Saturday - September 01, 2007
Saturday, September 1, 2007
Day +53. Tallying up these days.
BEADS: Yesterday the oncology units started a special bead program. Patients receive a special glass bead (all sorts of shapes, colors and characters) for different experiences.
For children like Jessie, who have a long history, they were able to provide one “historical” bead for each category, to represent the umpteen-thousand times a child might have undergone something. For instance, you get some beads...well, hopefully only once. Like diagnosis. Remission. End of treatment. Relapse. Transplant. Or maybe you earn those beads a few times...hmmm. Other beads you receive over and over: lumbar puncture beads, surgery beads, scan beads. For instance, you can earn a bead for every catheter. If Jessie had been collecting them for 6 years, imagine how many Jessie would have...even if you just count up the cardiac catheters! 16 or so?
All in all, if Jessie had a bead for every time she endured an experience represented in the bead catalog, she would be hanging yards of beads around her room! As it is, she checks off almost every category in the bead catalog. Only a few aren’t applicable to her range of experiences: shunt and organ transplant, for instance.
From now on, she can earn a new glass bead for each event or procedure, and add it to her collection. We have the string of beads hanging from her pole. It doesn’t represent a particular order. She strings it in her own eclectic order, based on favorites and certain ones that she likes best. Regardless of whether the beads fall in chronological order, the string tells her story.
NO BEAD FOR THIS ONE: Some experiences aren’t represented by beads. Today. It’s the first time Jessie leaves her transplant room and takes a lap in the garden after months of isolation. A first day in the sunshine. A first day feeling summer air on her face. A first day under the dappled shade of trees, listening to birds chirruping and water splashing in the fountain.
For this outing, Jessie wears her blue silk robe (thanks to the Atkinsons for this elegant attire) and her pink Red Sox cap, and pulls hospital blankets up across her shoulders. Molly, resource room staffer and family friend, pushes the wheelchair and mom steers the IV pole (with its 6 clicking pumps and dangling plugs and other assorted clanking gear). We stay mostly in the shade, since bright light quickly gives Jessie a headache. She squints up at the blue sky, and a grin flits across her face a few times. She finds a few of the animal statues in the garden, and takes sidelong glances at flowers. It’s almost all too much stimulation, and yet she enjoys immersion in the garden world.
One ride in her wheelchair around the garden is enough. Then it’s back to room 614, to celebrate with more pasta from Bertucci’s!
Many transplant patients have more mobility and freedom. Once a child has been on the unit 7 days, if they aren’t required to be on isolation, they are allowed to walk (run or ride or play) in the hallway and use the play room of 6West. They have a slightly larger universe in which to navigate. Due to contact precautions from infectious diseases (vanco-resistant enterococcus and BK virus and zoster), Jessie cannot go outside her room.
But now that she’s engrafted (with enough neutrophils to bolster a young immune system) she’s allowed to travel outdoors. She wears a mask on the elevator (we cannot ride with anyone else) and in the halls. No detours to crowded public spaces. Just a direct path from transplant unit to garden. But she can be outside in the garden, during less crowded times, without her mask.
BREAK-OUT DAY: Patients who remember “the old days” of life on the transplant unit, before all the renovations, tell stories about similar milestones. They used to celebrate “break-out day” (when there was no hepa-filtered environment, and a child had to engraft in order to leave their room) by blockading the door either with Silly String or cardboard blocks, and having the patient push past the symbolic barrier to the outside world of the unit’s hallway!
In a way, today is Jessie’s “break out day!”
MOUNTAINS: Meanwhile, daddy and Sarah are spending days and nights in Vermont. They’re camping out of computer and cell phone range. Truly beyond reach, except by extreme measures (that would involve phone calls to Vermont police and sending people out to retrieve them). We’ll learn about their weekend when they return home late on Sunday night. If they have enough energy left to make contact! :-)
REMEMBER TO SAVOR IT: We hope you’re all enjoying the weekend. And if you get a chance, remember to spend a little time outside. Even if it’s raining or snowing or cold wherever you might be. And certainly if it’s summer outside. Because...because it’s a blessing. This world. And our ability to touch it, or to let it touch us. It heals us, too, in its way. We are better when we’re connected to the living world, than when we exist in a vacuum-sealed, climate-controlled universe where the sun doesn’t reach and the wind doesn’t blow and water only runs from a faucet.
Jessie is more relaxed tonight. Smiling more easily. Laughing at jokes. A little more talkative. Because she has been reminded that she, like everyone else, belongs to a relationship to something bigger and more vital than room 614.