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Dear everyone,
Believe it or not, while the individual days seem hectic, full and long, the days are flying by. We can't believe Travis' BMT was over 2 weeks ago already. Now we're one of those "experienced" families - "post BMT" -- that I read messages from on the internet. What a strange position to be in.
Progress is slow around here, but moving in a positive direction. Today Travis' White Blood Count reached .3. Whew! The doctors are hoping it moves up each day, but Travis is taking his own sweet time - was at .2 for 3 days, so we were a bit edgy. Today's news was very welcome! He has been showing engraftment side effects and/or GVHD and/or infection (?) ( there are SO many considerations) - so tests have been done over the last few days. He's had fevers up and down, skin redness, coughing, and other (kinda personal - don't want him to hate me years from now for spilling EVERYTHING) signs.
Yesterday's tests showed that 84-90% of Travis' cells are DONOR cells! That's a wonderful milestone - means that the donor cells are producing. The doctors are pleased at this (us too!), though they do say that Travis' cells are "putzy", growing so slowly.
Today, Travis had a CT Scan to see if he has some kind of liver or intestine infection. Came out negative. Whew! Travis drank the grape "koolaid" dye so quickly, the nurse was amazed. I told her the trick was to plug in a Nintendo game. He kept sipping and didn't even notice he was drinking! (These computer and video games have been tremendous distractions.) I kept remembering the "Orange Adventure", and wondered if he'd add his next colorful mark on the building. Not today - whew again.
The fevers make me nervous, but supposedly all these things are pretty much expected at some point. And so much seems to be best guesses as to what is happening. It feels that way, anyway. The staff keeps reminding us that Travis has done so incredibly well so far - better than many patients. He has been eating well until the last few days or so. Started on TPN - liquid nutrition -- through his central line today . But that's because of his lack of appetite, not because of any mouth or throat sores. He really is lucky in that regard.
And the hair thing - even Travis' follicles are little fighters! Those babies have been hanging on for dear life. Travis and I laugh about them - happily - just picturing them stubbornly saying "you can't get rid of me!". I'm hoping that the hair loss is over, as he's still got "coverage". VERY sparse and short in back (peachfuzz - can even see some freckles and moles! - oops, sorry Trav), and looking just like a very short, thin haircut on the sides and top! Still light blonde. (I've heard after BMT, hair often grows back a different texture and color. We'll see what grows in!)
His humor is still in fine form (though he does have rare ugly moments - but hell, so do I! They happen on days after little sleep). My sister, Lisa, sent him a toy potted sunflower that is motion and sound activated. So he's having one hoot of a time surprising the staff with a sudden dancing flower and the LOUD music, "You are my sunshine!". Lots of belly laughs with this one (and getting better reviews from the nurses than the non-stop Macarena doll from a baby patient clapping it on ALL DAY). Thanks, Lisa!
Spencer is doing great wearing his surgical mask whenever he's in Travis' room. It was a big hurdle for him at the beginning, but he's mastered the art of the nose pinch for just the right fit. And he hand washes with the best of them. (The doctors tell us that almost all the problems that Travis may get will either be due to some type of bug already in his body, or due to something passed from someone else's hands that were not clean.) So we are vigilant. My hands are raw. Small price to pay.
I was having an UGLY day yesterday, and was swept up by a friend (thank you Ellyn!) to take Spencer out on an excersion. Our plans fell through from rain, but we went to Rainforest Caf� and shopping. Spencer had a ball, since I denied him almost nothing the entire evening! He was especially delighted when we bought his Halloween costume (Batman!) at a store with HIS name - Spencer's Gifts. He really felt special all evening, and I was in desparate need of the outside world. Worked wonders.
I don't know if I wrote before of my plans for my ritual celebration after this is all "over" (hmmm, maybe I mean when we leave the hospital). My downfall here will not be a cranky hospitalized child (Travis is ANYTHING but that) or negativity the thing that will send me over the edge is the incessant beeping of the IV pumps 28 hours a day - or so it feels. I plan on having some sort of symbolic pump smashing event. Don't know how or when, but it will bring me great pleasure to put an old broken one to pasture. These things (there are 2 types in T's room) beep continually, and one is shrill (the inventor is just yukking it up good over that, I'm sure). The shrill one also has the built in "advantage" of warning the patient and family (not the nurse - go figure) that in 10 minutes it will beep it's fool head off. This is a 3 beep warning. So here's the deal - beep means get out of bed (or out from under the laptop), cross the room around Travis' bed, figure out which one is beeping, turn it on pause, beep the nurse, explain over the intercom that the sucker is beeping and pray for a nurse to come in before the "interval beeping" takes over. These intervals are just long enough to get cozy in bed or under laptop again (thinking of course that the nurse surely will enter in time) before the shrill torture begins again. No kidding - during the night, between this and "Mom, I have to pee", I sleep in 45 minute increments. The good news is that Travis sleeps through the beeps, anyway. The bad news is that we're not the only one with needs around here, and often it can be up to 6 intervals or so to get someone in here to do their magic machine and drug thing. Yes, that's about 6 in and out of bed runs in about 18 minutes or so. My nerves are about shot from this routine. I've been reduced from a calm mom and high level business professional (or so I try to be) to one of Pavlov's dogs. OK, OK, that was my rant. I was way overdue. Done - for now. (Oh, I feel good .)
Other quick thoughts -
There was a March in Washington DC last week - against cancer. Many people turned out to raise awareness, and hopefully will result in greater funding for cancer research. Travis' picture and name was on a quilt square on the Minnesota quilt (IL had no coordinator, so MN was next option) that was displayed with all the other states' quilts. I heard it was a very moving display to see so many who are fighting this disease, how many have lost the fight and how many are survivors.
We're on the hospital 5th floor - they call it the HOT Unit. Hematology/Oncology/Transplant Unit. Always daunting when I walk under that sign down the long hall past the doors that say "doors must not be open longer than 60 seconds"). Good news is - great view up here.
I was admiring the comfort of the hospital "scrubs" worn by the staff. When I asked how I could get some, the nurses looked at me like I was crazy. I think they thought I wanted to wear these in the hospital - some sort of nurse wanna-be. Lo and behold, when shopping with Spencer yesterday, I came across the hot new chain store "Scrubs"! All sizes, colors and prints. I'm not totally crazy. They are comfortable - at home.
Travis received a gift (from someone we've never met - another BMT family on the Net -- amazing!) here - and we spent yesterday making a pipe cleaner zoo. I begged for mercy after the fifth animal. We laugh about all that we're learning here.
Two local Temples' Caring Community committees have so kindly begun bringing us home-cooked meals twice a week. It is so thoughtful. We had declined the many offers before now, but decided now that my parents have gone back home, this will ensure we eat healthy a few times a week. People have been so giving to us. We know not everyone is this lucky and want to give back when we can, too.
Joe and I actually got out on a DATE the other night. For dessert and coffee (natch!). Good news - great to get time together. Bad news - we both were feeling crummy! Oh well, my heartburn is now gone and Joe is fine too. The company was wonderful and the dessert was to drool for. We're glad we went.
(Thanks Mom and Dad for encouraging and enabling us to do so.)
Thank you so very much, everyone, for the incredibly beautiful emails and cards we continue to receive. I am completely amazed at how each one is so inspiring and encouraging for us. You all are far kinder than we would have ever thought of being. Now we know better.
Many thanks. Love from us,
Melanie, Joe, Travis and Spencer