Monday - September 03, 2007
Monday, September 3, 2007
Day +55. Daddy and Sarah are home from Vermont, and Jessie and mommy remain at Childrens Hospital Boston.
PLEASE PRAY FOR: Abigail, Ethan, Max, Maddie, Matt, Lia, Christina, Ali, Leo, Elliot, Hannah V. and Grace. All of these are children who have already undergone transplant, or are working toward it. Some of them need a miracle to achieve remission. Others need stability. Others just want to get through the transplant and engraft and remain stable. Others are seeking different answers to treatment, beyond transplant itself. Some are doing it again for a second time, hoping that this is the time when they’re healed. Others are living with complications that come post-transplant.
Before you keep reading, please pause a moment.
Whisper their names to yourself. And wish them cancer-free and marrow-friendly and well and whole and healthy and stable. Give them your focus, long enough to know they matter, too. They’re on this path with us.
ANC ABOVE 2,000: For Jessie, it’s a low-key day, with small milestones tossed in. Her ANC has reached 2,000 four days in a row, which means her medical team can begin to taper off the granulocyte-stimulation factor (GCSF, or filgrastim) in 50% drops every two days. Within 2 weeks, she won’t be taking it at all any more, and the jumps in neutrophil numbers, and the ANC itself, will all be the measurement of her new marrow’s activity without any drug-induced overdrive. Woohoo, go, marrow, go!
Remember, this is the drug which they accidentally forgot to give her for the first two weeks of transplant, which resulted in much slower engraftment. Although we cannot excuse their systemic mistake, sometimes we wonder if the lack of GCSF wasn’t a hidden blessing. The team muses about this, too. The oversight may have protected Jessie, because if her marrow had awakened sooner and faster than it did, it is possible that the multiple infections would have been more aggressive, or that her awakening immune system would have responded more angrily, and endangered her more dramatically. We’ll never know for sure, but in an ironic way, their error may have protected her. Angelic intervention? Fateful forgetfulness? Karma? Call it all what you will.
She survived the mistake, and now she’s reaching the marrow milestones that GCSF helps to create. ANCs abover 2,000, every day!
PUTTING IT ALL IN PERSPECTIVE: In reality, if Jessie didn’t have to stay inpatient for this upcoming lung surgery (to remove and biopsy the probable aspergillis infection), she’d already be a candidate for making the switch to outpatient management of her care. She’s stable. She can take a lot of the medications orally. We have to manage her body’s reliance on IV nutrition for sufficient electrolytes, minerals and other chemistry-adjusting ingredients. They must stabilize or address a way to manage her daily dependence on platelets. And once she’s not in pain from the lung surgery, they need to wean her off narcotics. Many of those goals can be achieved outpatient, through the clinic, once she’s recovered from the lung surgery.
It’s good to realize just how much progress Jessie has made in the past 9-1/2 weeks. That we can look backwards, and see the incremental improvements. And know that every few days, more accomplishments reveal her increasing strength, such as the high ANCs over the past few days. :-)
MOODS and BLOOD: You cannot tell from her mood that her marrow is in overdrive and setting records. Nope. She’s growly and cranky. Finally, she gets a long night of sleep, but it’s never enough. For most of today, she’s either giggling on the verge of hysteria, or weepy and angry. ** sigh ** She doesn’t want to walk in the garden today. And she’s tethered closer than ever to her IV pole and her monitors by several transfusions of blood products: 8 units of platelets (bloody noses, for instance), immunoglobulin, and red blood. She falls asleep listening to the Roald Dahl sequel, Charlie and the Great Glass Elevator.
Maureen comes by to make us laugh and play silly games (today’s choice: Moose in the House). Jessie cheers up in her company. As ever, friends are good medicine. :-)
TOGETHER AGAIN: Daddy and Sarah spend their morning unpacking and washing, organizing Sarah’s gear for her first day back to school, and catching up on work projects. At the end of the day, they come spend time with mommy and Jessie.
We order a Bertucci’s dinner together, hang out and watch a little Bugs Bunny and talk. Jessie shows off her string of beads. We talk about the newspaper articles about Sarah (Salem News) and the lemonade stand (Taunton) telling the story of Jessie’s friends Molly and Maggie raising funds for a laptop computer for Jessie. We listen to Vermont camping stories. Sarah privately asks some questions about Jessie’s current condition and upcoming events for the next few weeks; we discuss the upcoming lung surgery. Too soon, it’s time to say good night.
Yes, tonight is a school night for Sarah, and she has to get home and get some sleep. And daddy’s going back to work. Vacations are over. Wow. The seasons have truly changed!
YOU ARE PART OF THE SOLUTION: Your prayers are working. Your hands-on support helps us get closer, day by day. We think of you all as our companions on this journey, and for any day that we pause and consider, we know how many other families have touched us that day, to make it possible. Meals. Blood and platelet donations. Companionship for Sarah. Dog care. Rides. Fundraising. Participation in or sponsorship of athletic events like the PMC and Jimmy Fund Walk. Cards. Gifts that often find their way into her treasure box (incentives to get through each procedure). Messages. Lemonade stands. Laptop computers. Tutoring. Teaching. Guiding. Counseling. Mentoring. Coaching. Visiting. Hope.
You are heroes, to us. And you, too, are healing us. Every day. In the many tangible ways that you touch us. Thank you.