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Dear Everyone,
Slowly but surely, Travis is getting past this latest complication-- the bladder/cystitis problem. He has gone from needing to be in the bathroom, practically constantly, to more like once an hour or so, and with no pain, due to the IV drugs he's been on. During our darker days here, we were quite worried, as Travis spent so much time on the potty that his legs puffed up and his feet swelled up like little oval balloons. It was so disconcerting, that we kept dragging him off the potty, despite his protests. But any break to get his legs up was worth it, we figured. He was pretty constipated from the meds, but today was able to "pass that hurdle" too, so to speak. This hospital stay has turned out to be longer than we ever would have imagined the night we brought him in, but Travis has taken it in stride. In fact, he's maybe a little too comfortable here -- the little smarty said to me tonight with a smirk, "Mom, who's going to make up YOUR bed over there? I sure think it's great that the nurses do all that for me!" Then he got a good belly laugh out of that.
In the midst of all this, Hanukkah started last Sunday night. Spencer was given the honor of "lighter of the RMH menorah", and has been tickled pink to assemble his RMH buddies to watch him light and sing the prayers. Pretty funny -- our little menorahs are dwarfed by the humongous Christmas tree (complete with running train at the bottom) and abundant Christmas decorations. And one night we lit them, singing the prayers accompanied by the background blaring of Christmas carols on the CD player! But we went on, undaunted. Travis was pretty bummed out at not being able to light actual candles in his hospital room, but does have wonderful window cling Menorahs that we add a "candle" to every night. Tonight, the fourth night, Travis finally agreed to a "pass" out of the hospital. (He's been declining them the last 3 days, we think, because he's afraid to be away from a bathroom and from his medical care.) Anyway, tonight, the inspiration for him to come out was to actually light his brand new menorah that Joe and Spencer had picked out for him -- a small, modern, silver/gold "Tree of Life Menorah." Gulp. It WAS truly beautiful, as Spencer lit his Hanukkah train menorah, and Travis lit his meaningful new one. We now have Travis' menorah back in his hospital room, on display so he can see it, per his request.
Last Friday night, Spencer, mom and I went to services at nearby Congregation Shalom. Travis overheard our plans to go, and was feeling pretty sad, until he came up with an idea. He asked me to get a marker and proceeded to dictate a list to me, naming all the people he could think of that are in need of healing, so I could give the list to the Rabbi for the MiShebeirach healing prayer. It was incredible, this list of some 20+ names, mostly children with cancer and BMT's, as well as some other friends who have sore throats, asthma, etc. He included the names of several others as well -- one woman who had just donated marrow and the recipient of that marrow, one friend who was about to and his recipient (a 5 year old boy), and of course, Travis' donor. The Rabbi made the most beautiful remarks, as he said how happy he was to see Spencer at services (who was SO well behaved throughout -- and grinned from ear to ear at the recognition) and then reminded the congregation of Travis's struggle. He then held up Travis' prayer list. Well, between Spencer's pride and the prayers for Travis and the many others, it was definitely a Kleenex moment. And me, without one, as usual. When will I learn?
Joe and my parents have been "split shifting" to be with both boys during the days and attend to their schedules and needs. I've been trying to work full time as best I can. Truly logistically challenging (that's a whole other update -- you wouldn't believe it) as well as, you can imagine, emotionally challenging. Anyway, somehow we're making it through each day -- sometimes in great moods, other times ready to implode. Joe and I still "hand off" like relay runners, as one of us stays with one boy each night, and we're back to trading off (one night RMH, one night hospital, etc.). Not ideal, but we're dealing with it ok.
Indulge me -- a few last, quick stories. One night this week, Travis awoke at about midnight while I was working on the computer. He said, groggily, "So how's your sleep going so far, Mom?" (-: I told him I hadn't started yet, and that I loved him for being so sweet. He said (verbatim -- I wrote it down after), "Mom, there's one place I'll never let you out of (long pause) -- that's my heart. You and my whole family are there." I gasped a deep breath at this sleepy six-year old child and told him how much I appreciated the beautiful, magical things he says, to which he replied, "You're very welcome." And plopped back to sleep leaving me completely awestruck in the dark.
Tonight Travis asked to have the commode put by his bed, I thought so he wouldn't have to drag his pumps quickly to the bathroom during the night. But then he explained, "No, I want it here so you so you won't have to wake up, Mom. You need your sleep." Deep squeeze hug here. And the last one that grabbed my heart. As Travis and I were leaving the RMH after the quick 1 hour visit, Travis called up to Spencer, who was having a late dinner with Joe on the balcony/dining area, "Goodnight, Spencer. I love you." And then we heard Spencer's sweet, high voice through the whole lobby area, "Goodnight Travis. I love you too." That's what's going to get Travis though this. Thanks everyone, for your ever presence with us, via email, notes, prayers, messages, cards, food, you name it. This road is feeling VERY long and you're helping us immensely. Happy holidays to you all.
Much love and gratitude from us,
Melanie, Joe, Travis and Spencer
P.S. One of Travis' hospital schoolmates (there's 3 of them, total) and her mom made this card for Travis and Spencer, as they were feeling left out, with all the Christmas attention at the RMH. It really touched us, and we wanted to pass it along to you. They wrote:
"No matter how we celebrate the joy of Life Let us remember We all live under the same sky We all share the same sun, moon and stars Wishing you health, happiness and joy at Hanukkah and all year."
We wish you the same.