We met with Dr. Margolis on Tuesday (August 5) and are still in shock about the news. Kinsey's bone marrow biopsy was "NORMAL," meaning she no longer has aplastic anemia—even though she still has some effects of having had it (such as the lower cell counts). Her red cells are in normal range and moving up. Her platelets are steadily moving up, and though her white counts remain low—he saw a lot of "baby" white cells and feels hopeful that all her counts will be normal in a couple of months! Normal! Most people respond to the medical treatment option within 4-6 months. A response after 17 months is almost unheard of.
He says he can't explain it and doesn't know to what it should be attributed, but that whatever we are doing is working. When I said, "I can't believe we shaved our heads for nothing," he said, "Oh no, I wouldn't say that. Whatever you've done has worked and I wouldn't want to change one little thing."
"What does this mean?" we had to ask, sitting there dumbstruck and crying just as we had 14 months earlier in the same room but this time with tears of joy. Kinsey munched on a cookie and smiled in between bites seeming happy but not surprised. "What does this mean?"
This means that the quarantine is lifted. Kinsey will be able to go to school. She can come for clinic visits (after school) once every two weeks at first and then when her counts all come up to normal—once a month. Later we can shift to once every other month, then every 3, every 6, then annually. We'll keep her on the one pill she's currently taking (so as not to change a thing since whatever we're doing is working) and then when her counts are normal, we'll take her off that and see what happens.
Wait, wait—school? She can start first grade? Clinic visits every two weeks (not days?) and then did you say annually? I actually asked him if we reached that point—but were too nervous to live with it—if we could just swing by for labs a bit more frequently. They laughed and said a lot of parents have trouble weaning themselves away from frequent hospital visits. How bizarre is THAT thought? Yet I understand it totally. We don't go back until the 19th and I'm counting the days and anticipating her newest set of numbers. People were congratulating us and high-fiving and while Kinsey was soaking it in, Audrey and I kept questioning. Could it be so? It was so beyond the very best news we thought we could hope for at this point. How could this little girl who had this horrible, unrelenting disease the day before (as far as we knew) suddenly be almost well? How could it be so?
The simple answer many keep giving us is that it is a miracle, and perhaps it is just that. But it certainly isn't a storybook one. Don't get me wrong, I'll take it—whatever it is, but a storybook miracle wouldn't be preceded by 17 months of hell, of pain and fear, heartbreak and tears, work and struggle of the heroes and dragon slayers who have helped create this "miracle." It's not that I don't want to give God credit. He's a dragon slayer in my book, too. But He did have a lot of help on this one, and I can't help but selfishly wish it had happened a little more quickly and had a definitive end to it.
As wonderful as this news is, it's frightening as well. A bone marrow transplant is definitive: it works and you are cured of the original disease (even though it may cause you lots of other short and long term problems) or you die. With an immuno-suppresion response—the chance of recurrence is about 30%. However, Margolis says not to pay too much attention to the stats as "Kinsey defies all data." A recurrence COULD happen in months or years.
Margolis says, "The dragon is on an island and we hope no one builds a bridge." Jillian says, "If someone build a bridge for the dragon, we will cut it down and set it on fire!!!" I wonder, "Is the dragon in permanent exile or merely on vacation?" Dr. Big Dog was quoted on the cover of today's Louisville Courier Journal as saying there is as much as 50% chance of recurrence. I emailed him immediately and asked what was up with that 20% shift upward. His response: "Don't obsess about the numbers. They don't apply to your kid."
And yet, as happy as we are—we are struggling a little with the new reality of learning to live on the alert for another dragon attack while going about our daily lives. Cancer survivors do it, just as I suppose some victims of heart attacks or stroke do. And I know as more time passes, it must get easier. My big sister who is a cancer survivor, reminded me today, "Karen—IF it does come back the worst that can happen is that she will have to have the transplant—which you already accepted as a definite." True, very true. And even though we are afraid of yet another twist or turn—we can't stop smiling. We feel a new energy, have a new outlook. There's a lot of joy in our house right now.
I asked Audrey what she was really feeling and she said absolute joy and relief—but beneath those emotions, still some fear that it was just a blip and not a trend, the positive projections for the future a bit premature and perhaps dead wrong. I told her I felt 7 parts pure joy and happiness and elation, 2 parts fear (regarding the other shoe dropping soon or later), and one part resentment that this "miracle" couldn't be a little more storybook.
I HATE to sound even slightly whiny in the midst of our very own miracle, but it does make me think of my grandfather who said, "Why is it that when something bad happens to you, people always talk about how lucky you are? Why—you can be in a car accident and break both arms and one leg and everyone will say the same thing: 'You's lucky you didn't break that other leg'."
Like with Teagan—I got a little touchy about being told how lucky we were to have her as a perfect match. Again, don't get me wrong—luck was involved and we were blessed, very blessed BUT Teresa went through 10 months of drugs, bleeding, tests, in addition to the normal stuff of pregnancy and we spent more than $20,000. Teagan didn't just drop out of the sky. Audrey summed it up best: "It may be a miracle, but the Lord helps those who help themselves." And while I, too, may be willing to accept this as a miracle—I said to Audrey—okay:
In our case
And we are calling this a miracle? My grandfather is chuckling in his grave. But before you accuse me of total blasphemy—let me reiterate the 7 parts of pure joy, happiness, and elation. We are all very, very grateful and do feel incredibly blessed—in ways parents of well children could not know.
And we are all grateful to be rid of the dragon at the moment. We can't stop smiling and celebrating. We are going to a local hotel (3 mi. from our house) to stay tomorrow night in a room right off the pool where we will swim and splash and party. The neighbor girls (Becky, who's 3 and Rachel, who's 7) and their mom, Maureen, are getting a room, too. We used the hotel pool Tuesday night (free) and Kinsey just kept doing cannon balls and couldn't stop grinning. I thought after 2 years, she'd be a little timid around water—but not at all. She and Jillian (and even Teagan) and their best buddies from next door couldn't get enough! So we're going back. We can't seem to stop celebrating.
As for what's next in this saga—the plan is for her to start 1st grade (she and I are both excited about shopping for regular school supplies). She will go to clinic visits (after school) every 2 weeks and continue taking the one little pill she's on each day along with monthly breathing treatments. Assuming her counts will come up to normal in the next couple of months—which is Dr. Big Dog's "hope" based on what he saw in the marrow—he'll stop the pill and watch. If they remain normal, we'll go to monthly visits and then every other month, every 3, every 6, annual.
If her counts DO NOT come up to normal in the next few months OR if they drop after removal of the immuno suppression drug or at any point, he'll transplant her. As for the quarantine being lifted and her going to school, he says, "If she can't live in the real world, we'll transplant her." But," he added, "No doctor would transplant her today."
For now, we prepare for the first day of first grade. I prepare to return to work (for the Endometriosis Association, a wonderful international organization with headquarters here in Milwaukee). Jillian gets to return to gymnastics and perhaps start preschool or dance. We will turn our minds toward paying down some of the incredible debt this miracle has cost. And we will try to wean ourselves from the hospital—our safe home away from home, the place that employs the main miracle-making man and other staff who saved our little girl. We sample normalcy, a new normal. We swim and play and continue to enjoy each day together.
As for the dragon—I hope he dies on that island, alone and lonely. But should he reappear in our lives, we've got our ace in the hole: that beautiful baby girl who is growing and getting more adorable every day. Dr. Margolis said the bottom line was he thought Kinsey was going to grow up and do whatever she's going to do (which will no doubt be something very special) with or without a transplant. If this remission is forever—without. If not—with. Ironically, she still seems the least surprised and I reminded her of her words when I told her Teagan was a match, "Great. Hope I never need it."
About Teagan, one reporter (from the Louisville Courier Journal) asked Teresa yesterday how she felt having been a surrogate when it looked like the baby's marrow wouldn't even be needed. She said, "Are you kidding?!? I adore that baby. Karen and Audrey adore that baby. We all hope she never needs to be a bone marrow donor and we wouldn't change a thing." She is the greatest of many gifts to come out of this nightmare.
On the very day we received
news of our miracle, we met a mother and her daughter who had just received
the diagnosis of Aplastic Anemia. The little girl is 10 and the hospital
staff asked us to talk with them. I told them they wouldn't want to hear
it right now and wouldn't believe me anyway—but there would be many good
things to come from this horrible journey they were beginning. And I told
the little girl, "When you go to college, you will look back on this
period of time as a significant, meaningful blip in your life, but in
the great scheme of things—just a blip nonetheless." I've told Kinsey
the same and I pray she will even forget many of the more horrid details
as time passes, even though I hold no such hopes for myself.
Karen
P.S. We've said it before, but thank you all again for sharing this incredible journey with us. Thank you to all of you who have stuck with us and not tired of the roller coaster that has been our life for 16 months, 2 weeks, and 4 days. Thank you for your prayers, positive thoughts, emotional support, and many other gifts.
And should you think this is a sign off—it's not. It's not over yet. A friend who helped organize a bake sale fund raiser tomorrow for Kinsey asked yesterday if they should still do it. I said, "I don't think this means we can quit paying the medical bills." She laughed. But, seriously, we couldn't have made it through the emotional OR financial aspects of this journey without help and there are a few powerful dragon slayers among you who helped a lot. Between those gifts, lemonade stands, rummage sales (thank you Diane, Jennifer, and Maureen), and credit cards, we're hanging in there. We got ALL the taxes we paid in back—since our medical expenses alone exceeded our total income for the year. The bills will be paid off before Kinsey finishes college (I hope).
Finally, check out this website soon for a new feature coming very soon: The Dragon Slayer Page. And don't forget to mark your calendar if you haven't already for the Feb. '04 Kinsey Is Well Party. Make your list of all the reasons you can't go and then tear it up and make reservations.
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