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I know this seems sudden, but believe it or not, Travis is FREE AT LAST! Tonight at 7:30 pm. We left the hospital and became a one-room family of four at the Ronald McDonald house! YIPPEE-KI-YAY! The last few days have been exhilerating and exhausting at the same time. Three days ago, as suddenly as the masks came off for medical staff in his room, the doctors said Travis could go out on "Pass". And he was granted this privilege 3 days in a row. The first two days were glorious sunny days. The first pass was 3 hours, which Travis tolerated extremely well. Better than Joe and I - as we were stunned and stressed about the big bad world of germs, after living in Travis' sanitized hospital cocoon room for one month. But we took our Dr's recommendation and went to the shore of Lake Michigan at a stunning park on a hill, and enjoyed a blissful giggly picnic. Travis and Spencer were tickled pink to be together, and delighted in playing tricks on Auntie Jilly (Travis' Cowboy Fairy Godmother-- who was up visiting for the day), Joe and me. It was too adorable. Travis' energy was amazing. He walked up a STEEP hill, leaving Jilly panting (I wisely stayed at the shore with Spencer and then crawled up at my leisure later!) and Joe thinking, "That's my boy!". The boys enjoyed the day so well, that on the next day's six hour pass, we went back, and played baseball (hits, anyway), picnicked some more, chose Lake Michigan "treasure rocks" and then enjoyed a video back at RM House.
That's what we did - here is what we felt While we were so happy to have Travis "out", both Joe and I had our own ideas about how clean and safe we needed to be. Sometimes they weren't the same ideas (-: Just the thought of Travis touching the baseball after it being on the ground, walking on the shore and picking up who-knows-what on the bottom of his shoes, to be later tracked into his hospital room, to eating "out of hospital food" was enough to send me into orbit. My big panic came as Spencer picked up a big fish skeleton! Major hand scrubbing ensued! Travis was still hooked up to a Heparin pump, small enough to fit into a little backback and carry around, so that was another concern. As we were leaving the RMH one night, a gaggle of kids came bounding in (panic for me, thinking "keep him away from kids!!", even though he was wearing a mask) and one ran BETWEEN Joe (carrying the pump), and Travis (with the line into his chest)! Both Joe and I tackled this poor girl in a nick of time before major pain could have happened (yanking Travis' central line catheter out) and scared the ______ out of all of us. Man, the things we didn't even think about! We do now.
We washed our hands about a thousand times these last 3 days, and my knuckles have now finally said "I give". Yes, cracked and stinging. No big deal in the scheme of things. Just something to remember fondly in the future.
Yesterday's pass was pretty uneventful, as it was late when we got out, and had to wait at RMH until all the families (with their germs!) were out of the dining room until we could eat with Travis. Never did clear out, so we snuck our Spaghettio's and green beans dinner (yes, I still cook the same as before) into our room and the boys ate on towels ON THE FLOOR! I figured this was still better than being around kids that we knew had been sick this week with colds. Life was almost normal yesterday (though we typically DO use a table at home). Spencer and Travis were back to bickering about what video to watch. Ahh are we getting close to our own lives back?
Maybe not. We were the celebrity family yesterday, as Adam May and Misty ___, of NBC channel 6 in Duluth, MN (my hometown) came and filmed us for hours for an update series to air on November 5 and 6 (right after Travis turns 6 on Nov 4th! - And NO, he doesn't need presents. We'll take prayers.) They filmed a Spencer-led tour of the RMHouse, and then the boys whacking the baseball in Travis' hospital room. Travis was moderately talkative during his interview portion, and he gave a "tour" of the memorabelia in his room! (Can you believe it - this was the ONE DAY none of us were wearing our NBC peacock stuff! I felt terrible when I realized we'd forgotten our pins/shirts this one time!). Anyway, they filmed a hefty interview with Joe and me (the first segment will be an update on Travis' progress, and the second will be how the family is managing), spoke with Dr. Casper, filmed Travis with his teacher, us scrubbing our hands, and even getting Travis' dressing changed. If nothing else, I'm sure it will be an eye-opening series that people may learn from.
The Drs. had told us yesterday that Travis would be discharged today. And of course, he awoke with a sore throat! Joe and I were only too anxious to have them postpone his discharge for another day, at least. But NO! They said Travis was looking great, feeling great (after some Tylenol and juice) and doing so well, that he'd be just fine going to RMH to stay. Joe and I gulped and realized our dream had come true, and our responsibilities had also grown enormously. So after about 5 hours of packing up all the wall pictures (never thought about too much tape BEFOREHAND), toys, clothes and stuff we'd acquired, we FINALLY got out at 7:30 p.m. Poor Travis had been waiting practically at the edge of his bed all day! He did have another platelets transfusion, and got another new drug (immunoglobulin) we watched with bated breath hoping for no allergic reaction - and none came - YAY! We left with 8 prescriptions (Travis now will take about 15 pills and 6 liquid meds spread throughout each day, in addition to the daily central line flushes, twice weekly dressing changes and brush teeth, rinse and spit with Chlorhexadine 3 times a day. I guess that just about leaves time for clinic visits in between and driving Spencer to and from school! It will likely take a few days to get this routine down -- though by then, it will probably change!). Given all this, one would picture this gaunt, worn-down child. No way! Even Fairy Godmother Auntie Jilly commented at how robust (ok, that's the steroids - the appetite is back), rosy and healthy he looks. Nothing like the post-BMT kid I'd envisioned before all this. But we're continually reminded by others how lucky we are, that he is truly doing remarkably well. And of course, most of what's going on is INSIDE his body, not apparent through his looks. We have to remind ourselves of this all the time. Travis has to wear a mask in the hospital and in the common areas of the RMHouse if others are around. But other than that he can breathe real air. SWEEEEEEEEEEEEEET!
So we now have our room filled about 7/10 with beds; cots for the boys, and two twins shoved together for Joe and me. We have our "pharmacy" area on the desk. As long a no one moves, we're ok! We do share a bathroom with another family, and this is kind of disconcerting because of the hygiene concerns for Travis. But they are also a BMT family, so they're hopefully as concerned as we are. Our nurse today also suggested we use disposable plates and silverware for awhile, because of the different kitchen habits of the families here. We agree and will do so (thanks, Teresa's mom for the Sweetheart Cup stuff!).
Tomorrow morning we go to for a clinic appointment. These will likely be several times a week for the next few weeks. We don't know how long we will still be up here. Much will depend on how Travis is doing (with GVHD, fevers, counts, etc.) and how well we are able to handle all his medical requirements. So, as usual, we're taking things one step at a time.
Another success story is with Star of the Week Spencer, who absolutely adores school, and has truly been blessed with the most incredible Jr. Kindergarten teacher, Ellyn Heicher. She feels like family to us by now. It will be tough for us all to make the inevitable change, but Spencer (and our family) will be forever touched by this wonderful woman's kindness and understanding.
Meanwhile, Spencer is reveling in the learning, fun and friendships that have developed. Joe is reading books in his class this week; I'll teach pip cleaner animal making on Thursday (still trading off jobs!) and I'll explain about Travis and the hospital, leukemia, bone marrow transplants and what a wonderful brother Spencer is, to his class (the kids have been asking him about this stuff) - all in about 5 minutes, in 4 year-old language. Heaven help me.
So there you have it, we are ready for a beepless night. HALLELUYAH!!!!!
(Though I'm sure there will be at least one groggy , "Mom, I have to pee" from either of the boys!). Travis and Spencer are snoring in harmony, and Joe and I ate a FABULOUS meal from the Katz family (thank you everyone at Temple Shalom and Temple Sinai, for the incredible meals twice a week!) tonight at 10:30 pm. But we ate together! We were tired, ravenous and so grateful to have our family together. There are still many hurdles ahead of us, but weare happily celebrating this incredible milestone. Whew, another one down. Sorry these keep getting longer. If you've read this far, thanks for hanging in there with us. If you've skipped the middle to get to here, we love you anyway.
Love from the Goldish/Yon family, squished and happy.
Melanie, Joe, Travis and Spencer
P.S. Can you believe it? A Pecos client contact sent us a huge flat box yesterday - containing peacock tail feathers that she'd been collecting for the last 2 years!!! She takes care of the birds at their corporate facility and was waiting to do something special with them! We need to find out the sanitation rule on these, so until then, they'e in storage at the RMH! WHAT A HOOT!