Saturday - September 29, 2007
Saturday, September 29, 2007
Day +81. We sleep better, find another possible source for the infections, and have a down-to-the-wire game of Sorry! Up North, it’s the quintessential September day on the green soccer fields and the packed brown earth and paved walks of the Topsfield County fairgrounds, with all the scents and sights of the annual county shindig.
IN THE HOSPITAL: The transplant team agrees to shift their lab draws to 6pm and 6am, so we can manage transfusions and boluses during evening and morning hours, as opposed to midnight. This gives Jessie big chunks of sleep in the middle of the night and early morning. They can do so, because she’s taking far fewer medications by IV than she was during the middle of the day 0 through engraftment day period of the transplant process. And she’s more stable, so they can be more flexible.
In fact, the attending transplant doctor (Dr. Lehmann) reminds mommy that if the night team proposes transfusions or boluses overnight, and it seems a response to a value range (close to 25 for red blood or close to other threshholds for electrolytes) that could be postponed until daytime, we’re welcome to call her at any hour. Knowing that Jessie needs sleep, she’s willing to override their usual protocols and make a final safety determination. If she can safely wait until 7am or later to decide to hook Jessie up to more meds/electrolytes/blood products that require additional vitals and handling, she’ll authorize a delay.
This is precisely what we do between, and it works out that Jessie gains solid chunks of sleep time between midnight and 6am on Saturday. Thank the Lord! It works again between Saturday and Sunday, too. Ssssssnnnnnnoooooorrrrrrrreeeeeeee. Snore. Zzzzz-zzzzz-zzzzzz.
SOURCE of FEVERS: Oh, and a blood culture grows out positive. Gram positive is found on the lumen from one of her PICCs.
Immediately, it’s determined to pull the long-line peripheral IV. The PICC’s not as essential anymore to managing her care, and may eliminate the infection source that’s prompting at least some of the persistent fevers.
And so, we remove the dressing. The transplant fellow gently draws out the two catheters from inside Jessie’s upper right arm (anticubital area). She presses gauze onto the site, since it bleeds profusely afterward. The catheters are threaded into a vein to reach the heart area, and so there’s a corresponding wound to the vein whose bleeding must be slowed down and stopped before pressure can be removed.
Done. Out. Over.
CELEBRATING SEPTEMBER: Daddy and Sarah are in Andover by mid-morning for a close and challenging soccer match. The final score? 1-1 again! Wow, these girls are keeping each other moving, passing, guarding, taking shots at the goal, and on their toes. It’s a hot, exciting passage of time on a green field beneath a cloud-dappled blue sky.
Afterward, Sarah and her friends, in the company of adult chaperones, go to the County Fair. As teens, they spend most of their time on the Midway now, going on big rides, sometimes playing arcade games, munching on junk food until they feel sick, and immersing themselves in the loud music, bright lights, elbow-to-elbow crowds and hot smells of the fairgrounds.
ASKING and RECEIVING: Daddy, meanwhile, arrives in Boston armed with tea, new clean underwear, and hugs. All the essentials to a comfortable stay in the hospital! We take a short spin through the garden (it’s shaded and cool, and Jessie doesn’t want to linger there). Eat leftovers. Hang out. Work on her laptop computer and test wireless connections.
We play a rollicking game of SORRY! During which everyone races their 4 pieces toward the safety of HOME...and we’re down to the final few spaces for each playing piece. Jessie announces, “I just need an 8 to win.” And we flip over her card, and it’s...an EIGHT! She’s home! How’s that for a metaphorical journey? Go, Jessie, go! We BELIEVE!
HONORING FRIENDS: Again, we cannot name every person who touches our lives, there are so many, in so many ways. But we try to let you know that your efforts reach us, and are felt, and are making a difference.
For instance, packages that arrive in the mail...some with gifts from Hawaii via California. Or her first Shining Star floppy pet all wrapped up in gift paper. These packages are reserved for tough moments, when she needs an extra “something special” to get her over the hump...and by this weekend, they are bringing smiles to her face. Thanks to friends who send their affection long distance, directly into Jessie’s hands.
Our house, like any family’s, is an ongoing project. To friends who continue to help us clear out shrubs and foliage around the house, from the roots up, since we have virtually ignored our home since moving in during Jessie’s relapse 2-1/2 years ago...thanks! And to give it a much-needed “haircut” and grooming. To a tall and talented friend who is helping daddy put up barriers in the basement, and has been spending his “spare time” on Saturdays in dim spaces much too short and cramped for him...endless thanks. This project makes the difference between coming home sooner rather than later, and more safely, especially in conjunction with other ventilation and insulation systems that we’re installing to partially HEPA filter portions of the house and reduce infectious risks...tough to do in a c.1770 house.
Another “cancer family” from our Dana Farber community, has made a specific donation to Jessie’s virtual classroom, by providing a Broadband card that will provide wireless access to the Internet regardless of where we might be. It frees us from the hurdles of firewalls and restrictions on hospital and clinic networks, dial-up access at the Ronald McDonald House, and other limitations, so that Jessie can join her class from anywhere she might be. We’re one big step closer to her virtual “return” to the Big 2-3 at Winthrop Elementary. And kudos, of course, to the school system for partnering with us in this project...finding tutors, matching funds for their laptop solution, and other ways in which they help Jessie succeed as a student.
Kudos and deepest thanks to committed platelet donors such as Gary. He, too, left an exciting soccer game to offer his blood vessels up to the Kraft Donor Center at Dana Farber (which DOES take weekend appointments) and make a triple-times platelet donation. He has been loyally making platelet donations since his daughter Kassie was a patient here many years ago...and it’s her soccer game that he’s missing to be here, giving platelets.
Other friends make the journey to the hospital. They carry packages back and forth. Sometimes give rides to our family. Break up the monotony of life here, and give us a break from our isolation. Draw out Jessie’s lively personality, or simply let her rest in their company. Your presence here is healing.
Some of you are making meals. Know that they feed our spirits, as well as our bodies. And caring for the dog, or offering Sarah companionship, or otherwise becoming an extension of our family...thanks. Or praying and sending cards and packages. Every message and every positive thought is healing Jessie and our family.
And for every team or individual who raced or walked or ran or cycled to raise funds in the last few months...and all the other ways you all make a difference, thanks!
Every person who offers us their time, their talent, their resources, their energy...even their blood and platelets...is doing so, when they already have other professional and personal commitments, their own families who need them, their own households to run, their own schooling to focus on, their own health to manage, their own volunteer passions...their own everything. And yet, each of you makes time for our family, too. And so...thank you to each and every one of you. Thank you. This journey is different because of each of you.