Where to start? So much has happened in the last couple of months. So many details stand out, it’s as if I can replay them in my mind in slow motion. Yet, in another way, the last weeks seem a blur; as if they whizzed by so quickly I’m not sure I saw them, let alone lived them. I only know it’s been a couple of months (since the last update) because I checked. Time is so hard to track. Audrey and I decided that it must be because we have no typical days, no typical weeks. We may spend a Sunday morning at the clinic (as we did last week) or we may spend the night in the ER (as we did last week). We may think we’re going into the clinic for quick labs and will get to go home and end up being there for 18 hours (as we were one day last month). And then there are the sudden, unexpected overnight stays at the hospital, too. We’ve had four of those recently (or has it been five?).
Rather than start at the beginning (in this case where I left off), I’ll start with today and then try to hit the highlights backward.
Today—we ate pizza for breakfast at Chuck E. Cheese. We played so many hours there that Kinsey skipped school. It was great, and the pizza was edible. Despite my chasing her with hand-washing stuff, Kinsey had a great time, as did Jillian. I lost SEVEN games of air hockey (four to Jillian, two to Kinsey, and one to Audrey)...I only played seven games of air hockey.
After that family adventure, Audrey had to go back to work for the 8 or 10 students who show up each session. The kids played in the small pile of remaining snow and rode their bikes while I finished (finally) putting up the Christmas lights. They played with a friend next door, Emily, and all came in to warm by the fire and bake brownies while I cooked dinner (stuffed pork chops, beans, corn, mac and cheese, dinner rolls, and cranberry salad—hope those of you who know me are impressed). Kinsey and Emily did their homework and Emily stayed for dinner, after which I served the girls “tea” and brownies for their tea party in the floor between the fire place and Christmas tree. Then we allowed them to open one package that had arrived in the mail today.
It was then time to clean up, put on pjs and read a couple of stories. Audrey and I tucked them in, turned on some lullaby music, and set off to get a few things done before retiring ourselves.
Now—doesn’t that sound nice? Doesn’t that sound like a typical day at the Cleaver household? Of course, I left out a few details—like the morning medicine ritual, which includes unhooking Kinsey from the 12 hours of two IV meds she’s had all night and hooking her up to yet another, and giving her 6 oral meds, hoping she doesn’t throw up (as she did last night). The “middle of the day” meds are easier and fewer in number, but at night, we do the morning routine over again (except in reverse for the IV hook up—as she gets another short IV med before the 12 hour ones begin). Oh, and I left out laundry, too.
But, seriously, today was a great day. A really great day. The last two days we’ve spent with a reporter from the Milwaukee Journal Sentinel. They are doing a story on Kinsey. We spent one day at the hospital all day (where Kinsey got platelets and attended school) and yesterday at home. The reporter stayed with Audrey and Kinsey while I took Jillian to gymnastics (where she is learning to be a star tumbler and bouncer).
Okay—enough of the day-by-day routine. You get the picture. Our lives are going along as we learn to live with the dragon. While he is not a welcomed visitor to our home, we have learned (mostly) to accept his presence and continue to work toward his departure. Our lives revolve around the hospital. We are there at least 5 days a week. Some days just for the one hour of school but more often than not for many, many hours. But we feel “at home” there. We know nearly everyone. We have food in their fridge. Kinsey takes her own vitals and we usually get to stay in “our” room—16. We feel safe there and the only thing we HATE (other than bad news) is the parking, which really means “the tour” (of the open lot and the parking structure, usually more than once).
The news has been bad and good as the roller coaster ride continues up and down, up and down. The big news flash, the BEST news in about 8 months, was that the baby is a PERFECT MATCH!!!! This significantly improves Kinsey’s odds of survival from about 20-30% to 65-85%.
After Kinsey’s numbers started to drop, she developed another infection. This time in her sinuses—nothing serious for a well child and treatable, they thought, even for her. So treat it we did—with an antibiotic. Then her liver numbers started to go up, up, up. She began to turn yellow, yellower, and her eyes almost glowed as the numbers climbed, indicating poor liver function. They did CAT scans, X-rays, ultrasounds. They showed nothing. The doctor took her off possible offending medicines and the numbers still climbed. She was admitted for a liver biopsy—which showed nothing and her numbers began to level off but stayed very high. They did a stomach MRI. It showed nothing. She saw a specialist. He said, “Be patient,” as he believed it was simply a reaction to a medicine. Ultimately, we learned it was a reaction to that antibiotic she had been given for the infection. She stayed off many old meds as they gave her lots of new meds to help the liver. Slowly—very slowly—it began to get better.
Doctor Margolis continued to hold off on treating the Aplastic Anemia, in particular doing the Rabbit ATG immunosuppression (which requires 6 days in the hospital in isolation) until the liver issue was resolved. Just as it got back to its prior level (which was still way above normal), she began to get a bad cough. Another CAT Scan showed the sinus infection had probably returned. Rather than give her antibiotics again, they chose to do sinus surgery—so we were in overnight for that (last week). The surgery went well but a culture taken during it did come back positive for bacteria—a very common sinus bacteria. So they had to do some antibiotics anyway—but tried a different one, one she’d had before with different side effects (nausea and aches). She is now much better and has only three more days of that med.
For most of this time, she ran a low-grade fever, which we all tried to ignore. (Everyone was successful except me: I had to take her temperature several times a day just to KNOW.) At one point, when Dr. Margolis was out of town, her fever spiked and we called. It was a Sunday and the other doctor on call insisted that she be admitted. However, the next day when it had gone back down on its own, I insisted we take her home. When he said he wanted to keep her to monitor her temperature, I assured him we could do that. He said she probably needed more antibiotics and another CAT scan, but he’d wait for Margolis to come back. I said, “I want her to be HERE when she needs something I can’t do at home, but when you aren’t doing anything I can’t do at home, I want her HOME.” He reluctantly let her go.
Another spike in fever a week later sent us into the E.R. overnight. As her fever had gone from 104 to 98.6 on its own and her labs showed nothing new, they said we could go home at 7 a.m. We elected to sleep in the E.R. for an hour until the clinic opened, rather than going home, sleeping for 30 minutes and coming back. It would appear now that all of this has been related to the sinus infection, but no one is sure. The low-grade fever, which comes so often, is probably associated with certain meds and even the transfusions.
The most recent visit to the clinic brought good news in that for only the second time in 8 months, Kinsey’s red cell count went UP without a transfusion! She is once again making baby red cells and yet no one knows why. Dr. Margolis had indicated that he DID want to hospitalize her for the Rabbit ATG and his “best guess” for when was today (this he said last Sunday). But on Tuesday when her counts showed this bit of news, he said he wanted to sit tight. He told us the story he learned in med school: “When it’s your first night on call and you don’t know what to do: Do Nothing Stupid. Think about it. If you still don’t know what to do, put a comma between the Nothing and the Stupid—Do Nothing, Stupid.” He said he wanted to put the comma between the nothing and the stupid as that had worked with Kinsey before. At this point, he says if she doesn’t get worse, he wants to simply wait for Baby Mo (short for Morrison—or Modine, if you listen to my sister Teresa) to arrive and go to transplant.
The biggest risk with the ATG is that fully suppressing her immune system could make her vulnerable to infection and she could get one that would be fatal. The biggest risk with NOT doing the ATG is that, because her counts are still really low, she could get an infection and not make it to transplant. It’s a catch 22, but at this point he feels low numbers can perhaps hold her for the three months we have yet to wait. But that was a couple of days ago and we know the news could change tomorrow (or even later tonight).
Other news: Kinsey continues to do really well in school and has tested at the second and third grade level in most subjects. She has learned at least 6 months worth in the last three according to the test, despite the fact that she attends school only an hour a day and misses A LOT due to hospital procedures and stays and just feeling bad sometimes (or spending the day at Chuck E. Cheese—just kidding, that was a ONE TIME thing that felt like the right thing for today). She has continued to take acting lessons and has starred in her first play as a rabbit (okay, she didn’t exactly star—but she could’ve and should’ve). She was great, of course—the youngest in the class and the only child to fully learn her lines. She is preparing to do her musical version of the “Three Little Piggies” for a wide audience at the hospital. All is ready except invitations, which we are doing tomorrow. She sings really well and some nurses bring other nurses or staff into her room to listen. She even sang once in front of the nurses’ station. Doctors, nurses, patients, visitors, all stopped and turned and listened. She loves having an audience and performing seems to suit her. She has, unfortunately, incorporated even more drama into her day-to-day routines.
We’ve finally unpacked MOST of the boxes I brought from Albuquerque in a 26 foot truck and are mostly settled in. Much thanks to the Nadolny family, Fran, Cheryl, and my Dad for all the help. Dad and I drove the 35 hour trip (40 miles an hour uphill, 75 down) in 2 ¼ days. Oh, the look on the girls’ faces when we began to unload toys and unpack toys. It was as if they were all new. Audrey now calls the playroom downstairs my “magnum opus.” It was and remains my first priority. Dad told everyone, “Karen gave away furniture to make sure we could fit all the toys on the truck!” Toys and Books, Toys and Books, Toys and Books—“How many G__ __ D___ ___ ___ toys and books do you have?” I have my priorities straight Dad, and toys and books are up there!
Our house STILL hasn’t sold in Albuquerque and we are starting to really panic about that. The only possible hidden positive would be that as long as we have a legal residence in NM, Audrey can probably adopt the baby there. It is illegal in WI (as it was in AZ). Nevertheless, how we will continue to pay rent AND mortgage remains a mystery—one Kinsey may not be able to solve (she LOVES solving mysteries of all kinds—like why the E and the T are both missing from the “Take the Elevators to the Froedert Birth Center” sign. We think maybe E.T. took them!).
The Make-A-Wish Foundation has approved Kinsey’s Wish to go to Disney World. They, however, will only pay for the four of us and Kinsey still insists on making it a full-blown Getting Well Party with lots of people—especially those who have helped her the most to get well. We are trying to figure out logistically and financially how to pull it off. She even asked Santa to help (she also asked him to help her get well and to bring a charm bracelet). The trip will probably take place in January—although we never know what could happen to change that. The “P” word (as we call making plans) is nearly impossible. You are ALL invited, but given the lack of ability to set a date much in advance, etc.—we ask that if you cannot make it, you consider attending the Kinsey IS WELL party about this time next year we hope. Another option we’d like you to consider is to go to Disney World (or wherever YOU think the “Happiest Place On Earth” is with the people YOU love the most. Leave your cell phones at home. Enjoy every moment, and while you are there—think of Kinsey, thank her for the lesson she has taught you (or should have by now), and make a wish for her, for our family of five to be happy, healthy, and whole.
The reporter asked Audrey and me how we would respond to people who would criticize us for “having a child to save a child.” We both explained that we would do anything short of killing an innocent person to save our child. We also explained that this baby, match or not, would be welcomed into our home, our hearts, our lives. She will be loved and well cared for. We told her that while we know we are not in control of this illness and Kinsey’s living or dying, we couldn’t imagine the possibility of losing our child and looking back and saying, “There was something we COULD have done that might have made a difference.” I told her before I gave birth to Kinsey I had no idea about the existence of the fierce protectiveness I would feel—like a mama bear or lioness protecting her young. But that feeling would drive me to the ends of the Earth and back if I thought it would help. I would so gladly offer my own life in exchange, or...or.... So bringing her here, uprooting our lives, leaving my job, taking such extreme measures to have another child with the small chance that she could be a match—it will all be worth it if she lives and it will all be worth it if she doesn’t because we will know we did EVERYTHING we could to save her. Dr. Margolis perhaps answered the reporter’s question better. He said, “There are a lot of reasons to have a child. This is one of them. Until unmarried 11 year olds stop bringing babies into this world, people need to shut up about the ethics of such decisions.” He said he had no doubt this was the right decision for “this family.” That he’d seen “us with Kinsey and Jillian and knew this baby, too, couldn’t have more loving parents.”
Dr. Margolis is still my hero in a cast of heroes, which includes my sister Teresa Kelly, who is carrying this miracle child so lovingly and without complaint despite all the complications and uncomfortable procedures; Audrey’s sister Ann Morrison, who has been here so much since prior to diagnosis and had been a true Godsend, helping with Jillian and Kinsey during hospital stays and my absences in Albuquerque and just always being there, not to mention her help financially and her good cooking; Sean Jones (my nephew) who has given Kinsey 22 donations of platelets, Grandma Nancy who also gave platelets; Mr. Don Vachon, our neighbor and landlord, who is now giving platelets weekly (Sean has almost reached the Red Cross allowed annual limit); Fran MacIntyre (who has worked tirelessly helping and given us her time, her money, her thoughtfulness and kindness); the Nadolnys (a rock of support responsible for the website and so much more); Bettye Pressley (who has helped in so MANY different ways and never forgets that this battle goes on for us 24/7); Jill and Jim Rich (another rock of support—always there and willing to do anything, anytime, anywhere); Hillary Eliot (an inspiration and a realist whose straight talk always gets me back on track); Cheryl and Debbie Dawson (I wish I’d known them well enough when I lived in Albuquerque to appreciate them as I do now); Audrey’s sister Janet Hicks; my sister Diane Howlett; my Dad Jerry McDonald; Peggy Reed; Mary at Dr. Lohman’s office; Dr. and Mrs. Lohman; Michelle from the ARC Aetna office in Hartford; Karen Haxton from the Aetna office in Dover; Nurse Lynnette; Nurse Heather; Nurse Jill; Nurse Carolyn; Nurse Maureen; Nurse Adam; Ms. Char (Kinsey’s teacher and advocate); Dr. Kristin (and all her boxes of Kleenex); Jillian (who has endured so much and prays EVERY night to God to “make her sister well”); Ami and Tom Wholihan; the MRG ARC Chapter disaster volunteers who raised funds and all the staff who donated hours of time to me; the Southern Arizona ARC Chapter Board members; Mike Stanley and Jackie Seguin; Diana Carrillo; Edwina Larner; Debbie Kapp; Lynn Mabry; Marje Waters; Phyllis White; Julie Willson; Barb Carolus; Annie Hoover; Brenna Wallhauser; Krista (swiftswimmer); the Marines; the staff from Kathy’s House; Dr. Anderson and Dr. Inigo; Nurse Roberta and Nurse Claudia; our supportive neighbors—Tim and Tammy Becker (Tammy’s banana bread which has brightened a few days for the kids and me); those who have been tested to try to give platelets—Janet Hicks (again), Ann Morrison (again), Linda Wells, Myra and Dawna Vachon; the stranger on the elevator who told Kinsey how beautiful she was one day when she wasn’t feeling beautiful; Michelle Crawford; Steve Fox (whose spirit lives on in Kinsey and so many others); the Kleins; Kim Householder from Hotshots; Ms. Andrea—the gymnastics teacher who makes Jillian feel special and talented, instead of lost in Kinsey’s shadow; the man behind the counter at the convenience store in the middle of nowhere that late summer night who let us use the outdoor electrical outlet for Kinsey’s IV pole when the battery died; Jana Zehner; Ms. Senda—who calls Jillian Twinkle Toes and fixed the girls’ hair for free before they saw Santa; Georgia Will and her little girl Elena (Kinsey’s first best friend); the staff at Hazelwood; the employees at Louisville's FORD plant; our media friends; all the people I’ve forgotten to mention and will hit myself for tomorrow; and all the many, many family members, friends, and strangers who offer prayers, kind words of encouragement, an ear to listen, funds to help us survive, time, and other kindnesses. THANK YOU all for your myriad gifts. They have meant the world to us and have helped tremendously!
Finally, I must thank the
biggest hero of all in this: Kinsey—who has taught us so much and given
us such gifts of pure love and trust and joy. She struggles sometimes
with her medicines and still gives us a hard time, but she reminded me
just the other day what that was really all about. She had been behaving
badly, acting very angry and I had put her in time out. She said, later,
“Mommy—I know I was showing my anger earlier, but I wasn’t really angry.
I was just scared and a little sad.”
“About what?” I asked.
“Well, Mommy—I’m just not really ready for all of this. I mean I’m just
six years old and it’s a lot to go through. I’ve been through so much
already and I have to do so much everyday that I hate and I probably will
have to have a transplant and I’m a little scared about that and I still
might die—even after all of it!”
I just said, “I know, baby. Mommy’s scared, too. But we have to keep fighting
the dragon and it looks like now, more than ever, we will win this battle
and you will have a long life ahead. I’ll have a long time before I have
to go to Gate Z.” (She had told me previously that she wanted me to meet
her at Gate Z in Heaven after we’d both died. I told her then that I’d
probably die a lot sooner than she would and would have a long wait. She
said I didn’t have to go there until she’d died, too. I told her we had
a date—but I hoped not for another 80 or 90 years)... And that, as the
man said, is the way it is. At least for now. At least for here. And,
at least for a while longer.
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