�
Dear Everyone,
Yes, we've "been home" for almost 2 weeks now. What a whirlwind! One day, two of our neighbors braved the chilling cold and tied green ribbons on all the trees up and down the block -- to honor and welcome our family back home on behalf of the neighborhood. Isn't that incredible? And they're still up. My heart is so full when I see them. The mastermind of this idea, Teresa (thank you!!!), had told me of it months ago, and just the image of us actually coming home and seeing this tribute had helped me get through a number of difficult times. And some other beautiful neighbors came and snow- blowed our driveway twice in one day, as we got dumped on just days after our return. We are so blessed and grateful.
� Click Here for full sized picture.
Travis loves being home too, though is struggling a bit with the limitations imposed on him, as compared to Spencer. We're erring on the cautious side, in terms of exposure to others, so we're not taking him out in public much, around other people. Too many winter unknown bugs. But we'll be getting school district home tutoring up and going soon, so that may help him feel stimulated and give him more daily structure.
Joe has been holding down the fort, while I've had to be out of town on business for the last 4 1/2 days. Thankfully, my parents have been here to help him manage the non- stop demands during this time. I go again this week for 3 days, and he'll have to manage "alone" as my folks leave tomorrow. But we do have to reclaim our lives as best we can and figure out how to juggle our home and work needs. We can't depend on others forever. And I won't be travelling quite so much after this, I hope. It's a struggle.
It's probably a more difficult adjustment for Joe and me, returning home, as I've been jump- started in high gear back into work. We're SO happy to be in our own place, but haven't yet gotten our acts together completely. It'll take time. Reporters have been here, chronicling Travis' (and our family's) progress and there's been quite a bit of press -- fortunately, sharing our good news of homecoming with so many. Pretty amazing mementos from this experience. Travis' "press file" is about 5 inches thick! Let's hope it's just brief updates with the "everything's going great" theme, from here on in. Joe has been making the trek up and back to Milwaukee with Travis, and keeping up the meds, etc. In the midst of this, he made good on a commitment we've both chosen. He prepared and delivered Shabbat dinner to a family in need last Friday night. He said it was such a rich, rewarding feeling, to be able to give back and experience what so many have been doing for us. We're hoping to be able to do so each Friday night.
A few blood-related stories -- Joe went to donate platelets 2 days after we came home (which he wants to do regularly now), and unfortunately, his vein "ripped" a bit during the procedure, so wasn't able to donate right then and now has to wait a few weeks. Today was a blood drive at our Temple and Joe was ineligible because of this. And I went (upon my return to town from the airport), and was declined (for the 4th time!) due to low iron, despite my attempts to eat the right stuff and take vitamins to "get accepted" this time. So frustrating for us both -- we REALLY want to do this. (I'm not anemic -- just barely below the threshold for donating blood -- but a great excuse for my always being tired!)
While at my company meeting this week, I got to spend time with two amazing heroes. One -- Megan -- a colleague who had donated marrow a month ago, and the other -- Joey -- a colleague who will be doing so this week. It is such a gift to be learning of the BMT process from THEIR perspectives. As frustrating as it is for us recipient families to be "in the dark" about our donors, it is as difficult for these courageous donors. All the thoughts we've had about our wonderful donor for Travis -- praying for his / her well-being up until the time of transplant, and of course every day since, are mirrored with the same care and worry felt by Joey and Megan. There are so many layers between the donor and recipient, that information is sparse and not especially timely. But just as I saw Megan, she beamed and shared news that she'd just learned -- her recipient had just been released, post transplant and was doing very well. Of course, that started waterworks for me that continued on and off throughout the next few days. It was all I could do to not cry at any remotely emotional moment. It was a completely exhausting week for me.
Actually, I did fall apart when we had a recognition dinner, and I had the opportunity to thank everyone publicly for their unbelievable support and commitment to me while I was "underground" and to recognize Joey and Megan, for representing all of us who'd registered to donate marrow, but had not matched anyone (YET!). It was one of those gasping / talking / crying moments. But I did manage to squeeze the words out. Spending time with Joey and Megan was like therapy for me -- a very grounding experience. They both are deep, wonderful people. Joey is now totally absorbed with this momentous event coming up. It was SO moving to see how he has committed to being the picture of health (he was to begin with, actually) for marrow donation. I can't begin to imagine the awesome feeling of responsibility these donors have, particularly now, in these few days before transplant, when the recipient NEEDS their marrow to survive right now, after chemo and radiation. I took pictures of Joey and Megan for the boys. Travis, especially, is VERY concerned about them, and asks all sorts of questions about their health and, in Megan's case, recovery (still some soreness on her hips "when she goes running" -- can you stand it? -- but otherwise, seems to be doing great.). We made comfort packages for each of them, and had so much fun doing so. They represent SO much to us, it's the least we could do. Travis even made a little video message for Joey, that was soft, serious and sweet. Joey said it brought tears to his eyes. Mine, too, while I filmed it. Thank you, thank you, wonderful donors.
Somehow, between the all day and night schedule, I was able to meet a BMT family that we'd met on the internet BMT Talk list. It was so heartwarming to meet Zak and his parents, Kim and Gary, in person. It felt as if I'd known them so well, since we've gone through so much "together". They are truly lovely, strong people and are awaiting their walking papers to go home to Colorado soon. We can't wait to get that news. It was fascinating, too, to see the Ronald McDonald House in Minneapolis. Very different than ours -- definitely more spacious. Like apartments. I'm glad I didn't see the space while we were still in one room! But no matter what, this organization is so very worthy of support.
A last piece of sad news. Remember our friend John, from the RMH in Milwaukee -- so many of you sent messages that you were thinking of him, or praying for him. Tragically, he passed away just a few days after we left. He was a creative, positive, caring 12 year old boy, who touched our family deeply. Joe and I are mourning his loss and are desperately sad for John's parents and family. We haven't told the boys. We just don't know how, or if we should burden them, or scare them. They do talk about John, and continually include him in our prayers of healing. In due time, we'll hold them close and tell them this news about their friend. It is so very sad
We are figuring out this new phase of our lives at home as best we can. We're a bit numb, often overwhelmed, but always in awe of how fortunate we are. We are finding lots of things to smile about. I'll keep you posted as things progress. Here's to only good news for all of us
Love,
Melanie, Joe, Travis and Spencer