Day +82. The refrain of Jessie’s days: ”When can I get out of here? What’s keeping me here? What do I have to do? Can we ask?”
TWO PARTS: As ever, you have to look at the past several months from two perspectives. Jessie relapsed for the second time at the beginning of April. She underwent two aggressive induction rounds of chemotherapy as an inpatient on 6West. And came out bald, but strong...earning an orange belt and a purple belt along the way. She was robust, energetic, cranky and feisty. Transplant itself went well. Infections were her downfall.
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.
Day +80. Holding steady. Still getting closer to discharge from the stem cell transplant unit, despite fevers and localized infection. The earliest chance for discharge? Probably about 12-14 days from now.
If you don’t want lots of meticulous detail about Jessie’s status, but you want to know why we believe in large and small miracles, and continue to ask you to BELIEVE with us, you’re welcome to skip down to the last paragraph, where we share some encouraging news with you...and a family’s plea for you to “keep doing what you’re doing.”
INFECTIOUS COMPLICATIONS SLOWING US DOWN, BUT NOT DANGEROUS: Yes, her low-level fevers continue most days. But both transplant and infectious disease teams are continuing the antibiotic course (Zosyn, Vancomycin and Flagyl) and working under the assumption that they have identified potential sources of the infection: pockets of excess fluid around outside of heart (pericardial effusion...not very likely), lungs (pleural effusion...probable), or in her abdominal cavity (highly likely). Perhaps also the enflamed colon and bowel tissues (highly likely).
Day +79. Only a few more days left of September...and then autumn really settles in. The county fair opens. Pumpkins fill the fields and corn mazes attract adventurous explorers. The seasons are changing. Our lives are changing. For the better, we hope.
JESSIE’S STABLE: If you want a detailed update on current events, check out yesterday’s summary of the CT scan and other diagnostics, and what they entail. She’s currently being treated for a low-level post-surgical infection of the tissues around the lower bowel and colon. A follow-up scan next week will help us assess what progress she’s making, and the next steps toward resolving this infection, which is the current challenge to overcome before discharge. Otherwise, she’s feeling better every day...taking more steps, standing and moving more, sitting up, becoming more active (she spends time on the computer for the first time in several weeks today), reading aloud, completing craft projects, engaging in conversations with her caregivers, taking oral medications as opposed to IV ones, and stabilizing other metabolic and physiological factors that must be in better balance before she can move to outpatient status. The earliest window of opportunity for discharge is about 2 weeks from now, in mid-October.
Day +78. Yesterday, no matter what our journal originally said, was day +77 (we’re once again getting confused and losing count...not sure of days, dates, or times inside the hospital anymore!). Today is a day for PUZZLING SYMPTOMS and DIAGNOSTICS to explore possible causes and provide likely EXPLANATIONS; then the team forms TREATMENT PLANS.
BY MORNING, JESSIE’S BODY IS POSING QUESTIONS FOR THE TEAM: Tuesday night into Wednesday morning is a long stretch. We are awake a lot. She spikes a low-grade FEVER (38.4c) for several hours, even though she’s already on antibiotic coverage with Vancomycin and Zosyn due to fevers over the weekend. Plus she’s on antifungal coverage with Ambisome and Voriconazol.
Day +77. The day shines...literally and symbolically.
OUTSIDE AGAIN: For only the third time since entering the transplant program, Jessie goes outside today. For over 12 weeks, she’s been living in isolation on 6West, in part due to transplant restrictions. But she also cannot leave her room because she’s colonized with an antibiotic-resistant bacteria (vanco-resistant enterococcus, aka VRE) that could be easily transmitted to other immuno-compromised patients in the hospital setting. To protect other patients, she’s on contact precautions (gown and gloves) and must stay in one room.
The exception? Going in a wheelchair to the garden.
Day +76. You can see the changes in Jessie. Some are reassuring. Some are sobering. It all depends on what comparisons you make, and what you expect of her, and what you believe is coming.
UPDATE: The transplant team pauses outside the door of 606 to discuss a few adjustments to her treatment. Truly, they’re tweaking doses, and managing the long-term after-effects of the transplant on the body’s different systems: tinkering. It’s all necessary management, and it’s all...routine for a transplant patient. Such as checking blood sugars, and changing her maintenance IV fluids from D10 to D5. Supplementing her electrolyte balances with oral and IV doses of magnesium, phosphorus and potassium. Boosting her body’s ability to make its own red blood with a replacement dose drug so that she’s not so dependent on transfusions. Checking therapeutic concentrations of her anti-fungal medications, to be sure she’s safely covered as we transition to oral doses (her body is clearly absorbing and processing meds well, but then her liver actually gets smart and tolerant, so they have to change doses every so often).
