bursting at how lucky we truly are - for so many reasons. We know Thanksgiving in an entirely new way. Hoping you all had a very healthy, happy holiday. We send our love and thanks to you.
Love,
Melanie, Joe, Travis and Spencer
P.S. Thank you, thank you, thank you, donors everywhere - especially ours, wherever you are.