Monday - September 24, 2007

Monday, September 24, 2007

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).

IT’S THERE IN BLACK and WHITE: While outside our room, they pause to look at the family portrait taped to our door. It’s a black and white print on white xerox paper, but it’s striking. It’s one of several shots taken in our backyard by Ipswich photographer Terri Unger, the day after we confirmed Jessie’s relapse. This informal copy was printed, last minute, to bring to the hospital so Jessie could see her family and picture HOME. The day of this photo shoot, we knew everything would change. It was a Saturday afternoon last spring, and we chose to capture those hours before...well. Those hours before. 

And here, on our hospital door, is the record of “before.” In sepia tones. We’re all in sweaters, since it’s a slightly chilly day. Overcast. Diffuse light. In our backyard. We’re perched on the wooden bench by our old shed. Behind us is the texture of 100-year-old wooden shingles and glossy green holly leaves, converted into shades of black, grey and white. Sarah grins into the camera, slightly protected by the fall of her long hair across one cheek. She’s nestled between daddy and mommy. Both parents are distracted, smiling and looking down at Jessie, who has flung herself across the back of our black labrador Lacey, arms twined around the dog’s neck, smiling but not looking into the camera, trying to wrestle her way out of this photo shoot, and probably everything it means. She has a head of short thick hair framing her face, and she’s clearly well-muscled, round-cheeked and healthy-appearing. (At the time of this photo, she’s just come back from karate studio, where she earned a new orange belt, and she’ll later go on to earn her purple belt during the two cycles of induction chemotherapy between April and June.)

The team stops. Admires the photo. And reflects on the difference between then and now. They reflect on the composition. Asks about Sarah...how old she is, and what she’s doing now. Where the photo was taken. Who took it. WHEN it was taken. They’re surprised that it was taken so soon before transplant. They muse. Pause. Think about the “big picture” of who we are as as a family.

WHAT A DIFFERENCE: Lesley Lehman, the attending physician on transplant unit for the next 3 weeks, and one of the directors of the hospital’s transplant program, says as she looks at Jessie from 5 months ago, “I didn’t realize she was so healthy when she started this process. She looked so robust! Look at her muscles. And I’ve never seen her when she had hair...or I did, and I don’t remember what she looked like. Wow. What a change.” 

Yes. Jessie looks different now than then. But imagine her one week ago. On oxygen support. Tubes in every part of her body. 12 pumps. 16 lines. 2 foleys. Chest tube. Mask and ventilator. 2 central lines. 2 PICC lines. 2 IV’s. 1 arterial line. Leads to monitors. O2 saturation lead. Incision sites on abdomen, ribs, back, and chest. We won’t even remind you of all the additional medications, transfusions, and nutrition required to maintain her stability.

And now? She’s on 4 pumps, 6 channels. One foley. No oxygen support. No IV nutrition or insulin. Standing on her own. Getting in and out of bed with less and less help. She has skinny calves with very little muscle tone, but she can stand on her own, which she couldn’t do until the end of last week. Her hair is growing in. She’s awake enough to read with her tutor, to sit up and play games and do crafts. Tired enough from all the recovery to sleep, sprawled in bed, for hours at a time. Fewer and fewer dressings on healed incision and IV sites. Eating. Drinking. Taking medication and nutrition by mouth, not into her vein. Needing less and less pain medication. Requiring fewer transfusions. Asking when we can go home. 

Now. She’s not the young girl who earned an orange belt the day after a bone marrow biopsy confirmed her second relapse with ALL and confirmed this journey through transplant. She’s different, there’s no doubt. But she has the same spirit. And the same willing character, that pushes back and overcomes great odds and defies expectations. Her body will come back to her in time. She’s healing from the inside out...certainly. 

So we can look at the picture from last spring...and know that’s where we’re headed. Except she’ll be working toward a different-colored karate belt in our next family portrait.

BELIEVE! It’s all in how you look at the picture, and what you see, and whether you see it as a sad story or as a promise of what’s to come. Again.