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Inspiration
Oh man, it is almost 8 pm and I just got home from a walk around our neighborhood lake with Spencer and Travis. I raced in the house and wrote down everything I could remember, verbatim, from our most amazing heart talk just now. My eyes were flooded during our entire walk. No kidding -- these are THEIR words, not mine. I asked the boys what they loved most about each other. Travis said "I love most that Spencer always had confidence that I would get rid of my leukemia and get better." Spencer said "Me too." Then when I asked them if there was anything they would like to ask or talk about regarding what we've been through this year, the boys' sensitivity came through, past their shyness about the topic. Clearly they'd had so many thoughts that they'd not expressed out loud before.
When we walked into the kitchen, Travis said quietly, "Mom, I'm glad we got to talk about these things." Of course, I reassured both boys that we can talk about this any time, not just on an evening walk. Oh, my heart is so full. GEEZ back to reality -- as I was typing this, Spencer just said to me: "Hey, Travis hurt me!!! He pulled my pillow causing me to extremely hurt my head!" (His vocabulary is a scream!)
Escape
How can I begin to explain the incredible carefree three days that Joe and I had up the shore of Lake Superior last week? It was indescribable so I won't try -- much. Dr. Casper had given the ok for us to go to Duluth and for the boys to spend a few days alone with my parents. He'd met them both many times when Travis was hospitalized in MKE, and had confidence that between my Dad's medical expertise and my Mom's ability to take care of the kids, they'd be in good hands. And Joe and I felt the same. When we arrived in Duluth (our style is to drive thru the night while the boys sleep) at 8 am, we promptly began "training" my parents on the medical schedule and procedures for Travis' care. That night, as Joe and I left a party to go back during "meds time" to train my Dad (we did go back to the party afterwards,-- in a more somber mood -- for awhile) , it hit me with a tremendous force, just how much we've been doing every day since all this began. It was so detailed and specific -- all the procedures. My Dad's head was swimming that night as we went over every minute thing, and tried to write everything down. After we'd passed the overload point, we decided course correction was needed. The next day, we prepared as much as we could in advance. Morning and evening pill packets and primed and ready IV kits with pre-prepared syringes and fluid / meds bags, all labeled for each day and time. This did the trick. After a few more practices, my parents teamed up and handled it all like pros. They are amazing. We've had so long to learn all this -- and now we realize how much there's been.. So Joe and I let go of all our cares and worries and truly escaped to Bluefin Bay in Tofte, MN (about an hour from the Canadian border). We found one of the world's most incredible, romantic and restful getaways in the world -- I'm convinced of it. With the 10 foot wave swells and 20 foot sprays right at the foot of our room windows, we were reminded of the tremendous power of nature and of a sense of "bigness" outside ourselves. Far bigger than us and our problems. It was soothing and cleansing . And fun. I know so many families don't have the option of having someone care for their children in the midst of all the medical demands -- that we are SO lucky. But I do have to say, that for us, it was a true renewal, and very needed. THANK YOU, Bob and Selma Goldish. Upon our return, Travis was in the hall, concentrating on putting! He glanced up with an "Oh hi, Mom and Dad" and continued his task. Spencer did much the same with his playing! They hadn't missed us a bit. I think the kids sensed how badly we needed a break, and to be honest, I think they really needed a break from us! They had a ball. I think my folks did too -- and they slept like zombies soon after we returned!
Health Update As you can imagine, since this is at the end of the letter, things are going well -- HOORAYYYYY!!!! Travis' latest counts are going back up (except for WBC, which was down again in the 3.something range), he has tremendous energy and spirit, and his eyes are doing much better. Yesterday's eye checkup showed more scarring in the eyes, but not in the most crucial areas to affect sight. And the 4x a day eyedrops have helped reduce swelling and increase his eyesight, so we're very encouraged. We don't have the latest CMV test results now, but since Travis is still on 1x a day Foscarnet IV, we're hoping that there's no activity there. The emotional support we're getting from the "counseling team" is invaluable. The boys have taken to it very well, as have Joe and I. In hindsight, I only wish we'd begun this part of the healing process for all of us sooner. (Let that be a lesson!).
So now we're back to "reality", which hit us like a slap in the face. And we're trying to figure out how to keep some of the fun and peace in our lives each day. We'll see how well that goes. While it sounded like Travis could go to a bit of school, we now hear that there are a number of kids who either have or have been exposed to chicken pox at the school, so I think that dream won't be happening. It's hard for us to accept, but most likely the safest choice. So Spencer is finishing his last year of preschool and Travis will likely finish the year with his tutor at home. That's life around here.
Thanks for caring, everyone.
Love,
Melanie, Joe, Travis and Spencer
P.S. A friend told me yesterday that we've been like a real live EdTV. Yikes, what a realization! Oh well, we made the choice to share our lives and learnings, so tune in for more as the Yon / Goldish world turns.