With a group of five year olds, all students at St. Michaels All Angels Pre-School, we gathered at the park beside our New Mexico house. It was Saturday, September 16, 2001—days after the Sept. 11 attacks; it was also Kinsey’s 5th birthday. She had asked her friends to bring a book for a homeless child living in a shelter—in lieu of a gift for her. We were VERY proud of her for that, but assured her she would have a wonderful present coming from us. She had asked for a piñata, and I decided to make one (a hot air balloon) with her—a process that involved lots of glue, strips of newspaper, and hours of drying time. She was excited about that until the first strip of paper hit the glue and she said, “This is yucky!,” leaving me to finish the three day project. Aunt Ann was there, as she had been for every birthday. It was a beautiful New Mexico day with gorgeous views of the Sandia Mountains from the new home we’d lived in for three months. Kinsey didn’t know it yet, but in a few days we were going to Walt Disney World!
On September 20, 2001 (after planes were once again flying with many empty seats) we set out for Orlando and Kinsey’s great 5th birthday adventure. The parks were so devoid of people that we never once waited in line. There were just enough brave souls to keep it from being eerie. We had a blast—well at least 4 of us did. Jillian, who was two, was terrified of all characters except Cinderella (one of the few with a normal sized head) and she missed her “babies” terribly.
Our own personal September 11th wouldn’t come for another 6 months. We look back at photos of that trip, as well as the Christmas that followed, with a mixture of sweet nostalgia and intense sadness. It was the time that we will forever think of as “before.”
With Kinsey’s diagnosis of aplastic anemia on March 21, 2002—the Dragon entered our life, and time from then on would be known in our family as “after.”
A comparison of September 16, 2001 and September 16, 2002 could not be more dramatic. More than the fact that it was her birthday, we celebrated the fact that Kinsey was alive. Following a 4th of July parade in Wauwatosa, WI that summer—Kinsey casually mentioned that five would be pretty young to die. “I know it would seem kind of old to some people like Jillian or other 3 year olds,” she had said, “but five really is pretty young to die.”
Despite the odds, she hadn’t died at the ripe old age of five—leaving me to ponder the question: what do you give a six year old for her birthday who may very well not live to be seven? We sat on the bare floor of our furniture-less, newly rented duplex—around two rectangular plastic tablecloths, pizza boxes opened and paper plates all around. There were no school mates. Kailee, one of two invited hospital friends came, one young adult friend from Kathy’s House (Laura, who was battling an eating disorder), and the new next-door-neighbor kid—Emily, who was twice her age but, like Kinsey and Kailee, a survivor. Aunt Ann was there of course. There were no grand presents, nor grand gestures of charity—just a small group trying to be as festive as the circumstances would allow. And we did have a piñata—which only Emily was strong and healthy enough to hit very hard. In Kinsey’s case there was the matter of the still-present IV backpack as well. I, however, took a swing at the store-bought pinata myself thinking of the Dragon. Candy rained down on a carpet remnant in an otherwise empty basement.
Within days of that party, Kinsey asked me from the other side of the kitchen island if I thought she’d have a seventh birthday party. I knew she was really asking if she would have a seventh birthday. I said, “I don’t know sweetheart, but I sure hope so. I think you’ll have at least another 80 or 90 parties, and I hope to be there for at least the next 40 or 50 of them. But we never know for sure, do we?” She smiled and agreed, seeming satisfied with my vote of confidence. But it was a tough time. Kinsey was not tolerating her medications well and needing transfusions every few days. She was in and out of the hospital with infections and liver problems (due to the medications). Whether that birthday would be her last or not was a valid question that weighed on all our minds. By that point all the medical professionals would say was that with a transplant, she had a good chance. But we still didn’t even have a donor. We were still waiting for Teagan to be born and we didn’t yet know if she was a match.
On September 16, 2003—Kinsey did indeed turn seven. She had just started school—1st grade, having been declared in remission the prior month. She didn’t have much hair and was worried she’d be mistaken for a boy (a fear which proved founded multiple times—even when she wore dresses). She didn’t have many friends by the time her birthday rolled around—only having been in school for 2 weeks, but she invited several of her new classmates and neighbor friends to join her for a birthday party and sleep-over. We were still in shock about her sudden and unexpected “remission,” and were fearful that it would be a “blip” and not a “trend” on the seemingly never-ending roller coaster—a dark and scary ride with the dragon monitoring the controls. She would continue to take immune-suppression chemo-therapy for another 8 months—with counts slowly climbing toward normal. We took her to American Girl Place in Chicago to celebrate her birthday, the end of quarantine, another new kind of normal.
On September 16, 2004—Kinsey turned eight. To celebrate the occasion, she invited ALL the girls from her 3rd/4th grade class (having spent only 2 ½ months in 1st grade before moving to the 2nd the prior year). Twelve little girls (plus two little sisters) joined her for the party and all but one stayed the night. As the mom who coordinated games, crafts, and activities and slept a few feet away—it was a long night, but a wonderful night. Once again, Kinsey chose to be charitable and this time asked her friends to make a donation to the Aplastic Anemia Foundation in lieu of a gift. Our gift to her was the party, as well as a dinner party a few nights earlier with family. The other thing that happened on September 16, 2004, was that Kinsey had her first report of all normal blood counts in 2 ½ years.
These four birthdays represent milestones just as all children’s birthdays do—and then some. For Kinsey, waking up each day was a reason to celebrate for 17 of the 36 months between turning 5 and turning 8. They were not the only milestones during that time period however. There are other dates and moments that we will forever remember—some of which we will always cherish and others of which will forever haunt us (“us” meaning her parents as Kinsey seems to have forgotten a lot of it and seems much more ready to move on).
“D” Day for us will always be diagnosis day—March 21, 2002, ironically Dr. Margolis’s 39th birthday. May 9 of the same year, I flew with Kinsey by air ambulance to place her life in his hands. He would diagnose a raging lung infection the following day and tell us she probably had four weeks to live. He would also stay true to his promise to “work his butt off to save [our] child.” I often quote the “four weeks to live” statement, but the one that followed it was important, too: “All bets are off, but I still think one way or another we may be able to save her.” One way or another indeed. The next day was Mother’s Day. Audrey and Ann arrived with Jillian.
It was a few days later that Dr. Margolis suggested we call in hospice. We declined, considering that the same as admitting defeat (we’ve since learned the value and broader function of hospice).
May 16, 2002 Jillian turned 3. The “party” was in Kinsey’s hospital room: 5518. To call it a party would be a joke. It was a pitiful effort at joy and celebration. We would get better at doing that later—despite the circumstances, but we were only 7 weeks into the “after” period and weren’t good at anything yet except crying. Jillian recently summarized her memory of that birthday. “I got a Barbie stroller and I wondered if Kinsey was going to die.”
There was that day in June, 2002 that Teresa called to say she was pregnant. I don’t know the exact date but remember we were all in the van driving toward the Rainforest Café in Gurnee, IL (one of the first outings after Kinsey’s hospital release).
There were the days she thought she’d miscarried, the day she was even hospitalized for bleeding, and the day I stood with her watching that little heartbeat on the ultrasound screen—Teagan’s, as tenacious as Kinsey’s spirit.
There were the biopsies and hospitalizations: Kinsey, skin and eyes so yellow, pretending with me to be surgeons as we carved pumpkins. Kinsey dressed up as a magician, Jillian a rabbit, Margolis a Packer. Trying to coordinate directed transfusions and estimating the timing. Transfusions, transfusions, and more transfusions. Changing bandages, administering IV meds, breathing in, breathing out.
There was the wonderful day when Dr. Margolis called us to say that “the baby” was a match! We were not alone in our hall dancing in the hospital. Nurses actually clicked their heels together, clapped, and squealed. Kinsey was cool about it but clearly relieved and excited in her hospital school room.
January, 2003 brought a new year and our Make-A-Wish Trip to Walt Disney World—such a different trip to the one just 16 months earlier! Twenty-three of us celebrating the coming demise of the dragon. Even Teagan joined us from inside Teresa’s belly.
She would make her appearance a full month early the following month on February 20, 2003, creating another milestone and a date to celebrate annually.
The next month we would go to the John Walsh Show in New York. Kinsey’s counts were dropping so rapidly that we could only stay 3 days and had to get a transfusion before flying home but it was a great experience and a morale booster. We had, it seemed, thousands of people cheering the dragon slayers on. Prayers from around the country and from people of many different faiths. How could we lose? Yet, we all knew we still could.
After April 10, 2003—Dr. Margolis said Kinsey could go to kindergarten 1 ½ days a week until the end of the year. Between hospital visits, transfusions, and other scheduling considerations—she managed to actually attend about 10—12 days total. She hated the questions about where she’d been that morning or the days prior. She hated telling the other kids she was sick. She hated feeling disoriented and out of sync with the routines. I still remember her standing in the wrong lunch line and holding back tears when she was corrected. As for the learning, she was ahead and has stayed that way.
Teagan reached the magical weight of 11 pounds at only 4 months old—having fully made up for her premature entry into the world, and the transplant was scheduled for June 30, 2003—another date I will never forget.
On June 8, 2003 we had a final pre-transplant Dragon Slayer Celebration at Six Flags after tanking Kinsey up with platelet transfusions. We went one last time to Six Flags on my 41st birthday June 19. The last transfusion she ever had was June 18 in preparation for that trip. It was from Sean, likely her 110th. We had no idea it would be her last. The following week she attended an art and drama day camp—a last hoorah before isolation and long term hospitalization. She finished on Friday. We had our heads shaved on Saturday—grateful that, for whatever reason, she hadn’t needed a transfusion that week. She went in on Monday for a final check prior to admission and that’s when the cold caused a delay. The one week delay was extended to three and by then all had noticed that she STILL had not needed a transfusion. Transplant was put on hold. We were put in quarantine, and her counts were monitored before another biopsy was ordered and performed.
During that time, on July 4, 2003, baby Gen died—the little girl who had been in the room next to Kinsey for that first long month. I went to the funeral but we didn’t tell Kinsey about Gen’s death until Gen’s brother Paul died a few months later at 5 weeks old.
For some reason the exact date we got those biopsy results is not one that any of us recalls, although we all remember the details of the conference with Dr. Margolis on that August, 2003 afternoon. I must have seemed silly saying, “What does that mean—‘remission’?” and “You mean we shaved our heads for nothing?” As startling as “remission” was the statement: “You need see about getting her in school.” To go from quarantine and occasional hospital school to first grade in the public school across the street from your house is pretty amazing. Before school started, on the first day the doctors would allow after Kinsey’s central line was removed, we took Kinsey swimming. She took the dragon along for a dunk in a memorable and glorious swim. A few weeks later we took her to Wisconsin Dells to one of the world’s largest indoor water parks, but nothing would compare to that first swim after two years. Even in the bathtub, she had a delightful time splashing for a change with no tubes dangling from her chest, no aqua guard.
In January, 2004—we kept our promise to return to Disney World sans IV pole and backpack, sans pre and post transfusions, and with a green light to ride the wildest and fastest rides her height and Disney rules and imagineers would allow. This time only 14 of us gathered to celebrate the Dragon’s decline. As promised we stayed twice as long—10 days (which made an annual pass most economical, and would inspire us to return yet again to the Happiest Place on Earth).
After six months of watching Kinsey’s counts climb toward normal, Dr. Margolis gave us the okay to consider leaving Wisconsin. While we will always have a fondness for the place, there was no longer anything to keep us there. I hated my job and longed to work for an organization more closely related to our experience. We also decided we wanted to be near family despite the fact that that meant moving back to Kentucky—a rather conservative place for two moms. And so I found the ideal job working for the American Cancer Society—the organization that sponsored researchers who developed the bone marrow transplant regimen—in Louisville, Kentucky near almost all of our relatives. Friends in Tucson, Albuquerque, and other places continue to help sustain and nourish us and we are so grateful for all our friends and family and the role they played in helping us survive the last few years.
In May, 2004, I began working, commuting to Milwaukee each weekend and Audrey and the girls joined me in June. On June 8, 2004, Dr. Margolis took Kinsey off all medications. Her counts continued to slowly climb over the summer. She will have monthly blood tests until at least June, 2005 and then may go to bi-monthly, and then quarterly, and then every 6 months, and eventually annually for the rest of her life.
Just before we left Milwaukee, Stephanie Ott (the young girl who came from W. Virginia to Milwaukee, to Dr. Big Dog, after her parents were inspired by Kinsey’s story) lost her battle to aplastic anemia. She was 14, and though we knew her for a short time—we think of her often and of Jeff and Susan, her parents who continue to grieve. Stephanie, like Gen and Paul, are among many angels we have met during this journey. These are kids who are incredibly brave and who endure more and yet have more life in their few years than many who die at 80. Their brief lives continue to inspire us and we remember them in our hearts.
On September 4, 2004 we held a Memorial Service for the Dragon. About 30 friends and family gathered to celebrate the death of the Dragon. Audrey wrote and read the eulogy. We cremated the dragon and have sent his ashes (per Kinsey’s wishes) to a landfill in Texas. In lieu of flowers we have requested that anyone who would like to do so send a gift to the Aplastic Anemia Foundation.
On September 11, 2004—Audrey’s brother James lost his long battle with cancer—giving our family another reason to dislike that infamous date. The girls had gotten really close to their Uncle James and spent time with him in the weeks prior to his death. We miss him and our hearts ache for his wife Sandy and their children and grandchildren. The last time Audrey and I saw him we were on a mission to Indianapolis (where he lived) to pick up a puppy. Kinsey was spending a week at a kids’ cancer camp and we had taken Jillian with us to pick up a little “surprise.” They had begged and begged for a puppy—Jillian for years, Kinsey for months. All the excuses (Kinsey’s illness, rental house rules, uncertainty and overwhelm) seemed to have faded enough that we were ready to take the leap. James was a great dog lover and was very approving of our choice. He was excited for his little buddy Jillian, who made no secret that part of the reason she loved to visit Uncle James and Aunt Sandy was to see Penny, his dog. Her first words when we told her Uncle James had died were, “Who will take care of Penny?”
So Reese (the color of peanut butter with a nose, tail, and ears dipped in chocolate) entered our family, bringing the total to 6 Morrison females. While Kinsey was THRILLED to see the surprise when she climbed off the Camp Quality bus and continues to love the dog, Reese is and probably always will be Jillian’s dog. Of course, Teagan is Reese’s favorite buddy during meal times as she tends to drop the most food and even purposely hangs a few scraps down low enough to be snagged. At other times, Teagan is not so kind, however, and has been known to get a little jealous. They steal each other’s toys and Reese is a bit more good-natured about it. Fortunately, when Teagan pulls Reese’s tail or tugs on her leg or yanks the hair around her mouth, Reese only growls and backs away. When Kinsey and Jillian get off the school bus and round the corner, Reese is there to greet them and seems each day to become the happiest dog on Earth: “They’ve come back to me!” I must confess, as much as I tried NOT to, I’ve gotten pretty hooked on this little 10 lb loveable fur ball myself. Audrey, too, has developed a soft spot for her and—of course—has added the bulk of dog care chores onto her already full plate of household duties. Yes—the girls may love her, but they don’t pick up poop or even remember to let her out to poop. Were it left up to them, she wouldn’t have enough to eat to ever need to poop!
Reese, overall, has been one more sign of our ascent into “normal” family life. After the FIRST normal blood counts on her 8th birthday, Kinsey has since has two sets of subsequent normal counts in October and November respectively.
And as I write this, we are returning from yet another trip to Walt Disney World, having felt it necessary to get our money’s worth from those annual passes. It’s only a 16 hour drive from Louisville and Teagan traveled by plane with Aunt Ann so it’s bearable. We’ve spent seven days at the happiest place on Earth (where we witnessed some of the most miserable parents and children) and we have had a delightful time together as a family. Teagan, like Jillian on her first trip 3 years ago, kept her distance from the characters and enjoyed Dumbo the flying elephant over and over and over. We swam. We rode. We ate. We laughed. We occasionally got tired and irritable but never for long because never too far from our minds were our prior trips—especially the one “before” and the one with Make-A-Wish. And one day, walking down Main Street toward Cinderella’s Castle in Magic Kingdom I reminded the others of the time not so long ago when we talked of the possibility of a trip to Disney World to scatter the ashes of a little girl who so loved its magic and thrills should she die. How joyful it was to be there with her in the flesh instead. And not only does she have PLENTY of platelets, she reached 52 inches—tall enough for the biggest thrill rides. We rode every single one. And some of them more than once.
February 20, 2005
Another milestone today—Teagan turns two!
We celebrated yesterday with family and friends and lots of cake and presents.
Today, I am off to Arizona—on the plane as I type. Audrey and the
girls, with Reese in tow, just dropped me off at the airport less than 5
hours ago and already I miss them incredibly. Kinsey and Jillian behaved
as if I were going off to war. Teagan napped, and I think Audrey dreaded
getting them off to school without any morning help and perhaps getting
them bathed and fed and to bed without any help, too. I feel guilty but
duty calls. In the old days, Audrey and Kinsey would have joined me. Even
after Jillian was born we did that a few times before we had to pay for
her airfare. But now we are a family of five with a dog and girls in school
and NO disposable income for such things as airline tickets or car rental.
Our world has changed immeasurably in the last three years. While we have
considerably LESS money post-Dragon, we have each other and are rich beyond
what we used to imagine.
Days after I finished the prior “update,” we celebrated Christmas and hoped for a post-Christmas present of Normal Labs #4 when Kinsey had her blood drawn on Dec. 28. However, our wishes were dashed when her white count took a dive to 2.8 (normal is 4.0—13.5). Dr. Big Dog said not to worry but that we could recheck in two weeks. We did and it had gone back up to 4.0, leading us to believe an undetected virus probably caused them the drop a little. Last week, she had them drawn again and the white count was 3.3. Her platelets had also dropped from 367 to 297 (about average). I wrote an email to Dr. Margolis and said, “While this drop in white count and platelets does not terrify me, it does continue to frustrate me.” He wrote back, “Please do not be frustrated. Her counts are FINE!!!” He says it, it’s so. Therefore, I refuse to worry at this point and we continue to look forward to June when she will get to move to every-other-month labs.
In the meantime, we try to keep up with the other kids who are not doing as well. Kailee Wells had her transplant last month finally and was “doing well” at the last report. We know she and her parents Linda and Owen have a tough battle ahead and that the odds are not in their favor but we continue to hope and pray Kailee, like Kinsey, will beat the odds.
As a board member of the Aplastic Anemia Foundation, I continue to occasionally talk to parents of newly diagnosed children. Just last week I talked to a mother of another Kailee (age 4) who was diagnosed two weeks earlier. Kinsey seems both proud of me for doing this and a bit annoyed that I persist in keeping the topic anywhere near our lives. She prefers to focus her volunteer efforts with Make-A-Wish—a bit lighter from her perspective at least.
Last month, she, my niece Payton, and I went to the Ronnie Milsap, Crystal Gayle concert as guests of Make-A-Wish and Kinsey and I spoke to the audience of thousands. She was nervous but phenomenal. I was so proud of her to have the nerve to talk in a microphone on a stage with glaring lights and thousands of people looking at her. She was a big hit, and they said I did okay, too. We met Crystal Gayle at a reception and it was funny the way she and Payton behaved. They had never heard of Crystal Gayle or Ronnie Milsap and all I could do to prepare them was sing a few bars of “Don’t It Make My Brown Eyes Blue” and “What A Difference You’ve Made In My Life.” When Crystal Gayle walked in the room, Payton said, “Hey, look at that woman’s hair!” with something less than admiration. When I said, “That’s Crystal Gayle,” they both began behaving like teenage roadies, giggling and wiggling. They got to see Ronnie Milsap who was meeting some blind kids backstage as well. Now they’re fans and my mother who LOVED Ronnie Milsap before her death 25 years ago would be so proud that she has two granddaughters who can sing the words to many of the songs she herself sang.
Jillian recently had surgery (tonsils, adenoids, and ear tubes) and it was quite different for her to be the “patient.” She actually handled it better than Kinsey—who thought sure she would be forgotten and neglected during the two week recovery and beyond. Now that we’ve just finished those two weeks, I think it was good for both of them. Jillian learned it’s not all fun (although the popcicles ARE great) and Kinsey learned a little empathy and perhaps a little insight into what Jillian may have felt much of the time when the world revolved around Kinsey the patient.
What Kinsey said in her Make-A-Wish remarks was that for two years she practically lived in the hospital and was “the patient,” “the patient,” “the patient,” but for a brief time, thanks to an organization called Make-A-Wish, she got to be a “princess” at the Happiest Place on Earth. These days, I think they both feel more like princesses than patients. And Teagan has no clue of what it’s like NOT to be a princess—although she knows well there’s competition for the tiaras that rest in the bottom of the toy bins or liter the closet floor. After all, these days, even when Kinsey and Jillian are off at school and she has them (and all the toys as well as her Mama) to herself—Reese is likely to be off in a corner chewing one. These are the things our days are made of, and the things that are most likely to produce tears these days. How sweet it is!
March 21, 2005
Three years ago today, the Dragon was born, or
at least we became aware of his existence. Despite the fact that Kinsey’s
white count is still lagging, today we celebrate and we toast to Dr. Big
Dog who turns 42 today, to dead dragons, and to dragon slayers!
March 30, 2005
On March 25, Audrey and I celebrated the 10th anniversary
of our commitment ceremony, which took place at the wonderful home of our
dear friends Jim and Jill Rich in Tucson, Arizona. We had a lovely dinner
together (thank you Diane for the gift certificate) and didn’t have
to cut anyone’s food for them (thank you Ann for overnight child care)
and we talked about all that had happened in those ten years that seemed
to have passed in one sense in the blink of an eye and yet in another sense
seemed to have spanned several decades. “If I had told you 10 years
ago tonight that we’d have even 2 children, let alone 3 . . .”
“If We’d known 10 years ago tonight we’d have endured
and survived all we have . . .” “If someone had suggested we’d
be back in Kentucky . . .” All true, no matter how unbelievable. And
Kinsey’s latest labs—taken on March 24—all normal again
with a new record for the white count: 4.6!!!!!
As a child who has fought a life-threatening illness, Kinsey spoke to an ad hoc committee of city council in favor of a proposed ordinance to ban smoking in public places in Louisville. As usual she did a beautiful job and was the only speaker to receive applause (I did not). She has continued to prove herself to be a fighter—for causes she believes in, for injustice in the world, and with her little sisters and occasionally parents. Yes, life continues to become more “normal.”
The night she spoke, she fell into a chair and the next day had the most horrible 4-5 inch bruise on her side. I had already noticed a few big bruises she had no memory of getting (I can’t help but watch for them), so the sight of this new bruise made my heart start pounding. I thought I would be sick. The hours before the lab results came back were long. But when they did—another day to celebrate! It’s so easy to spiral into thinking, “It’s starting all over again!” But it’s not. Not today. Today all is well with our world.
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