Sunday - September 16, 2007

Sunday, September 16, 2007

Day +68. It’s a day of finish lines, extended “sprints” and new milestones! 

MILE SIX and FINISH LINE: Walkers in the Jimmy Fund Walk (teams walking for Jessie and Ipswich cancer survivors Kassie and Matt and so many other of our young friends) pass Jessie’s grin at mile six! Some stop to take pictures alongside her poster, or cheer as they walk past the hospital. Their energy, if not the sound itself, must find its way inside this room. Go Jernegans! Go Ashleys! Go Ipswich friends and family! Go Media Milers, walking again this year for Jessie! 

“Go, go, go!” to every team out there. They are all walking for someone. In honor. In memory. In hope.

EIGHT HOURS: Jessie is enduring her own marathon-like course today. She stays off the BiPAP, supported by wearing the high-flow nasal cannula that delivers a rich mix of oxygen, for two sprints today. In the morning, she’s off for 3 hours, wearing the cannula instead. After a 2 hour nap and a “rest” for her lungs on the BiPAP mask and ventilator, she does a second sprint, wearing the cannula, that lasts 5 hours! We hope that tomorrow they may let her wear the cannula all day, and try the BiPAP only at night? 

At a minimum, she has to be weaned off the high-flow cannula, down to the regular nasal cannula, and dependent on the BiPAP only at night, on stable settings, before she can move out of ICU to 6West. Perhaps in a few more days we’ll be back on our primary hospital unit!

SWAP: It’s another shift change for parents, as we swap back to weekday roles. 

Mommy spends the morning with Sarah, before hitching a ride to Boston with Judith Atkinson. Our mother-daughter morning includes the homely tasks of folding some clean laundry. And then we share a pancake breakfast at church, and exchange farewells in the middle of the echoing fellowship hall, surrounded by many other members of our community. It’s a bit overwhelming, to immerse ourselves in the noisy, crowded, and affectionate chaos of First Church’s environs for the first time in months.

Daddy spends one last day with Jessie in ICU, and then goes home to Ipswich by mid-afternoon on Sunday. On his watch, Jessie has progressed to sitting up in a chair for several hours, completing appendicostomy flushes on the commode, staying off the BiPAP for hours, reading two more Roald Dahl books, and playing a game of “I Spy” that involved actual conversation! He’s home in time to pick up Sarah from youth group, and then helps her finish up some homework that requires online connections and a parental signature. 

We’re already scheduling Sarah’s after-school days for this week. She has lots of extracurricular activities, starting with Select Chorus and Jazz Band and tennis, and then including dance classes, saxophone lessons and soccer practice. In between, she somehow fits in homework! And we somehow find a way to work, and still get her from place to place, with a lot of help from a lot of friends.

PLEASE PRAY FOR: Ethan, Max, Gus, Leo, Abigail, Hannah V., Michelle, Matt, Lia and Jenna. Hold in your hearts the families of Charlie and Meghan, two children who lived bright and amazing lives, and touched the people around them, inside this hospital and outside in the bigger world, where they truly belonged. 

Jessie is living through her own marathon, every day. We can measure her progress, and see that she is getting closer to another finish line, if you consider a trip from the ICU on the 7th floor to the transplant unit on the 6th floor to be a big long journey, which it is. And meanwhile, everyone around her is part of this sojourn. The finish line keeps changing. There’s always a new destination toward which we travel. 

And along the way, we meet so many people who are “graduates” of the Jimmy Fund Clinic, cancer-free and counting the months and years. And so many people at every point along this path...from initial diagnosis to treatment to complication to relapse to survivorship. And always, there are a few who travel too far, too fast, beyond a place where we can reach them...they are called by those who miss them and love them always, angels or shining stars. And they are also part of this journey, and they will stay with us, and be remembered, and go on changing lives. 

And YOU are part of this journey. Whether you are a friend or family member, a neighbor or teacher, a colleague or mentor, a caregiver or volunteer, a stranger who has found us...whoever you may be...you are part of this journey, too. 

We express especial gratitude for those who walked today, or supported them in their walk. Children have more hope and life today because of you.