Dear Assumtion School friends....
It's been a while since I last wrote. Rachel has been to the clinic at Children's Mercy twice during that time. Two visits ago she had her 100-day-post-bone-marrow-transplant "poke." She was knocked out and a needle was put into her spine to take samples of her bone marrow.
Among the many things they did with these samples was a "census" of her cells (it is a census year!) to see if there were any leukemia cells present. This is an indepth count and it took about six days before we got the results... there were no leukemia cells found. The blood continues to be 99.999 percent Amanda's blood. All is going well.
The one "downer" is that the graph versus host (GVH) problem has resurfaced on a much milder level than it did the first time. The steroids have been increased (they were slowly being decreased) with the probability of Rachel switching over to another medication without steroids to work on the GVH down the road. But the medical folks have told us before that mild GVH is not really a downer, but a good thing. It means that a person's body/blood is tough and ready to battle... i.e. do what nature intended it to do. People who have no GVH have a lower cure rate than those who have mild GVH.
Meanwhile, back at the ranch.... our day-to-day lives have worked themselves into a more manageable pattern. The teacher who comes to our house from the local public school district each week day is very pleased with Rachel's abilities and eagerness to learn. Three or four times a day Rachel and I drive down to my church and she practices piano in the choir room (thank you St. David's). Tuesday afternoon she goes to her piano lesson. She and I work out a schedule for the day each morning so we can do make choices of what we want to do. Diana comes home after work and I go to work at night.
Diana and Rachel and the other kids will often go out to do something in the evening.... go to a restaurant, go shop at the grocery store, go to a movie or a park, etc. Either Tuesday or Thursday afternoons Kenny shows up to take Rachel on "an adventure" for a couple hours (it's his last semeter of high school and he's only got two classes three days a week).
Of course I could stop things right here and you'd all think we lived in a "Brady Bunch" episode on coming together and working to combat a tough illness in the family.... But life is not a Brady Bunch episode (or "Leave it to Beaver" for those of us a bit older).
I mentioned in my last message that I felt "shell shocked"... out of focus, unnaturally worried all the time, unable to function at times. I feel myself slowly coming out of this now and with my mind a bit clearer have come to see it in the rest of the family as well.
We've all been through or are still going through our own tough times. Each of us has had to deal with the bad things and now we're trying to wake up from this bad dream that wasn't a dream and are having trouble getting back on our feet.
This past weekend several problems (car breaking down, people missing appoints, inability to balance several things going on at the same time, etc.... a normal weekend) blew up like a nuclear bomb. As always I was at the center of the meltdown, yelling like a banshee. Sunday evening came and I was at work, not wanting to participate in any family meal... angry and feeling very sorry for myself and life in general... there was a banging at the library door (the library was closed)... I opened it and the entire family was there, smiling, with food. We sat down, ate and talked. Through it all we're still a family and still moving along through this whole thing like many other families going through hard times... two steps forward, one step back... but still talking/communicating.
I've made this much too long... but one more thing. Like all kids ours have plans for the future... an interesting thing came out at the Sunday meal.... Kenny is going to KU next year... has been indicating an interest in psychology. He said Sunday that he'd been thinking that child psychology was starting to interest him a lot. Amanda then said that recently she'd taken an interest in learning more about art therapy... helping children work through issues in their lives using art. Emily piped in that she'd been reading about music therapy and that it sounded like a neat way to help people.
Of course Rachel still wants to become a business robber baron, buying out small companies in hostile takeover bids, then closing down hometown factories and putting all the employees out on the street so she can move the company to a third world nation where she can pay the workers starvation wages and put out a cheaper product (OK... that isn't true but everthing sounded so sweet I just had to throw that in!)
No matter what they end up doing we know that these months have affected our kids and us for the better. They've seen things and experienced things that have jolted their lives and made them turn inward in thought and outward in deed.
So the news is good and we're climbing out of our bunkers... a bit shell-shocked but slowly recovering. We continue to reach out our hands in the darkness and when we do, there always is the helping hand of God reaching back.
We remember all of you in our prayers. Thank you for your continued prayers/support.
Bill Sowers