Tuesday - September 04, 2007

Tuesday, September 4, 2007

Day +56. It’s the “first day back” in Ipswich’s school system, and the rhythm of life changes for half of our family. For the other half, days blur together, marked by medical issues and friend’s visits and small milestones in Jessie’s status and treatment.

QUICK REMINDER: In case anyone has been away for the summer, and is just catching up with us, we’ll remind you about what the “positive” numbers mean. Over the summer, Jessie went through a stem cell transplant. On July 10, after several days of full body radiation and chemo, she received cells collected from the umbilical cord of a healthy baby whose family chose to donate the cells to a cord blood donor bank. Since then, we’ve been counting the days of her new marrow’s birthday. And heck, we’re getting comfortable with those new cells! We have a long way to go, as they slowly wean the immuno-suppressants and monitor the relationship between the new marrow cells — with their own haplotype that is a mismatch to her own — in response to their new home inside her bones and body. So far, so good, though. 

We’re living on 6West, and expect to be here a few more weeks. Eventually we’ll move out to the Ronald McDonald House, and transfer to an outpatient status at the Jimmy Fund Clinic. :-) 

BACK: Daddy and Sarah have their first school day morning, with breakfast, backpack and good-bye’s at the door. Sarah walks to the middle school, and enters her first day as an 8th grader! She’s starting Spanish this year. :-) This week will be a little bit kinder than next week, since a lot of extracurricular activities begin next week. But soccer practices are already in session, and this Saturday is her first game of the fall season. 

Daddy goes to the office. At the end of the day, he takes Sarah for her annual physical (all is well) and then father and daughter celebrate with a outdoor dinner at Panera. Of course, mommy calls midway through dinner to “bug” them. :-)

GROSS OUT: Aaarrrgggh,mommy trips and falls and rips off her big right toenail down to the root. Ow. Jessie’s advice? “Sit down and relax, mommy,” until one of the nurses can provide first aid supplies to tape up the toenail. Ow again. How come mommy can handle ostomy sites and vomit and giving injections and dressing changes and all sorts of procedures, but she gets queasy from loose teeth and flapping toenails? Ew...really, mommy never wanted to be a nurse or be in any medical profession of any kind, and this is why. Even 6 years of medical settings cannot harden a stomach against a loose toenail. Ew-ew-ew.

SAME AS EVER? Down in Boston, aside from mommy’s toenail, there’s no big news today. Jessie’s counts are good. Everything else is...status quo for a transplant patient who is stable.

Jessie needs lots of platelets. She’s hungry, and loves linguini from Bertucci’s. She’s grumpy, but cooperates in important ways, such as participating in medical exams by nurses and doctors and helping with vital signs. 

To pass time, we read with the tutor and by ourselves. Watch Disney channel on television. She draws pictures. Does crafts.

She receives round-the-clock narcotics and round-the-clock IV nutrition. She needs platelets, often twice a day. She takes 3 types of blood pressure medications (Clonodine, Menoxodil and Amlodopine) and 2 more (Hydrolazine and Nifedipine) for break-through high blood pressures, which happen several times a day. They start the 50% cut on filgrastim, and a 10% cut on steroids (it will take about 5 weeks to completely taper off the steroids that act as immunsuppressants and help her new immune system wake up slowly enough not to react against her new body). Oral medications also include supplements such as magnesium, phosphorus and potassium as well as active cultures such as acidophollus. She takes several medications by IV, such as Cyclosporin (to help protect against graft versus host disease), Virconozol and Ambisome (both antifungals to manage the aspergillis and candida infections that are ongoing internally) and Unisyn (antibiotic for sinusitis).  She applies topical steroids to limbs and torso to manage a rash and topical antibiotics where the zoster (shingles) sites “unroof” (scabs come off). She cleans out her mouth and takes sponge baths. Her weight fluctuates: her belly is round like a barrel with fluid retention, and her cheeks are puffy. 

Her hair is growing back. The shadow of new growth outlines her natural hairline, and darkens her scalp. Eyelashes as thick as a model’s frame her blue eyes, and cast a different hue there. Extra fuzz, caused by Menoxodil and Cylcosporin, coats her body...this will be shed as she tapers off this drugs in the months ahead. We are told there’s no reason to expect her to lose her hair again, so she can hope to keep this hair that’s growing back.

WHAT’S NEXT? If you read last Thursday and Friday’s updates, you know they’ve checked the status of her infections via a full-body CT scan. 

The site that requires intervention is her lower left lung. Her surgeon Dr. Rusty Jennings expects to perform a thorocotomy (entering the lung from the left side of her body between her ribs) to remove the infected portion of her lower left lung. It will be biopsied after its removal. 

Tomorrow (Wed), Jessie will have an ultrasound of the left lung’s chest wall, to make a clearer determination about whether the aspergillis ball has attached itself to the chest wall. After reviewing it, he will have a better idea about how much of the lung is involved and how to plan his approach to the procedure. 

The team anticipates that Jessie will have the lung surgery at the end of this week, or next week at the latest, depending on what Dr. Jennings sees in the scans, how he plans the operation. He’s making room in his surgical schedule (he now specializes in prenatal cardiac surgeries) for her. 

Dr. Jennings has known Jessie and served as her primary surgeon since her original rectal prolapse in 2001; he has performed all of her major surgeries to date (excluding some placements of cardiac catheters). He is great at helping his patients help themselves (she inserted her own foley catheter with his coaching). He thinks about these children as whole people (even when she was 3 years old, he used to think about where the scars would be on her body when she was a teenager and considered her future body image). He visualizes their growing up; and he puts that same hopeful picture in the heads of parents and patients, too. He enjoys keeping company with Jessie, whether she’s cranky or playful. He takes time to sit down and answer her questions, and involves her in the care of her body. :-)

This upcoming lung surgery — and recuperation from it — will be the next big challenge for us. Beyond this surgery, we can truly start to think about readiness for discharge. Perhaps within 3-4 weeks (just a guess) we’ll make the transition to Ronald McDonald House. And eventually, home again. 

One step at a time. It’s not a quick journey. And we cannot say with certainty what’s coming next, though we have hopes and wishes. But we’re making progress, every day.