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Dear everyone,
The past few weeks had been pretty positive as far as Travis' counts, energy and CMV status (inactive after a week of Foscarnet). However, the last five days have been increasingly difficult for Travis, particularly each morning. Since Monday, he has awoken with severe belly cramping, diarrhea and vomiting. His checkup at the clinic Monday showed all is well, and they suspected possibly a touch of the flu. In the afternoon, he was up and exercising and having a ball, like nothing had happened that morning. Then each day, this scene repeated. Thursday, the pains were particularly acute (Travis has to just sit on the toilet for up to an hour, doubled over in pain), so Joe took him back up to the clinic in Milwaukee (stopping 3 times along the way for bathroom and throwing up episodes). Travis again checked out ok, and the staff figured it was likely acid settling in his stomach overnight, causing the cramping, and some mucositis causing the vomiting. They've been weaning Travis off of Cyclosporine (immunosuppresant drug), and figured we should bump that back up, and add Rinitidine again (antacid) back into his meds schedule. Both Wed and Thurs eve, Travis "yarped" again -- everything in his poor little belly.
So here we are in strangely familiar surroundings, and even more strange, it feels comfortable -- not at all awful being here. Travis and I are in the hospital for the night. Joe and Spencer are at the Ronald McDonald House. And again, Travis was fine all afternoon! So now we wait to see what the morning brings. We're hoping they'll be able to observe, firsthand, what he's been going through, so we can take the appropriate action. The good news is that for the first time in a few weeks, Travis' counts went up a bit (WBC 5.4, Hgb 8.3, and Platelets 152). We're still watching his creatinine, as it has crept up to .9 again -- we know Travis doesn't drink enough to flush the foscarnet out of his system well enough. We're trying
So Travis and Spencer went to their posts playing Nintendo this afternoon, while Joe and I got our bearings again. Coincidentally, our friend, Andrea (mom of the boy, John, who befriended our boys at the RMH, and passed away last month), was here. What a gift to be able to see her and talk to her and remember John with her. Even Travis was sharing his memories with Andrea, particularly how he'd been so wonderfully kind with Spencer, 6 years his junior. She said that John enjoyed Spencer and Travis, as they were so bright, the three of them had interesting conversations! I'll be seeing her again before she leaves tomorrow.
When this belly pain stuff came up, both Joe and I had big pits in our stomach -- the "oh when will this ever end" kind of feeling. I basically "shut down" with dread. Joe forced himself to keep going and got me back into a state of not worrying or blowing this out of proportion. Strange, though, I don't remember too many episodes of Travis being in so much pain as this ( I KNOW my mind has wiped those times out), so it is very disturbing.
Today, Spencer acted up, refusing to go to his school Purim party, choosing instead to (after kicking, scratching and screaming) cuddle in the lobby of the school with me. This poor child has been on such a roller coaster. He was fine the rest of the day, though. Another quick note on Spencer. He turned FIVE last Saturday! We had a fabulous time -- just the four of us, making a Mario birthday (his wish -- from Nintendo 64). Joe decorated a cake with a Mario face and scanned a Mario T-shirt. I created a treasure hunt that had the boys scrambling all over the house squealing over the clues they found. And at the end, was the new Nintendo game, Mario Party (from "Mario" -- aka Auntie Lisa and Uncle Bruce). The boys had a ball. Our house was decorated with tons of balloons and streamers, so Spencer felt special from the time he awoke. It was a great day. So that's the latest. Sigh
Hopefully this will pass sooner, rather than later, and we'll be back home continuing Travis' wonderful recovery. In the meantime, another highlight of our week (besides Spencer's birthday), was receiving a most touching letter from Travis' donor. Thank you, our dear anonymous friend.
As I was just writing the above paragraph, I had about a 20 minute "intermission". Sweet Travis awoke and went through the "cramps, bathroom, vomit routine." You can just picture the routine, him doubled over in pain, as I hold his head while it all passes through and the pain subsides. (Usually, it's Joe by his side for this -- he is SO calm). My heart just breaks for him during these episodes, but at least now he's feeling better from the "release" and is settled back in to sleep. The resident and nurse came in during all this, so we'll see what the morning brings and what to do from here.
More soon. Thanks again for all your love and prayers and support.
Love,
Melanie, Joe, Travis and Spencer in Milwaukee