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You think YOU'RE surprised! So were we, when suddenly at Travis' clinic appointment today, his doctor said, "I'm sending you guys home." To which Joe replied, "And what exactly does that mean?" Sure enough, he meant HOME HOME, for good (hopefully)! With that, the hurricane of activity began, as we worked like whirling dervishes to jam our worldly goods, collected over our almost-4 month stay at the RMH and stuff it all into 3 cars (mine was there for work, we'd had the van up all along, and Mom and Dad's). While we only lived in one room (plus the other one for my parents during their stay), you'd have thought we were having an estate sale from a huge mansion. Somehow, during the changes of seasons and covering Travis' birthday and the holidays, we'd collected a TON of stuff. But with perseverance and a lot of boxes and bags, we got it all in after about 5 hours of packing and cleaning.
So we've been officially "discharged" and need to bring Travis back to Milwaukee for weekly clinic visits (unless any problems arise; then of course we'll do what's necessary). Still on IV fluids tonight, then off that. Continuing IV Foscarnat to fight the CMV virus and still some remaining meds, though nothing like it was several weeks ago when I recited the "schedule from hell." He is still receiving Cytogam (immumoglobulin -- also to fight the CMV) 2x a month, which is a 3 hour transfusion. And next week, another bone marrow aspiration, to make sure no Philadelphia Chromosome (cancer indicator) presence. Travis' activity will still be restricted for quite awhile -- no crowds (to avoid potential infectious disease or virus / bacteria exposure), limited restaurant food / public area activities, and no public school until approx. 6 months post-transplant (March, we hope). Our house has been thoroughly cleaned, shampooed, filtered, etc., to try to head off any problems. Wonder how long we can keep it clean. Yikes, a new challenge.
So here we are, ready to start this next phase of life. It's not "back to our old lives", since we truly see life through new filters -- I call it the BMT / cancer filter. I know we will never see things the same as we used to before this unreal, intense experience. And the strange thing is, it's not over. Just this phase (thank God). I'm not sure what our lives will be like now, praying with each test that the cancer doesn't return (Travis' type of leukemia is prone to relapse, which is why we chose BMT right away to try to prevent that from happening) and managing the side effects that may continually creep up. I've heard much about the prejudices he (we) might encounter, as a child with cancer. I pray, too, that this will be minimal. How heartbreaking, on top of all that he (and we) have endured already. But one step at a time
I have to write about what today felt like. I am still amazed at the waves of emotion that kept coming at me all day. I woke up, full of energy -- happy that the boys were in great moods and feeling good. As I raced out to start work, I saw one of our RMH neighbors sitting stock still in the dining room, flanked by his relatives. I knew right away that something had happened. Tragically, their beautiful baby daughter Kimberly -- their only child, who just turned one year old -- had died early this morning. This child had been in the hospital with cancer and heart problems since she was about 3 months old. We'd watched this couple day in and day out, spending hours on end with their baby, mostly in the hospital, though several days at the RMH as well. In fact, one night we joined them at an RMH family dinner when Kimberly was out and doing well. I felt so indescribably awful for this sweet couple. After sobbing with the Mom (who was about to go choose her daughter's burial dress and coffin), I had to pull myself together to try to work. (Can you feel the waves?)
So there I was, finally getting on a roll, catching up on work, when my mother ran in exploding with the news that Joe had called -- we were going home! I was stunned. Four months of trying to keep plodding forward. Four months (and then some) of so much anxiety and so much intensity. And then, like a light switch, it is proclaimed by our doctor, "we're going home today". It was enormous and I could barely comprehend it. Especially in light of the tragic news of Kimberly's death. I couldn't get over the fact that we were all at the RMH and the hospital because we were almost drowning. And we were all clinging together to reach a life raft. We'd made it to the life raft, and Kimberly didn't. And it felt awful. Of course, I was eternally grateful that Travis was deemed well enough to go home. But the enormity of it all was too much for me. I knew, however, that we had to go home. We had to go to a place where we felt healthy, rather than felt reminded of illness and even death at all times. So I packed and cried, and packed and snapped, and packed and cried some more. Joe held it together much differently, as he was masterminding all the meds and car-packing. He was a man on a mission. The boys spent the day pacing, ready to leave in a heartbeat. And of course, my folks -- well, they just helped, as always.
Our homecoming was joyful. I woke the boys up as we drove down our block (Joe was driving behind us). They snapped awake (it was now 7:30 pm) and RAN from room to room, shouting "Our homey, our homey!" and greeting all their old toys. Even they felt the difference -- that this was not a pass. This was, we hope, for good. We were back on familiar turf (as Spencer said -- "forever").
Our lifesaver friend, Ellyn, had stocked our fridge with lasagna and sub sandwiches. It was wonderful. Spencer was so excited, he saw an Israeli flag (which ironically, we'd received the day before Travis was diagnosed and this nightmare began) and began waving it around, yelling happily "We are Jewish, We are Jewish!" Too funny! I don't even want to explore that one! Travis looked up at me and said, "Ok, Mom, now when do we go to Israel?". (This is his "wish" which we'll be doing likely in late 1999 or early 2000, pending Dr. approval and wish-organization arrangements.) I just laughed and told him to let me catch my breath first. The one step at a time speech for him, too.
Travis handled our homecoming true to his style, smiling and laughing, but in a peaceful, snugly sort of way. I don't know if he realizes how huge this step is. And we don't want to emphasize how truly dangerous our path has been with him. But he seems, well, enormously relieved to be home. As are we all. Spencer's was true to his personality, too. He gyrated with artistic dance moves as we had music blaring throughout the house. And happy? You bet.
Some of you have asked about the boys' schools in Milwaukee. You're right, that's the bittersweet part of our leaving. We have been so blessed with both Spencer's and Travis' loving and devoted teachers, and the friends we have made at the schools and the RMH. We plan to take the boys up after winter break so we can all say more thoughtful goodbyes. It hurts to leave everyone, but we know it's the right thing to do -- we have to pick up and continue on here at home.
After our "homey dance", Joe and I unpacked like crazy people. We all assembled (with my parents) and said "Shechecheyanu", a prayer thanking God that we've reached this day. And then Joe and I quietly toasted with a glass of wine. Now it's late -- and here I sit, needing to get all this out and to remember it all. (Yes, the wine is at my side!) I have thought of this moment for so long. I guess I feel the need to warn everyone -- yes, here it comes, the self- protection part. This is not over for us. So many parents have told us of their homecoming, when people say "Whew, I'll bet you're glad that's over with." And life is expected to go back to normal. And we're continually told that it's not. I know our lives will never again be "normal", and we're still on this scary journey. But, thankfully, to go back to this image I have, we've made it to the life raft. Now, we keep heading for shore. When will they declare that "we've made it"? We don't know. Some say it's 5 years post transplant or 5 years post diagnosis. Our doctor has warned us even longer considering potential related complications. But we refuse to look over our shoulders every minute. No one can live like that. I wonder if this makes sense. (I know it does to you cancer parents.)
Now that we're home, I want us to rediscover that endless positive attitude that we had going into this. I know it's there, just been pushed around a bit. First, though, tonight we mourn the passing of a child who never had a true chance at life, and her family that lost their beloved baby. And thank God, we're filled with hope and gratitude as we celebrate in our own home -- a homecoming with BOTH of our children who have endured so much.
Thank you, everyone, for your love and support and patience with us. We know you rejoice with us. In the days ahead, I'll continue to write updates as often as we have news (likely shorter, don't we all hope!) presumably after clinic visits.
YIPPPPPPPPPPPPPPPPPPPPPPEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE WE'RE HOMEY!
Love,
Melanie, Joe, Travis and Spencer
P.S. Our friend John continues his fight in the hospital tonight. His parents were overjoyed for us. We're praying for John and all of our friends who are still working to get to this milestone.