On Thursday, Kinsey will have surgery—but it won't be (for now) related directly to a transplant. They will do two things: 1- remove her central line (and for now NOT put in a new one) and 2- do another bone marrow biopsy to see "what is going on in the factory."
The fact is her numbers have continued to slowly come up. She is taking only one pill a day and NO IV meds. She is going to the clinic once a week. She is playing with her little neighborhood friends and her sisters everyday. She rides her bike, jumps on the trampoline (thank you Aunt Tee Cee), swings, plays dress up, and makes up plays and songs. She has even had a chance to swim a bit in a 6 inch "baby" pool (to avoid getting her central line wet). Next week, that won't be an issue and she has big plans to do some SERIOUS swimming and bath tub play. Bottom line: she's having a great summer, probably the best of her life in many ways.
Quarantine has not been lifted but has been "relaxed" a bit, allowing the girls to play with a few "well" friends and we've been able to get out a little more while "using common sense." We won't be going to the state fair for the second year for example.
So what's going on???
This is the kid who was supposed to live only 4 weeks after we arrived in May, 2002. This is the kid who was fitted for radiation pads to protect her kidneys during pre-transplant radiation therapy and two days later started getting well enough to postpone that transplant. A transplant that had very little chance of working, one that was considered a desperate measure when there wasn't even time to look for a matched donor. We would later (after that transplant had been delayed and delayed and finally called off) find out, of course, that there was NO matched donor.
Yet, despite our hopes that she would continue to get better and actually respond to the immuno-suppression treatment, we continued working on the "back-up plan" of producing a matched sibling. That all happened in June of 2002. That was the month Kinsey finally got out of the hospital. That was the month we took her to Kathy's House with a 18 hour a day IV regimen and a 7-day a week clinic schedule. That was the month Teresa got pregnant. We were so excited, yet continued to hope that even IF she carried the baby to term (which looked unlikely) and even IF the baby was a match (which was against the odds) Kinsey wouldn't need a transplant. Maybe, just maybe, she'd be okay without such a drastic measure.
Of course, many short hospital stays later, several biopsies (of the liver and bone marrow) later, many fevers later, more than 100 clinic visits and more than 100 transfusions later—we learned that YES indeed the baby was a match and YES Kinsey would definitely need a transplant. It wasn't until March when we were in New York that I finally made peace with that fact. The fact that Kinsey would probably die without a transplant and the fact that we probably had one shot at a successful transplant and Kinsey would probably die if it failed in any way. We worked hard to prepare ourselves and her—mentally and physically. We learned all we could. We knew the risks, the odds. We were as ready as we could be and so were her doctor and nurses. THEN she got a cold, just a little cough really—but enough to delay one week. Just one week.
But the cough didn't go away and by the second week there was this little surprise with her platelets. Probably a fluke, we all thought, but better check out that cough. A CAT scan showed fluid in her sinuses. Sudafed cleared it right up and we were once again ready to go—but, in the meantime, as a test, her doctor had taken her off the last IV medicine "just to see what would happen without it." No one was shocked when her white cell count dropped like a rock. But then, labs taken right after the sinuses cleared showed a small rise. "Let's wait 2 more weeks." Subsequent labs have shown all counts rising slowly on their own.
Her red blood cells are, for the first time in 17 months, in normal range—without having had a transfusion. It's been about 6 months since she had a red cell or whole blood transfusion. Her platelets on Monday were 45,000 (normal is 150,000 to 450,000) up from 38,000, which had been up from 32,000, up from 28,000... And her white count: 1.2, 1.5, 1.5, 1.7, 1.8—dangerously low, but still moving in the right direction.
"What's going on?" we ask. "Does she need the transplant or...?"
She probably does still need a transplant to fully recover, but one needs to be 100% sure before doing such a risky procedure with so many short and long-term side effects. The only medication she's on is a low dose of Prograf, an immuno-suppression drug. It's possible her counts are coming up in spite of that drug, and he may take her off it to see. And it's also possible a therapeutic dose of the drug (an increase) would help her counts even more. "I'll know more after the biopsy," is all Dr. Big Dog will say for now. We have a conference scheduled next week to discuss results, options, what it all means. At the moment, we think he's as puzzled as we are.
When I helped Kinsey in the bath tonight, I said, "Just think—only one more night of using this aqua guard [to cover her central line] at least for a few weeks." She said, "Or forever." I said, "Don't get your hopes up. Even if it's only out for a week, you'll get to go swimming and you can splash in the tub without worrying, and one day soon it will be out for good."
Then I asked her if she wanted me to shave my head AGAIN before transplant since our hair has grown out so much. She said, "Don't get ahead of yourself mom; there may not be any transplant." We try to discourage her from getting her hopes up too much because mental preparation for this thing has been tough and none of us wants to go through it again from scratch. Better to think DELAY rather than NEVER. And in all likelihood this IS simply a delay. A delay that—despite some inconveniences—means several positive things:
Jillian said tonight that she wanted to meet a real dragon. Kinsey told her, "You can meet a dragon all right, but it'll be a dead dragon." One way or another, we're going to get this dragon; it just may not be how OR when we planned.
Karen, Audrey, Kinsey, Jillian, and Teagan
P.S. Kinsey just got out of bed to come in and ask me to scratch her back. "Up a little, right there mom—where the scars are." As I scratched her back—smooth and soft except for the small raised areas where scars mark biopsies past—and rested my cheek against her soft buzzed hair, I thought about how much she's been through. It breaks my heart to think of the fear she's faced and innocence she's lost. This experience has changed her so much, all of us. And while I think she's a better person for it, I know she will always have scars, ones that show and bigger ones that don't—in the same places where ours reside.
She asked me to read the update to her, which I did. She reminded me of a couple of things and then said, "Be sure to tell everyone I love them. And thanks for all the support."
"Okay, I will," I told her.
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