Tuesday - September 11, 2007

Tuesday, September 11, 2007

Day +63 since Jessie’s marrow was reborn from a stem cell donor. Year six since leukemia entered our lives. Five days since her touch-and-go surgical emergency. And as measured by Americans, and perhaps other nations, 9/11 is also the day when we pause, hold silence, and focus on all the implications of a terrorist attack on the World Trade Center in New York City. Lives lost, acts of heroism, an urban landscape cratered and rising anew, global dynamics altered forever. 

To rebuild from such a loss takes a long time. And the new horizon will be different. Sometimes we will see the echo of the old where the new goes up. Are we speaking of Jessie’s cancer and her hope of survival through transplant, or the changes wrought when disaster brought down two towers, but galvanized the spirit of a city and a nation? Maybe both.

PATIENCE: Today we’re focusing on incremental change. Basically, Jessie is progressing slowly but steadily. She’s also much more stable, and much further along in recovery, than most of the weekend ICU (intensive care unit) team would ever have predicted: she’s defying their expectations. That’s because they don’t know her... or because, they’re only beginning to know her. Anyone who knows Jessie, realizes that she tends to have lots of complications, but that she also has a gift for stabilizing and healing. Over and over and over.

She’s getting rid of all the extra fluids that they pumped into her over the weekend. She’s drying out. That’s good, because her lungs have been “wet” and holding onto some of the excess fluid. Her belly is softer and less distended. She’s back to the frequency of transfusions that characterized her need for red blood and platelet support on 6West... normal for a post-transplant kid... though at higher threshholds (in other words, they keep her boosted above 80 for platelets, which means about 14 units a day).

LUNGS MOST OF ALL: Although many systems were affected by and involved in Friday’s emergency, her lungs are having the slowest recovery. She’s on the BiPAP machine, with the mask and ventilator, and cannot breathe safely yet without it. To help her wean off the mask, they are slowly turning down the pressures at which they provide oxygen and force extra-deep breaths (her body is doing all the respiratory work, the machine simply forces additional oxygen and deeper inhalations, slowly opening closed air sacs in the lungs and re-expanding them). Today she cannot take off the mask at all. Tomorrow, we’ll attempt short intervals without the mask (possibly with the oxygen cannula prongs in her nostrils instead) to help her lungs improve. They need exercise and time to heal.

Remember, her lungs had a fungal infection in them. The left one endured an invasive surgery, and was then stapled closed afterward. The internal bleeding and massive pressure of accumulated fluids in belly and diaphragm compressed and deflated portions of her lungs. And they sustained some trauma when her vital signs and blood gasses went haywire. So they need some extra time and support in order to return to a better level of functionality.

Once her breathing is independent enough to stay off the BiPAP machine, she’ll probably be able to return to 6West. We hope to be downstairs around the weekend. We’ll see.

Again, we’re not in a rush. Not now. Everything is slow. She can take as much time as she needs to stabilize and rebound. What’s more important than this mighty effort she’s making right now?

EXHAUSTED: Daddy and Charlotte both visit today, but Jessie’s asleep. She’s been moved around for different examinations during the morning. All that work of sitting up, rolling over, and scooting around tuckers her out.

CAN’T STAND THE MASK: The BiPAP machine is tough to endure, and she’s running out of tolerance. So we’re deliberately keeping her sleepy by afternoon. The mask is so aggravating, that she claws and works at it, nudging it askew, peeling off the padding that they put down to protect her nose, making leaks in the seal, setting off alarms, and generally wrestling with it. The respiratory therapist and her nurse have to put it back in place a few times a day, and she pushes back and resists them as hard as she can, eyes shut tight, half-asleep, but determined not to wear it any more. Sometimes she gets hold of the anchor dressing around her N-G tube, too. She’s a busy girl... even when she wants mommy to read, she’s trying to peel up whatever she can get her fingers around. 

By night, we’re really keeping her sleepy enough so she doesn’t fight the mask and BiPAP machine too much. And putting the soft fabric restraints around her wrists, and keeping her hands away from her face. Tomorrow, we’ll try again.

LIFE IN IPSWICH: Sarah walks to school, though it’s raining, in the company of other 8th graders from our neighborhood. Among friends, she doesn’t feel the weather. She’s settling into the rhythms of middle school again, and spending time with friends after school ends, before daddy comes to pick her up. She and daddy have quiet evenings together, doing homework and chores, eating fresh dinners using Appleton Farms produce, keeping each other company, catching up. Probably not as idyllic as it sounds, but it’s home. It’s cozy. And maybe a little lonely, without mommy and Jessie.

REVENGE or RECONCILIATION: Today we think of innocents who lost their lives without warning. Others who chose to act, and save a life. Or to try to. And the commitment of a community, a city, and a nation to rebuild. 

We can be knocked down and bowed over by grief. We can fall in the face of such events. And if we’re fortunate enough to survive, we can stand up again, walk, hold out a hand, and try to bring about change.

Maybe days like this one remind us that we have a second chance... a chance to find ways to support change. People in our lives do this every day, by the many ways in which they help us overcome cancer. This weekend, Jessie’s team will walk in the Boston Marathon Jimmy Fund Walk. They’re raising funds and awareness for Dana Farber’s Jimmy Fund, by traveling the Boston Marathon route. Many patients and families (partnered with the teams who are walking for them) will either join their teams, or in our case, cheer at the finish line. 

We could be bitter, over and over, because of the events that challenge Jessie. Or we can triumph over them, and find ways to make a difference, as others are doing for us. Won’t you help us? This week, we invite you to support Jessie’s team.