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Dear everyone,
So here we are, two clinic appointments later, I realized there hasn't been an update from us. Sorry -- one would think life had slowed down since Travis was out of the hospital and I'd taken a leave of absence. Somehow that hasn't been the case, YET. It will soon, we hope. Good news though, Travis' last two appointments have both shown that the GVHD seems to be under control. He's now experiencing only occasional, brief cramping and very, very dry skin on his hands and wrists. Minor stuff, as far as we're concerned.
Today's clinic news was mostly good. WBC 8.2, Hgb 9.1 (highest so far for both of these), Platelets 119. Platelets have been going down each week, so that has us questioning things a bit. But it's quite possible that the Foscarnet (drug to fight the CMV Retinitis) is beating up on platelets. Travis will still continue on Foscarnet intravenously every 8 hours, and on fluids nightly, to flush the drugs through his system (along with his other drugs - taken orally). Makes for lots of busy-ness around here, but of course, well worth it -- no question.
Yesterday was a big day for us -- as it was 6 months since Travis' bone marrow transplant. What a horrific, amazing, growthful, and even sweet and personal journey. We can hardly believe half a year has already gone by.
This past week, Spencer has had some sort of cold or flu. He's been having a tough time emotionally, as well, with pretty extreme highs and lows. He said the other day, "I'm glad I'm sick, so I can get more attention, Mom. It seems like Travis gets all the attention from you." My heart was in my throat. And he wasn't saying anything unreasonable. It's true, so much is focused on Travis throughout the day. I tried to explain that much of the attention is about administering medications, and not play time, but halfway into that line of reasoning, I just stopped and thought, "Hell, this child is 5 years old and truly needs more attention." So, we're trying as best we can to help him feel special. It wrenches my heart, though, to see how torn he is at times by all this craziness. Fortunately, he is feeling better now, physically. Spencer is such a gifted, funny and spirited boy. His meltdowns are sure warranted, though. (I have 'em too.)
We're holding our breath that we all don't come down with whatever bug it is that Spencer has. So far, Travis has been coughing, but seems to feel fine. The boys have been playing like "normal kids", having a ball with each other (thank God they are absolutely best friends) both inside and out. The boys were even riding their bikes the other day for a short time. Gulp! I get so nervous, but know that it's likely the best thing for both of them. Joe is much better at giving Travis more "rope" and encouraging him to do physical things. The roots of my "other religion", Worryism, are altogether too strong for me, so I tend to do the more sedate, quiet activities with both boys!
Yes, I am on a leave of absence now from work. It has been 4 days of an immense weight now off my shoulders. I can't say it's been carefree, but it's without question, the right decision. Both Joe and I are trying to catch up on sleep (spelling each other as best we can). We are both still so emotionally and physically wiped out. It has been so important to be able to focus on our family, ourselves and each other without the added stress of work. We have a ways to go, but this has been a great start. I realize how fortunate I am to work for an organization and incredible leaders that have allowed me to take this step away from work. Everyone should be so fortunate.
Today, we took down many of the green ribbons that our neighbors put up upon our return in December. It's been like a warm hug each time we drive onto our block, seeing the flashes of green all over. We left a few up in our own yard -- couldn't completely do away with them.
Well, it's almost 10 pm, and Travis just woke up for the first of his many nightly wake-ups. He just asked me to come cuddle and sing him back to sleep. I'm out of here. (-:
Thanks for still keeping us in your thoughts and prayers. Next clinic appt. Monday, and next eye appointment another week after that. More to come, to be sure.
Love,
Melanie, Joe, Travis and Spencer
P.S. I'm back! One more thing. Travis' medical team has told us to hold off on having him attend school until May, at the earliest (instead of what was to be now). Between Travis' still being on immunosuppressant drugs (leaving him more vulnerable), and all the flu and strep going around, we've agreed to take no chances. Travis is quite disappointed, but quickly took it in stride. He understands that it's for his own safety. So we figure even if he attends the last day of school to meet and thank the kids and his teacher for including him in the class (even though he's not physically been there for one day of class yet), that will be good enough. We're lucky enough to be home.