Kinsey's bag was packed, ready for a long stay at the hospital: books, PJs, favorite doll (Chinetta), a couple of puzzles, clothes, computer and software, large 3-month calendar for the wall, games. She was to go in on June 24th, transplant to occur on June 30. The bag is still packed and sitting in her closet, ready.
On June 23rd, we mentioned and the doctor noticed that she had a bit of a cough and some congestion. "Let's wait one week and let this clear up," he said. Made sense. It was a gift! A whole extra week to prepare—mentally and physically. Final home projects to complete before the chaos of daily hospital shifts and ships passing in the night, a chance for quality time together. These things would certainly be possible because Dr. Big Dog asked that during that week we stay in old fashioned "quarantine." We stocked up on food, broke out the board games, stayed busy and enjoyed ourselves totally.
But by the next week, the cough wasn't better and neither was the congestion. "Let's wait one more week," he suggested. "Great," we thought, "time to get more done and enjoy each other in our own home." Teagan and Jillian and Audrey all had some "cold" symptoms as well, and no one seemed to be getting a lot better. Allergies? Delayed effects from a bout with "para flu" several weeks earlier? We didn't know, but accepted the inevitable.
By the third week, when Kinsey seemed somewhat better but still congested, the doctor suggested a CAT scan. The CAT scan showed some fluid in her sinuses but "nothing unusual." We could probably proceed, but it would be good to clear them out if possible, and there was another issue: her platelets. At each visit, her platelets were checked and instead of dropping as they have regularly for 16 months, they were actually going up on their own! Nothing drastic—19 became 20 became 22 became 29 (normal is 150-450). This change was nonetheless somewhat remarkable in that it meant she was apparently becoming transfusion independent.
The doc put her on sinus medicine and took her off her white cell stimulating medicine "to see what would happen." It was sort of an experiment, the idea being that if she should start producing white cells without the aid of her every-other-night IV meds, he would do another bone marrow biopsy to see "what was going on in the factory." This was enough to get us almost excited, thinking ...what if... What if she really doesn't need a transplant after all? What if she continues to respond on her own and gets well through the "medical management" that had already been declared a failure?
However, the next two visits saw her white count drop like a rock. Neutrophils that had been in the tens of thousands a week before dropped to 700 and tomorrow, we fear, will be lower still. Bottom line: the doctor was 99% sure she still needed a transplant but wanted to be 100% sure. It made sense not to ignore this significant development.
As for the sinuses, since they were still an issue, there was yet another delay to allow time for the meds to work and a second CAT scan to confirm they were all clear. Another visit tomorrow will probably provide the final verdict on the white cells (and will probably mean going back on the GCSF—Growth Colony Stimulating Factor). Monday's CAT scan will provide the answer to the other part of the delay equation and, since she seems MUCH better, we think then transplant will be scheduled once again. Audrey thinks she'll probably be admitted late next week. It probably depends on the availability of the surgeon and others as well as the issue of avoiding a weekend for beginning chemo or actually doing transplant, so my guess is the following week. In any case, the latest guess by the doctor is that she will have the transplant at the end of this month or early next month. We may know more tomorrow. We may not. We may know more Monday or Tuesday (when results come back). We may not.
The third week of "quarantine" was a little less thrilling. And the fourth even less. We were all getting a little stir crazy and going to the grocery became something Audrey and I actually wanted to do: "No, hon, I'll go." "No, no—really—I don't mind." When grocery shopping is something you WANT to do, you know things are a little dull. We were all getting a bit anxious, too, about getting on with the transplant—realizing the delay was now significant enough to impact other plans and throw off our mental time frame ("By Kinsey's 7th birthday, we should be..." "By Christmas..." "She might be able to get her broviac out as early as..." "Day 100 will be here before...," etc.). Scared as we were and are—we were as ready as we could be and that bag was still packed and waiting.
It's been hard on the girls to not play with all the neighborhood kids, for Jillian not to go to gymnastics, for us not to go out to eat or to a mall or movie. But in the great scheme of things, these are pretty small sacrifices. And we have continued to enjoy each other. But the board games are starting to get old. Clue, Spelling Bee Bingo, Sorry, Parcheesi, Yatzee, Clue Jr., Go Fish, Cadoo, Uno... At least two every night. The ones Kinsey LOVES, Jillian hates. The ones Jillian LOVES are certainly NOT Kinsey's favorites, so generally one pick each is the only solution.
If the word "funeral" in the title startled you—-you might have a small inkling of how Audrey and I felt on the morning of July 6 to learn that our little friend Genevieve Emily Winkler died on July 4. She and her mom, Anne, were our next-door neighbors at Children's Hospital for a month, after we first arrived here. That first month we only saw each other's daughters through glass doors as each were in isolation, but we'd talk just outside the doors as they slept. We cried together. Anne showed me where to do laundry and where to find clean sheets. She told me all about her experience with transplant (Gen had had one at 6 months). She had been seemingly perfectly normal and healthy the first 5 weeks of her life—with the rare hematology disorder she suffered from undiagnosed. While we were there she celebrated her 1st birthday, and then she got to go home. She was doing pretty well and it still looked unlikely that Kinsey would survive another month. I missed them terribly. Even though we were mostly marooned along with our little patients in our individual rooms, it was still comforting sometimes in the middle of the night to realize that just on the other side of the wall was another mom and her little girl. She, too, was scared. She, too, was struggling through each day and fighting along side her baby girl for her life.
We continued to see Anne and Gen in the clinic, in the halls—nearly every week. Sometimes, we'd meet and she'd say, "We're in again." We'd give encouragement and listen. Other times, we'd say, "We're in again," and she'd provide the encouragement. Most often, both girls were being seen at the clinic. Each had her ups and downs. Baby Gen (as Kinsey and Jillian called her) celebrated her 2nd birthday in May, right after Jillian's 4th. She had a fever, but Anne waited to take her the following day—not wanting her to spend yet another birthday at Children's. Then the news came that she really needed another transplant. The same unrelated donor was available and willing. Her odds of survival with such a transplant, the doctor told her parents, were about 10%. Remembering all the pain and suffering she'd gone through—including horrible mouth sores, a stroke and a broken leg the first time she tried to stand, they said, "No." Anne was pregnant and the baby boy is due in November. IF that baby were a match and IF Gen could hang on... "No," the doctor told them, "she won't make it 'til then." But what if she could, they wondered. This baby COULD be a match and COULD provide her a much better chance of survival. What were the odds she'd make it until her little brother's birth? "0%," the doctor told them. But they stood firm, hoping against hope she'd make it, and believing if she didn't that she deserved to die in peace without more (likely useless) suffering.
She got an infection in June but was hospitalized and got better. Her counts were "the best they'd been in a long time," Anne told us in the hallway. There was hope. Maybe Hospice wasn't really needed.
The next time I saw Anne was on July 8 at Gen's funeral. There were photos of her everywhere—many with her big smile. She had incredibly chubby cheeks from a brief life time of prednisone. Her fine blond hair had finally grown in after chemo and she had bangs even though her hair still looked more like that of a 1 year old. I saw photos of her as a newborn and imagined what those first 5 weeks must have been like—the illusion of a perfect happy, healthy, whole family. New parents with their first child—a beautiful, perfect baby girl. It was the same illusion we lived under for 5 1/2 years. It was what we had for 5 1/2 years.
I've been to lots of funerals, some of people whom I loved dearly. But I've never been to a 2 year old's funeral. The cliche "At least she's not suffering anymore," was certainly present but most of them don't fit such circumstances. Parents shouldn't outlive their children—especially when that child is a toddler and the parents have done everything right, everything.
The focus of the service was the opportunity for people to get up and talk about their memories of Genevieve's short life. Many mentioned the fact that despite the pain and suffering, she was a happy little girl who smiled a lot and brought a great deal of joy to those who loved her. When I spoke, I said how much Anne had inspired me with her courage and how much Gen had inspired Kinsey with her courage. I said that those 30 days we'd spent together would remain an eternity in my memory and I would be forever grateful for their having brightened them in so many ways. I said that we'd soon be spending another 30 or more days there and that I was sorry for Kinsey and me that Anne and Gen wouldn't be there with us, but that I wasn't sorry for them. I was glad for them that they'd, God willing, never spend another night there (save the one or two following the upcoming birth of their second child).
That night, Audrey asked me why Kinsey was singing at the top of her lungs downstairs. I said, "Because I asked her to." She gave me a puzzled look. I just wanted to HEAR and SEE how truly alive she is; so when she was singing, I asked her to sing louder and louder—until the neighbors could hear. She proved what I knew: right now she is doing great. She has lots of energy and acts like a six year old most of the time. With the exception of her buzzed hair and a few impressive bruises—she could be any six year old just to look at her, just to hear her.
Our neighbor said the other day, "Nothing like this has ever happened to us," referring to Kinsey. I said, "Us neither." He said, "No, I mean we've never even known a child with a serious illness like this before." "Neither had we," I told him, "until Kinsey. She just happens to be our child."
Now, we know lots and lots of sick children. LOTS. And we've known of several children to die. But Gen was the first we've known so well. It hit pretty close to home at a time when home is pretty scary.
We haven't shared Gen's death with Kinsey. We will tell her in time, but the timing was just too awful. It has been awful for us, and we just couldn't put that on a 6 year old who is about to go into transplant. As much as I ached for Anne and her husband Paul, I couldn't help but think, "There but for the grace of God, go I." I kept remembering Anne's comforting words when Kinsey was so close to death and Gen was doing so well by comparison. And here I was, a year later, at her baby's funeral. For her—no more weekly hospital visits, no more daily administering of meds, no more waiting, no more Gen. Only a small urn with a very soft and worn stuffed animal named Snuffles beside it.
For me, for us—lots of uncertainty, fear, lots of hospital visits and a long stay ahead, lots of meds, certain complications and sickness, awful possibilities, a lot of HOPE, and Kinsey.
Karen
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