Wednesday - September 05, 2007
Wednesday, September 5, 2007
DONATE PLATELETS: Apparently the hospital — and indeed the Boston medical area in general — is OUT OF PLATELETS! It’s such a crisis that only children who are actively bleeding can receive a bare minimum to stop dangerous bleeding. Kids with platelet levels of 6 are waiting for platelets! Surgical schedules are on hold...only the most life-threatening conditions can be addressed at this point.
If you can DONATE PLATELETS TODAY or TOMORROW, please do so. Sometimes, when supplies run low, they bring in blood supplies from other states, such as Rhode Island. The long holiday weekend may have used up supplies, as well, since donations often slow or stop around holidays...though the need doesn’t change. In fact, the need for platelets often jumps higher over holidays, due to accidents and emergencies. Whatever the reason for this sudden platelet crisis (the staff was shocked, too, which is unusual...they usually know and adjust transfusion parameters to help conserve), we need HELP. We need willing DONORS. As soon as possible. Lives are literally at risk, and hanging in the balance today.
IMAGINE...imagine being told your child must be actively bleeding in order to receive platelets. Jessie was due for a transfusion tonight. By tomorrow she’ll be covered in petechaie and bruises, as small blood vessels burst and break near the surface of her skin. She may have nosebleeds, and clotting again in her urine, as well as in her stool.
Please help. Please. BECOME A PLATELET DONOR! Spread the word. This problem is urgent.
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Day +57. Today is remarkable for reaching another small milestone. It also brings confirmation that Jessie’s lung surgery will be Friday.
MAKING THE MOST OF FREEDOM: Today we’ll simply share what makes this day different.
First of all, although she’s continuing to receive the same volume of IV nutrition, they decrease the number of hours she receives it from 24 hours to 18 hours. She has to be tapered off and onto the IV nutrition (due to concentrated amounts of electrolytes and chemicals and sugars and salts in it), so they have to schedule when they’ll disconnect her from this part of her IV medicines. Decreasing it from 24 hours to 18 hours suddenly creates an opportunity to be COMPLETELY UNHOOKED FROM THE IV PUMPS and POLE every day for a few precious hours. Now she has a window of time for six hours every day, when she’s not receiving IV nutrition. She receives so many other medications by IV, that they can only carve out a 2-hour gap of time when she can be completely disconnected from every pump and tube and line. But she can be unhooked! Woo-hoo!
The bittersweet truth is that this liberty will only last for 2 days. She can enjoy it today and Thursday. On Friday, she’ll undergo lung surgery, and the list of medications will change again, including connection to the PCA (patient-controlled-administration) pump for continuous doses of narcotics to manage the extreme discomfort that follows a major surgery.
We make the best of today’s freedom. We load up a bag of goodies and go to the garden. She’s wearing her blue silk robe, her pink Red Sox hat, her blue sunglasses. She puts sunscreen on her exposed ears and her hands and cheeks. She climbs out of the wheelchair, onto a clean blanket on the green grass lawn, in bright sunlight near the fountain (sssssshhhhhh, don’t tell anyone that we went on the grassy lawn that no one is supposed to use).
She blows bubbles and tries to catch them. Tries to blow up balloons, but they pop. She takes a ride around the garden and snaps photographs of flowers and statues with her camera. We hunt for some of the small birds that nest in the garden, but they’re all elsewhere this afternoon. A few laps around the garden in the wheelchair, and she’s exhausted. By the time we get upstairs, she’s anxious to climb into bed, and falls into a deep nap.
Keep in mind, this is the first time in TWO MONTHS that she’s been completely untethered from numerous pumps and one crowded IV pole. Mobility, even for short periods a day, is a major incentive to moving around and pushing boundaries and challenging her body to new accomplishments. :-)
SURGERY on FRIDAY: Although we don’t know any logistical details, we’ve been told that the lung surgery is scheduled for Friday morning. One of two surgeons is slated to do it...her primary surgeon may hand it off to his professional surgical partner, who also specializes (among other things) in lung surgery in transplant and immuno-compromised patients. Following the procedure, she may spend a night in ICU to ensure stability. They’ll save our room on 6West, and we’d hope to be back there after a brief interlude in ICU.
Jessie knows the surgery is coming. She swallows hard, asks a few questions, then primarily focuses on questions about what happens AFTER surgery.
She’s thinking ahead to discharge. We have explained that this lung surgery is one of the last big challenges before the team helps us get ready for the transition to discharge, residence in Ronald McDonald House, and outpatient care at the Jimmy Fund Clinic. And eventually, the transition to home. So she’s putting pictures in her head, of playing with her friends, getting out of here, and being more independent and healthier!
MIDDLE IS as MIDDLE DOES: It’s Sarah’s last year of middle school: 8th grade. It has started off well, but she’s already busy. She handed in her summer assignments, including science observations, reports on books she read, and other projects. School pictures will be taken Friday. Wow! She’s mapping out her afternoons, which will be crowded with commitments beginning next week. She takes dance classes three days a week (Monday, Wednesday, Friday), and she has saxophone lessons and soccer another day of the week (Thursday), and jazz band rehearsals the remaining day (Tuesday). And that’s before she signs up for intramurals sports after school, such as track. Every day includes homework. And social time with peers (which is always a priority at this age) whenever she can swing it. Weekends are busy with soccer games. And family time, split between Ipswich and Boston. Yawn...it makes the rest of us tired, just listening to the schedule, and then trying to remember it and help her get back and forth from her different activities!
MAKING IT ALL FIT: Daddy fits his life into all of this busy-ness. He’s partner in an architectural firm and president of the local Rotary club. He’s single-parenting Sarah, for all intents and purposes, while mommy and Jessie keep a separate household in Boston for a while longer. And he’s helping us stay stable, by frequent visits, and coordinating packages back and forth from Boston.
Of course, friends help bridge the distances. They keep us company in Boston, and bring necessities back and forth. They help with rides and companionship for Sarah. And in so many other ways. Our community has become like an extension of our family, and they make it possible to keep living and working and functioning, 6 years after cancer first entered our lives.
LEARNING from AFAR: The Ipswich school system is also working with our family, to support both girls. They keep an eye on Sarah on campus at school, and the elementary school staff works to help keep Jessie connected. Her teachers made trips into Boston this summer, building the foundations for her relationship with the classroom. Tutors keep her active in the hospital, with an emphasis on reading. A team of educators and specialists from Winthrop Elementary is working on different academic models, including curriculum plans, tutoring solutions, and a virtual classroom model...all of which will help Jessie keep up with her class this year, as she regains enough stability to become an active student again.
Remember, she missed part of kindergarten, half of first grade, all of second grade. After 1-1/2 years out of school, she re-entered second grade, only to relapse 5 months into the school year. She completed a lot of her school work with tutors this spring, and has stayed current enough to qualify as a third grader this year.
She cannot attend school this year, so her education will be in isolation, or through virtual connections by computer with audio and video conference capabilities. A tutor (in our home) will provide a one-on-one boost. The academic team will be using information gathered from a 2007 neuro-psych evaluation completed just weeks prior to her relapse, which pinpointed a few areas where she needs extra support, due to past cancer treatments. Only time will show us how this additional round of total body radiation, chemo and transplant has affected her “student self.”
Jessie’s eager to be part of her school, and to be identified as a third grader, so we’re sure she’ll tackle school willingly, once she’s well enough to focus on it. One step at a time. For now, we’re laying down the infrastructure, so that when Jessie’s ready to try, we’re ready to help her challenge herself.