Tuesday - September 25, 2007

Tuesday, September 25, 2007

Day +77. The day shines...literally and symbolically.

OUTSIDE AGAIN: For only the third time since entering the transplant program, Jessie goes outside today. For over 12 weeks, she’s been living in isolation on 6West, in part due to transplant restrictions. But she also cannot leave her room because she’s colonized with an antibiotic-resistant bacteria (vanco-resistant enterococcus, aka VRE) that could be easily transmitted to other immuno-compromised patients in the hospital setting. To protect other patients, she’s on contact precautions (gown and gloves) and must stay in one room. 

The exception? Going in a wheelchair to the garden.

A few weeks ago, she reached a point of stability that allowed her to be free of IV medications for extended periods of time (an hour or so), and we could go outside to the garden without too many extra impediments. Until that time, she’d been inside for over two months...all summer. Then we had two sunny days, that added up to a few hours, outside in the hospital’s garden. Then it was time for the surgery on her lung, to remove the fungal infection. And we all know what happened...unexpected internal bleeding, emergency surgery on abdomen and spleen to repair the damage, and 2 weeks in ICU to recover. And then more recovery time on 6West.

Today she’s stable enough to once more leave her room. We schedule the IV medications to create a window of freedom. Her tutor Michelle comes outside, too. We bring blankets to make a picnic spread (water and pretzels, yum), and books to read aloud. Push the wheelchair, Jessie tucked under a blanket, with our gear in a shoulder bag packed just for such outings. She wears a mask in the halls, and her blue silk robe to stay warm. 

Jessie swaps the mask for the pink baseball hat as soon as we go out through the doors. Puts on sunscreen. Climbs out of the wheelchair, and takes a few steps (holding onto mommy’s hand) from wheelchair to blanket. Camps out on the white bedspread on the lawn, as we listen to some Roald Dahl and some Cornelia Funke in the heat of the afternoon sunshine. 

Then we stroll the perimeter of the garden. Jessie rides in the wheelchair, with her camera in hand, so she can take pictures of the birds. Including shots of a crimson male cardinal, flitting through the branches. :-)

We’re outside for 2 hours. Woohoo! This outing, instead of exhausting her, seems to rejuvenate her. Back in the room, she has energy for more reading, and some intense crafts, that involve lots of pounding and kneading, as well as some hand-eye work with beads. Then dinner...what else? Bertucci’s. 

It’s a GREAT DAY. Bright happy power! Woohoo again!

GARDEN for LIVING and DYING: Consider Prouty Garden. It’s accessible to all patients and staff. 

In this garden, Jessie has run laps, timing herself and her companions (usually mom or dad) with a stopwatch. We often give guests a tour of the garden, showing them every animal statue tucked into the flowers and foliage. We come out here winter or summer. Watch birds...feed them, photograph them. Roll around on the grass. Stare up at the sky. Bring packs of cards, and play games with the family. Blow bubbles. Forget where we’re otherwise living. We’ve celebrated Thanksgiving in this garden, and the diningroom adjacent to it, with families and friends. It’s an island...a sanctuary of simplicity and real life, in the middle of an institutional setting.

At any time of day or night, helicopters land on the rooftop tower overhead, blades slicing the sky, carrying lives on the edge into the hands of hospital caregivers. Patients in almost any stage of acuity find ways to visit the outdoors. At-risk youths who are otherwise cared for inside a secure unit sometimes go outside to play trust games and volleyball together. Families or patients with caregivers wander the paths and break the rules to cross the lawn and dip a finger in the water of the fountain. Medical caregivers in stressful positions find peace, even for a few moments, down in the healing embrace of this natural setting.

And recently, a transplant patient went outside to the garden to die. By choice. It was closed off for this event, so that this patient could have privacy, alone with family and essential caregivers, as a respite from the acute setting of the hospital. The world’s wind and light touched this child, even in the patient’s last moments.  This was a child for whom you all prayed. And perhaps the prayers were answered differently than anyone hoped...but this place, this way of saying good-bye, was the family’s choice. And thankfully, there was a place like the garden to retreat and be together in both living and dying.

We live side by side with death, every day, in this place. Everything else is life...every struggle, challenge, and every moment of joy or peace. Every book. Every ride. Every hour in sunlight. Every breath. 

CATCHING UP: Up north, life continues in its everyday rhythms...as much as it can, with half the family located an hour away in the hospital. Sarah and daddy are off to school and office, respectively. After school, there’s extracurricular activities, such as jazz band, for Sarah. Then hanging out at a friend’s house. Then home with daddy to do homework, wind down, and get ready for tomorrow. We check in with each other by text messages, IM, or phone calls.

HOLD IN YOUR HEARTS and MINDS: Max, Matthew, Matt, Christina, Leo, Mary, Grace, Lia, Abigail, and Jenna. Each of them is in need of prayers at this time, in their journeys through cancer, relapse and/or transplant. On a different day, we expect to celebrate all the children who are thriving on and off treatment.  They deserve their own entry in our journal, their own acknowledgement of the power of their journeys, and the hope they instill in each of us...they know who they are, because we’re all still connected and we stay in touch and follow each other’s stories. But they deserve to be named, just as surely as those in need of immediate prayers, and those who have passed beyond our reach. 

For today, though, we give you the names above, and ask that you whisper or shout or sing them to yourselves. Prayers work...many of these lives have stabilized in the past few weeks, or are defying incredible odds...at least partially because of the strength of your thoughts, wishes, hopes, and positive images. You ask, and the universe listens and responds. BELIEVE!