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Hi everyone,
We've reached a new milestone - today marks 8 days straight that Travis has been out of the hospital! Strangely enough, this then should have been an easy, joyous week, right? Mais no. Somehow, maybe it was my defenses at last giving in, as last week I was in a deep pit of black ugly crabby sad tiredness. I think you can only stay strong, energetic and focused for so long, and last week I felt there was just no more to give for awhile. Joe felt much the same (with much less of the ugly crabby part). We both agreed that we could sleep forever and we were really "ready for a new dream - this one is getting REAL old." The good news is, for both of us, our old energy and fighting spirit has started to come back a bit. No kidding, this was probably my worst week since the very beginning. Felt like the black hole. Having my parents here has given us a reprieve in many ways, though as my mom said, "we can help you with so many things, but we just can't take the problem away." More about my parents in a moment.
Travis is doing pretty well, though for some reason (guess they're those listed below) I'm feeling nervous - I think Joe a bit too. Last week we got the news that Travis' CMV (Cytomegalovirus - that he had in his body, dormant, before the transplant) has become active. So, he is now on a new IV medication, 2x a day for an hour each, to arrest this virus before it turns into something potentially dangerous. I remember reading about scary stuff related to CMV, so we're hoping this drug wipes it out NOW. Also, we received PCR test results, which shows any Philadelphia Chromosome (meaning -- watch out, cancer indicator). Our doctor warned us that they frequently still see the PH+ at 30 days post transplant (if they've been PH+ beforehand), and not to worry too much if it was there, so we were ready. The test was kind of good news. They look at two levels in this test - one level of looking at cells, and then another, deeper look (my highly scientific words). In the past, Travis had PH+ at both levels. This time, he only showed PH+ when they had to look at the "closer, deeper" look. So, the nurse seemed encouraged by that. They've done another blood draw to check it again, as we're almost 30 days after the last test was drawn (now at Day 54). Our doctor said we don't want to see PH+ at 100 days post transplant. That would be not good. It will be about 2-3 weeks before they get the results of this one.
More: Travis' platelets have dropped, so we're hoping by Monday they'll be back up. The doc said if it drops lower, then another Bone Marrow Aspiration (no fun) to see what's going on. And, I've noticed that Travis' tongue is black on top! And his breath has a strange, sweet odor. Strange, huh? First I though it was vitamins or juice that was doing it, but now they think it may be some sort of fungus, so now he's on Nystatin at least 3x a day. This is a "swish and swallow", yellow, ICKY (Minnesota word) liquid. Sweetheart Travis hates it and still takes it. He is SO unbelievable. He just knows how important this is to his health - maybe he even knows the importance to his life.
That, IV fluids at night, frequent belly pains and fatigue pretty much sums up Travis' health this last week. That's why I'm nervous. So many damn unknowns. But in spite of all this, Travis still has a sweet sense of calm and humor. He is SO easy to be with - so pleasant - that we marvel at his ability to deal with both his illness and our moods!
I think Spencer crept into the hole with me last week. He's been having a lot of ups and downs lately too. I think we all just want to be back in our own home surroundings with room to move without stepping over stuff all the time. Spencer has always been a bundle of physical energy and "passion", and it presents challenges here when we have so many limitations. Spencer is trying so hard - we can tell. He's just not equipped emotionally to deal with this (and just what age does that come, anyway?). As his wonderful teacher says "He's intellectually much older than 4, but emotionally he's 4 all the way." He has been commenting more and more often lately that we don't pay as much attention to him and that he doesn't think highly of himself. GULP. We don't want to fall for manipulation, but Joe and I really believe he feels this way. We're trying SO hard to make him feel special and loved, but we see his sadness nonetheless. It's a constant challenge with Spencer. He is unique and special in so many ways - we want to do right by him through all of this. I really believe its' as hard on the siblings as it is on the patient - just different issues.
Parenting: My parents have put up with a lot of crap this past week. And boy have we learned from them. Except for a few "slip ups", they follow Dr. Ruth's three rules for grandparents, which my mom quoted as "Don't open your mouth, spoil the kids, and don't get tired." My parents, Bob and Selma Goldish, have quietly and agreeably, done everything we've asked (or barked, as it were), with deep understanding. I keep wondering, when I'm a grandparent, will I be able to keep my opinions to myself (since I'm always right!) like they have (mostly)? I'm sure not. These two people have put their lives on hold to be at our beck and call, solely to help make our lives easier so we can focus on the boys. We are luckier than words can say. I guess writing this is my way of giving them the recognition they deserve publicly, as well as the thanks and apologies that we owe them (for putting up with all our moods and "stuff"). Thank you Mom and Dad. You are, and always have been, the best role models for parenting I have ever, ever seen. Thank you for getting us through this. A few other quick miscellaneous things - Travis' eyebrows have become DARK! He had blonde, non-visible brows before. Now they're dark and swarthy. His hair seems to have thinned this past week, too. Barely any left now (and we thought he would hold onto the cute fuzz he had). It looks though, like his scalp is becoming dark - our little blondie is growing dark hair? More on that as it develops (Travis is excited to have dark hair "just like Dad.")
And pill trivia - Travis takes up to 25-ish meds a day (depending on the day of the week), since many of them are large pills that he will only take if crushed and put into small capsules that he can swallow. So, add Pharmaceuticals to my resume - 3x a day, I'm crushin' and breakin' and pourin' (can you imagine, these fingernail sized capsules -- and me, pouring and closing the buggers without spilling "much") - some days its up to 18 of these things that I make (plus readying the others). A strangely calming routine for me though. I keep wondering where the hours and days go. I think between the meds, IV and central line care, already 1/3+ of the day is gone. The rest seems to go to doctor appointments, food and hopefully some fun play. Man, how our lives have changed.
Anyway, sorry this was kind of heavy stuff. But the good news is (and the only news that really matters) that Travis seems to still be doing what they expect and doing pretty well. We pray it only gets better. Thanks for all your continued support and understanding.
Love,
Melanie and Joe and Travis and Spencer
P.S. And no, we don't know when we can go home!