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I love to get messages from people. Please sign my Guestbook!
February 10, 2008 Dear Friends: As most of you know by now, Kailee, Owen and I did indeed travel to China in December. Each day since then I have thought of writing to you, and many days since then Owen has asked me to do so. I have wanted to share with you some of our experience, yet each day has brought a loss for words. Sure, it is easy to tell about what we did and what we saw, but for me it is far more difficult to answer the one question we have received nearly every day since our return; “What did it ‘feel’ like to meet Kailee’s donor?” How can I describe what it ‘feels’ like to meet the one person in ten million who could save the life of our child? The one person Owen knew was there, if only we worked hard enough to find him; the one person I believed would be impossible to find, if indeed such a person did exist. But he did exist, we did find him, and on December 20th at 10:28 am we met him. The meeting itself was extraordinary, awesome, nerve-wracking, and yes, miraculous. Our friends at CMDP (China Marrow Donor Program) and Red Cross Society of China proved quite a talent for suspense, drama, and heightened tension. At 9:00 am we were picked up from the Red Cross Hotel and chauffeured to the location of the ceremony. Our arrival there was our first big surprise. Although we were told there would be a formal ceremony followed by a sumptuous banquet, we did not expect the size and splendor of the location of the ceremony to rival the Great Hall of the People. Nor did we expect the media coverage to match the paparazzi of Brittany Spears. We were held in a sizable room (the green room) next to a gargantuan meeting hall. The Red Cross people were adamant that we not accidentally meet Kailee’s donor prior to the official meeting and were very careful to time our pick up from the hotel and arrival at the ceremonial hall to prevent just such a thing from happening. Kailee’s donor was already in the hall. In the green room, we were honored to meet several Chinese dignitaries as well as Dr. Dao Pe, the transplant physician who harvested the donor’s cells, and several provincial leaders of CMDP and Red Cross from across China. Kailee was quite brave and amazingly interactive. It was a wonderful opportunity to put to good use all that she learned in her special etiquette and manners class in Girl Scouts. After a hesitant but brief start, Kailee shook hands, looked each person in the eye, and said some variation of “Hello, how are you” or “I’m well, thank-you, and you?” in Mandarin Chinese. The drama came with a musical prelude that rocked the walls and nearly knocked us off our feet. I was too awe-struck to ask at the time about the specific piece, but Owen and I later agreed it was something like a Chinese version of Beethoven’s………..ah, something or another. The people waiting in the green room gradually left the room, climbed the stage, and gave speeches recognizing and celebrating CMDP’s registry growth to 700,000 potential donors and accomplishment of participating in 800 international transplants. A video presentation of Kailee photos and past media materials celebrated Kailee’s success, after which she, and we, were led to the stage. Always thinking of Kailee’s comfort, and to “ease her mind,” our Red Cross friends arranged for a group of perhaps 20 or so young, uniformed, school girls to escort Kailee to the stage and then perform a children’s song. The MC asked Kailee to speak, and Kailee gave a few lovely words in a mix of Mandarin Chinese and English. Then, Kailee was asked if she had ever met her donor to which she responded “no.” “Would you like to meet your donor?” the MC asked. When Kailee said “yes,” she was asked if she could pick him out of the audience. To everyone’s astonishment, she did so, and he joined us on stage. The people gathered roared and camera flashes blazed. Kailee smiled brightly, happy to meet Wang Lin, and happy “the speech part” was over; Owen and Wang Lin shed tears of joy, many tears of joy; everyone hugged, and I was speechless, same as when Dr. Margolis told me we had a perfectly matched donor for Kailee. I could not help (either time) but be amazed (stunned, really) by the miracle of the whole thing. Now, this man stood before me, and I swear I could visualize the “hum” of his DNA circulating within him, and within my child. I was at peace. As you can imagine, our time together was too short. We were together during the banquet, sharing our lives, our thoughts about our miraculous connection, and our hopes that others will hear of our story and know, really know, that anything is possible. Peace, Linda PS If you know of anyone, anywhere who could benefit from knowing that anything is possible, unless or until you quit, please share Kailee’s story.
November 26, 2007 Dear All- Over this past Thanksgiving weekend, the three of us have been thinking and talking with each other about our family, friends, life, and all that we have to be thankful for. When we think about it all, truly contemplate our good fortune, we feel (not just know) the magnitude of our blessings. Four years ago on Thanksgiving, I was writing to you from my hotel in Hong Kong. At that time, we were searching for a marrow donor for Kailee. Then, with 8 million or so donors in the worldwide registry, not one a match for our sweet child, the prospects of one person with DNA matching Kailee walking into a donor center anywhere in the world seemed infinitesimally small. But here we are, November 2007…that one person did walk in to a doonor center…Kailee had her successful transplant, without complicatioons, and is doing well. She is in school, which I know I have said before, but for Kailee who has missed at least half of every school year since Kindergarten, this is special. And perhaps just as significant, if not truly amazing, after half years of each prior grade, Kailee's first 5th grade report card achieved the status of "Academic Excellence." Just imagine what she can do with regular attendance! And for some really huge news…I received an update from my friends at the China Marrow Donor Program. When I first went there to seek help for Kailee, although the marrow program was a fledgling undertaking with just 20,000 registered potential donors, the Chinese Red Cross Society opened their hearts to our plea. Once the word got out to the Chinese people, within weeks, the number of potential donors increased to 50,000. Since then, the CMDP has signed cooperation agreements with our American National Marrow Donor Program as well as with several of the world's other marrow banks and …… On December 20th, CMDP is holding a celebration ceremony for their 700,000 registered potential donors as well as for the 800 who have become actual donors, one for Kailee, 799 for other people around the world who were heading down the same potentially fatal path. For the celebration, Kailee has been extended a personal invitation to attend the ceremony, and per the invitation "we hope she could give us a show on the spot, perhaps sing a song". Now for those of you who know Kailee, the thought of this might give you a chuckle. Owen and I had quite a time imagining it. Kailee said (with great emphasis) "Ooooooooh, No. I'm not doing any show!" But when I explained a few short prepared remarks is what would be expected, she let out a big sigh and was ok with the idea. Anyway, all of this great news from China arriving on the evening of Thanksgiving, right at the end of our full day of reflection and giving thanks, needless to say we were soaring. It was so heartwarming to learn of their great success, particularly to me, knowing how much my husband dedicates nearly every minute of his free time helping other families going through what we went through trying to locate a marrow donor. I am awed by Owen's endless ability to keep in contact with the many families around the world who contact us (him) about how we went about our search for a donor. We continue to hear the stories of others, the ups and downs families go through when they do not have a match for their loved one. Owen means it when he says that for him, helping to increase the registry in any small way he can, as well as giving whatever he can to other families will remain his mission till the end. Soon after the news and invitation, however, we came back down to earth and did some checking into what it would take for the three of us to go to China with a little over 3 week notice. Although China has generously offered to provide for Kailee's travel, we quickly realized we are unlikely to make it all happen on such short notice. But for certain, we will let all of the attendees know we are with them in heart and soul. Finally, if I didn't mention before, Kailee's website guestbook was down, unbeknownst to us, since April. But it is up and working now and we would love to hear from you. If you have the time, read the last entry from our friend in England, Helen Li. Though we have never met, we think of her as a special angel, always with us through love and spirit. All my best to Each of You - Linda
October 30, 2007 Dear Family and Friends, I miss each one of you so, so much. I think we are a little lonelier up here in Port Washington. Our houses are further apart, but we are up on a hill and it seems as though we can see forever, especially with the leaves disappearing. Our lives continue to be full with things wonderful and things traumatic…but really, doesn’t that describe life for most of us? What I am about to tell you is truth. It is one little snippet of our lives since our last update. But if you have a queasy stomach, just scroll down to the arrow (-->), and go straight to the happy news. Kailee’s counts remain low, but stable. So, on the one hand, while she is still anemic, which for her translates as tired, nauseous and dizzy much of the time, and has low platelets hanging around 30, rather than the normal of 150–450 (thousands), on the other hand, her counts are not dropping further. Except for a recent crisis, last month, Kailee is transfusion independent, and that is worth a lot. In September, Kailee caught some type of bug. Owen was working in Albuquerque. On Friday night, of course after clinic hours, Kailee’s temperature kept going up, a scary thing in a post-transplant child. By Saturday morning, her temp was 103’. As has remained the case throughout our experience with Children’s Hospital of Wisconsin, I was able to talk directly with her off-duty transplant physician, Dr. David Margolis. Dr. M. instructed me to take Kailee to CHW emergency department for evaluation. Of course, I knew that’s what I should do, but hearing directly from him, knowing he was around, enabled me to turn her care over to ER doctors I didn’t know. Anyway, Kailee was admitted to the emergency dept. where an IV was started, and she had a slew of blood tests and a chest x-ray. She was then admitted directly to the HOT unit. There she received 48 hours of IV antibiotics and great care by the staff (as always) and by the attending transplant physician. On the first night, Kailee’s IV had to be restarted, and the emergency helicopter team came to do it. Boy, were they great, technically as well as in bedside manner. You just know these people are trained to the max. Although Kailee was discharged on Monday, she remained sick. The fever of 102’ – 103’ continued, and she felt just terrible, but by the next weekend, her problems took a different course. Early Sunday morning, Kailee came to our bedroom with the dreaded NOSEBLEED. Owen and I looked at each other and couldn’t believe how bad it was, how much like January 2002 this was. Days of fever with no one able to figure out was wrong, followed by the bleeding. But for the time of day (it was 11:20 pm then), everything was the same. I cry as I write this, cry for Kailee, cry for the memory of her little fear-stricken face, then barely 5 years old, and cry for her fear stricken face now, a wiser 10 year-old face perhaps, but still a little girl. I know it can be hard to understand how a nosebleed can be so bad, we’ve all had one, or seen one. I wouldn’t believe it had I not lived through this too many times now to count. But when your platelets are in the 20’s, sometimes the bleeding just can’t stop on its own. I think by the time Kailee woke up, she had already bled backwards into her stomach, because by the time she got to us, she was throwing up blood. Once again, that “deer in the headlights” look slid across her face, and she looked to us for reassurance that this would turn out alright, that she would be o’k. I’m so thankful Owen was home. I think together we were able to maintain control of ourselves, as well as of the situation. The bleeding continued while Owen and I got dressed. Kailee continued to gag and retch, trying to get blood clots the size of chestnuts up and out of her stomach. It took all my strength to not totally lose it when blood literally squirted out of her eye sockets as she tried to dislodge a clot from her throat. This we had not experienced. Although she had bled from her eyes, this squirting blood, far enough to reach my hands, this was new. This was horrifying. Kailee was so focused on the bleeding from her nose and her retching stomach, she didn’t realize blood was coming from her eyes until I dabbed at her with tissue. She looked up at me and just asked “why?” Owen and I reminded her that this was nothing we hadn’t been through before; that we were totally under control; that Dr. M was on duty and already at the hospital, ordering platelets for her as soon as we arrived at the emergency department. Her face softened and she said, “Yeah, I know the routine. I hate hospitals. Let’s go.” But the worst wasn’t over. When we arrived at the hospital, the staff was expecting her. They insisted on weighing her. Kailee was feeling weak and dizzy and had just been weighed in clinic on Friday. I told them she was too weak and was 31kgs. two days earlier. But they insisted…emergency physician policy, they said. So we got her up on the scale. Owen and I were at her sides while 2 or 3 nurses stood around the scale. Kailee said, “Momma, I don’t feel good” and she leaned into me. I thought she was just resting her head on my chest, but she started to slide down and dropped to the floor. I screamed and turned her face toward me. She was out. I kept screaming “She’s down, she’s down.” A part of me thought she was dying....right there at our feet. But one of the nurses said, “Dad, pick her up and carry her over here.” Owen carried her to a gurney, laid her down, and she came back to us. So, that was pretty much it. The platelet transfusion did stop the bleeding, IV fluids helped her heart rate and blood pressure, and we were sent home. Her fever continued throughout the next week, and because of the loss of blood and a hemoglobin drop to7something, she continued to feel terrible and needed a blood transfusion during the week. But slowly over that 2nd week, Kailee improved to where she is now…same low counts, but good enough I guess, and stable…thank God! --> By the way, Kailee is back to middle school and loving it, and she did go trick-or-treating with friends in Wauwautosa, an area near the hospital. She had a super time. We all did, actually. It was great to see Kailee choose a witch costume this year, especially after 7 years of princess costumes. And a girl scout weekend camping trip a couple of weeks back, with Mom the troop leader, added to her good times. And now for the wonderful news… a new baby girl joined our family. Our son, Ben and his wife, Erin, gave birth to our 6th grandchild, Macy, on October 11th. Now, we are blessed with six grandchildren, all who are six years and under, one whose birthday I forgot on the next day the 12th. A grandmother can take only so much excitement in a twenty-four hour period you know. And, boy do we miss seeing each one of them on a regular basis. It’s all the little things that little kids do, the day to day things that as a grandmother, I miss the most. Maybe some day soon, one of those supersaver airlines will start up a flight to Albuquerque from Milwaukee, because for now, it’s sure not easy to get there often enough. A final piece of good news, my parents, both of whom have been ill, especially my mother, whom we nearly lost in May, came to visit last week. We had such a nice, relaxed time together. Kailee had a chance to enjoy having grandparents around, and we all enjoyed the fall colors, a picnic under a beautiful, blazing yellow tree by an old covered bridge. We celebrated my mother’s 75th birthday on the 25th, the same day as Owen’s fifty-something birthday, and my dad and I enjoyed cooking together. Their visit wasn’t long enough. So that’s it for now my friends. I’m exhausted just writing this, yet living it, and besides, a chicken pot pie is in the oven. Love to all - Linda
August 1, 2007 Dear All I have been thinking we are way overdue for an update, but our recent move from Shorewood to Port Washington and into our new home has sapped our energy. I had forgotten just how much work is involved in moving an entire household. With so many recent inquiries into Kailee’s status, I realize an update is priority. Kailee’s counts are low, with, as of yesterday’s blood work, a new and surprising drop in all cell lines. A while back, Dr. Margolis, Owen and I, agreed to stop all Kailee’s medications, immune suppression and all the prophylactive drugs that go with immune suppression. We wondered whether those medications were keeping her new marrow from producing cells at their full potential. It seemed as though the slow tapering of the drugs was having no effect on her counts. At that time, Kailee’s marrow was 85% donor cells and 15% Kailee cells. After we stopped everything, her marrow improved, with 90% donor and 10% Kailee…but now, things are heading in the wrong direction. We are waiting for test results that will tell us whether the 90% / 10% balance has shifted, whether we need to restart the immune suppression. I can tell that yesterday’s lab results had a profound effect on Kailee. Since we returned home from the hospital, Kailee has not spoken one word about the blood tests; rather she has withdrawn into herself, reading & writing, wanting to be alone. We know she processes information in this way, but it is really difficult not knowing whether to try to engage her or to let her be. Also, she just does not feel good. Her low blood counts could be causing her to feel poorly, but it could also be the unexpected results serve as another emotional blow. Kailee was able to attend summer school as a fifth grader at Thomas Jefferson Middle School in Port Washington. She has been very happy to go to school again, take fun classes as well as academics, and get to meet some of the new kids. I remain so pleased and proud that Owen worked with NMDP again this year on the 5th Annual Thanks Mom Bone Marrow Donor Drive. This May, Thanks Mom conducted drives in 710 locations in 46 states bringing in 36,735 new donors, plus an additional 6,196 signing up on line at www.marrow.org , totaling 42,932 new donors with 7,789 new minorities! I am thrilled that NMDP has come so far since Owen and our family organized the first Mother’s Day Drive in four locations bringing in 200 new donors. In the last couple of months, a remarkable, motivated, 12 year old boy with leukemia, Pat Pedraja, has organized www.DrivingforDonors.com with a goal of raising 5000 new donors! He has succeeded in raising awareness and bringing the Duchess of York, Sarah Ferguson, and other celebrities on board this critical mission. Owen has always felt the need to enlist the help of various celebrities, business, sports, entertainment, etc. to help raise awareness and grow the registry of potential marrow donors. Now, thanks to Pat Pedraja and his Mom, Claudine, our cause is gaining celebrity support. Perhaps with Sarah Ferguson’s help, we can include all the United Kingdom in our next spring drive. Our friends at the China Marrow Donor program have once again invited us to bring Kailee to China. We hope to, if funds and health allow, take Kailee next spring to visit her donor, as well as the many Chinese people who helped make her transplant a reality. Wouldn’t it be great to organize a donor drive in China and in the UK to coincide with the Thanks Mom drive here in the US? For now, thanks for listening, thanks for being there, and thanks for caring. Love, Linda
April 26, 2007 Dear Family and Friends – Many important things are happening and I want you to share them with you. First, Kailee’s blood work last week showed her red blood Hemoglobin and Hematocrit finally hit the NORMAL range. To the best of my recollection, this is the first time she has achieved normal without the aid of blood transfusions since this disease hit her more than five years ago! On top of that, Kailee’s White Blood Cells are so close to normal another week of heading in the right direction, and they’ll be there too! Her Platelets (the stubborn little %@#*&!) are staying fairly steady at 70 or so, only half of low normal. But then platelets are usually the last cells to recover, and importantly, she IS transfusion independent. Dr. Margolis has started to wean her off the immune suppressing drug she has been on for the last 5+ years, and that will take about 4 months if all goes well, and who knows, sometimes the counts bounce up a little when that drug is stopped. We were extremely worried a cold she caught during the Easter season was going to destroy her marrow, again, as did the virus last February that likely caused the failure of her second BMT. But so far it looks like she may have dodged that bullet. Until the most recent Lab work, Kailee’s counts jumped around each week, and each downward move drove us (ME!) crazy. So although we still have a bottle of champagne in the fridge waiting for the day all of her counts are normal, as Dr. Margolis taught us long ago, “cautious optimism” remains my (maybe “our”…but Owen is always more optimistic than I am) motto. The second BIG thing I thought you’d want to know about is that again this year, Owen is working with the National Marrow Donor Program on the 5th Annual Thanks Mom Bone Marrow Donor Drive. You may remember when this first started 6 Mother’s Days ago; it was an idea that came to me in the middle of a sleepless night while we were staying at “Kathy’s House” here in Milwaukee. The National Marrow Donor Program had never done a national drive and the little help our family could offer at that desperate time in our lives produced about five locations around the country, one focus family that I recall, us, and added a couple hundred people to the registry. Since then, Owen has run with it and continues to work with NMDP each year. Amazingly, this year there are:
This is so exciting, and I am so proud of Owen for being able to continue his resolve and hard work to save other families from what we went through, in addition to his looooong hours as the sole provider for our family. So PLEASE pass the word! This year’s drive starts May 7, 2007 and runs for two weeks. All ethnic minorities are especially needed, and now a little swab to the inside of your mouth is all that is required to join. But please remember you need the commitment to donate if you are fortunate enough to match a person in need. Just imagine the blessing of knowing You could Give the Gift of Life to another Mother’s Child! For the NMDP Registry location nearest you, go to www.marrow.org. Love & Blessings Linda
Kailee's Second Bone Marrow Transplant - 11/7/2005 - Photos
Kailee’s Bone Marrow Transplant Boost was completed on Saturday, February 3, 2007 at Children’s Hospital of Wisconsin as planned. We are now at home, snuggled in as a family with lots of warm blankets to protect against viruses and Old Man Winter with wind chill temperatures that have dropped down to 40 degrees below zero. Sincerely, Owen Wells Daddy of Kailee
January 16, 2007 Dear Ones- It has been a long time since I have written, but the significance of this week demands that I do so....a catharsis perhaps, maybe just a blog. Thoughts flood my brain. Emotions overwhelm my heart. The days of plans and dreams for a future are hard to come by now. The days of unsuspecting hopes and naive plans are a thing of the past. Five years ago today, the life we knew, the life we had, stopped. We didn't plan for it. We didn't prepare for it. Never saw it coming. Never could have dreamed it up. But it all came to a screeching halt just the same. 5 years....60 months....1,825 days....43,400 hours....2,628,000 minutes ago, our sweet, precious, china doll nearly bled to death in the night. But she didn't. And I wouldn't give up one of those minutes if it meant losing Kailee. Sometimes, I think it might not have been so bad, still so wrenching, the memories so vivid, had it not been so sudden. The doctors had said, "She has a fever." "It's just a virus." "Kids have nose bleeds." "Don't worry, kindergarten is making her tired." Then, the blood, lots and lots of it, and the searing ache and struggle of not knowing what to do. And the words, "She's lost half of her blood." She had just turned 5 then. Just turned 10 this month. In some ways it was easier in the beginning. We couldn't have imagined then all that has happened since. We didn't know then, couldn't comprehend what having a deathly ill child truly meant, didn't know what it felt like, couldn't imagine how watching your child tip-toe around the edges of life and death, day after day, imprisons your joy. Simple joys like thinking you know what your family is doing this weekend...heck, tomorrow even, or listening to your child tell you about her day at school, buying tickets for a special event next month, or planning spring vacation, let alone summer vacation. In some ways it was easier in the beginning, because after the bad news, the really, really bad news, came options, possibilities, hopes. This drug or that...immune suppression...horse serum...rabbit serum... Zenapax...high dose Cytoxin, androgens, white cell boosters, red cell boosters... just to name a couple off the top of my head. This protocol or that. Transplant or no transplant. Cord blood transplant, bone marrow transplant, peripheral blood stem cell transplant. Manipulated cells, unmanipulated cells. Preconditioning with chemotherapy and radiation, no preconditioning. This transplant center or that. Seattle, Minneapolis, Milwaukee, Bethesda, Boston, Memphis, Houston. But now it's different. The best transplant center for Kailee was chosen. The best doctor for Kailee was chosen. The drugs have been given. The protocols administered. The choices made. Two and a half million minutes later, two transplants and a transplant boost later, where are we? Staring down the throat of a black abyss, trying to focus on our one last shot. The last chance of making Kailee well. February 3rd, Kailee will receive another, her last, infusion of stem cells from her perfectly matched donor. Her dearest, dearest friend in the world, her donor, agreed to give his stem cells to her once again. Thank you dear, dear friend. Thank you for one more chance. For us, the end of the road is near. It's either gonna be a go or a no go. Period. Love - Linda
December 6, 2006 It is hard to believe the end of the year is so close! This Thanksgiving, Linda, Kailee and I enjoyed a small quiet holiday, recalling our last Thanksgiving in the HOT Unit at Children's Hospital, following Kailee's second bone marrow transplant. Throughout the day, we talked about all that we have to be thankful for: first, each of you that remain with us on what continues to be an unending journey; second, Kailee's donors and everyone who helped find the perfect match and everyone who helped make the transplants happen; and third, Linda's good health despite a stroke, several TIAs, surgery on her carotid artery, and a very scary brush with breast cancer, finally resolved after months of mammograms, ultrasound, biopsy, and lumpectomy. While Kailee's second transplant seemed to take well (she has about 95% her donor's marrow), throughout the summer and fall, her counts have steadily dropped. She is back to needing regular transfusions of platelets and red blood cells. After diligent investigation by Dr. Margolis, the best guess of what is happening to her now is the result of a virus that attacked her marrow some time last spring. About a month ago, Kailee's doctor recommended another transplant boost, this time with fresh stem cells from her donor in China. Dr. Margolis and his transplant team sent an official request to the China Marrow Donor Program. Since the request, we have once again been living on pins and needles, because we learned that China does not allow second donations from the same donor. The request required special scrutiny by the Chinese authorities. Dr. Margolis provided them with published research data that shows an excellent prognosis after transplant boosts with fresh stem cells in patient's in Kailee's situation. On a day of particular angst, today we learned that our request has been approved, and the donor has agreed to a second collection. Now, all we need is the date. We understand it will be soon, but a special courier from Children's hospital will need time to get a Chinese visa and make travel arrangements. As last time, a courier will fly to Beijing to be on hand when the donor's stem cells are collected, and return immediately to CHW. This boost is the same as a transplant, except that because it is stem cells that are a DNA match to nearly all of Kailee's new marrow (95%), Kailee will not need chemotherapy, radiation and another full month in the Hot Unit. Instead, she will need time for her marrow to grow, her immune system to strengthen, and diligent protection from viruses. Considering what happened last spring, we are going to do everything we can think of to protect her. Of course, we have to share the world with viruses, and there are some that can get to her no matter what we do, but we are going to give it our all. Thank you for caring. We will try to do better with posting updates. Owen September 2, 2006 On Wednesday night, August 30, Kailee received another cell infusion from her Chinese donor. Kailee’s second bone marrow transplant on November 7, 2005, from her same donor, seemed to be a success. Her counts reached the normal range for a short time before gradually declining over the last five months until she started requiring transfusions of red blood and platelets again. Fortunately, because Kailee is mostly her donor’s DNA now, no chemotherapy or radiation was necessary this time. Because her immune system was not intentionally destroyed to allow the new donor’s cells to take over, as in transplants, this stem cell infusion, or stem cell boost as it’s called, does not require another month in Children’s Hospital and many months to rebuild. Instead she received her stem cell boost as an outpatient, and we were able to return home the same night. Fortunately, we had the option of our donor’s cells. Now, we start the stressful, waiting and watching again, hoping in three or four weeks Kailee’s counts will start to climb once more. Sincerely, Owen Wells Daddy of Kailee August 6th 2006 Much has happened since our last update. Our journey keeps going on and on and on. Linda was diagnosed with Vascular Disease, had a stroke, went in for surgery to remove a 95% blockage in her left interior carotid artery to her brain, had to be readmitted to the hospital for a TIA, and now is being treated for high blood pressure, vascular disease and heart failure. Finally, with two hospital stays and medication changes, we have her blood pressure in the normal range. Next week, more tests with her cardiologist. These last four plus years have been so very hard for Linda. Kailee has had her counts gradually decreasing over the last four months. Last week, she had to have more transfusions of platelets and not long before a transfusion of red blood cells. We have subjected Kailee to many tests, including her 16th bone marrow biopsy. Dr. Margolis has determined that Kailee has late graft failure. We have ruled out Aplastic Anemia, Leukemia, MDS, and rejection. Our current plan is to give Kailee another couple of months so her damaged marrow can hopefully start to grow more cells on its own. We do not know what caused her marrow to be damaged, perhaps a virus since her second BMT. If her marrow does not grow cells very soon, then Kailee will receive another infusion of her donor's stem cells. We are so very fortunate to have that choice! No Chemotherapy or radiation this time, but an increased danger of Graft vs. Host. Hopefully, then her marrow will recover and start to build new cells once again. Sincerely, Owen Wells Daddy of Kailee Husband of Linda May 11 Six months post BMT and mostly doing well. It has been a difficult week with Kailee needing to go to Children's Hospital three times. Part of what is necessary to keep the bumps in the road following her transplants from becoming larger as her immune system gradually rebuilds and her transplant chemicals are purged from her body. We are continuing our efforts to assist the Thanks Mom Donor Drive, now taking place in over 150 locations, in 110 cities in 36 states, plus British Columbia and Puerto Rico mostly on May 13. Tomorrow AM our family will be on the CNN Morning Show promoting the drive. It is NMDP's single largest effort to date! There will be no costs to anyone, just a Q Tip to the insides of your cheek. This Mother's Day, Please Give the Gift of Life to another mother's child! For the locations nearest you, go to www.marrow.org and the Thanks Mom Donor Drive has the information. Thank You for caring about Kailee and others like her. Sincerely, Owen Wells May 2nd Dear Friends & Family - Just a quick update to let you know that after a shaky start to the week, Kailee had electrolyte problems with a dangerous potassium level, we are off tomorrow morning to New York. You will be able to see Kailee and more of her story Thursday morning at approximately 7:30 am on CBS Early Morning. It is our greatest hope that together with CBS and the article coming out in Friday's issue of People Magazine, we really can help make this year's Thanks Mom Marrow Donor Drive a huge success. Finding just one good match for someone in need right now will be well worth the effort everyone has put into this. Warmly, Owen & Linda
Day + 166 April 22, 2006 Dear Family & Friends, REALLY BIG NEWS TO SHARE! Guess what Kailee will be doing Monday morning? As will millions of other kids, she will be going to school! Nearly six months to the day she left school for bone marrow transplant number two, Kailee will be rejoining Ms. Sakai's classroom at Atwater Elementary School. Talk of her return to school, seeing her friends, being a "normal kid" has dominated family conversation for months. Now that the day is almost here, she is so excited she keeps asking us, "When is it going to be Monday? How many days until I can go to school?" She just can't wait! After 4 + years, 52 months of living with constant dread and fear, struggling to keep hope alive for ourselves and for our child, we are beginning to appreciate, though cautiously, Kailee has a good chance of living the full life we all want for our children. Although we remain alert for signs in the community of mumps, chicken pox, and other infectious diseases dangerous to Kailee, over the past few weeks, we have let her gradually reenter normal life and play with other children. SHE IS LOVING IT! During the school's Spring Break, the kids have been outside playing…school. To see such happiness in Kailee's eyes, watching her participate in a simple neighborhood Lemonade Stand, recovery is slowly starting to sink in for Linda and me. In spite of our happiness, over the last month or so, Kailee has experienced quite a bit of bone and joint pain in her legs and feet as well as pain in her stomach. With additional testing and careful evaluation by Dr. Margolis and the great medical team at Children's Hospital of Wisconsin, it seems that all of this is some graft vs. host disease. Dr. Margolis added some new medications and adjusted the dosage of others she takes, and it has helped a lot. However, because of the toxicity of her drug regimen, it is critical that Kailee drink 70 oz. of water each day to wash the drugs through her kidneys to avoid permanent damage. As we all know by now, Kailee's chance of finding a marrow match in her unique set of circumstances was one in many, many million. But it happened, and if it happened for her, it can happen for others! Just as Kailee's donors learned of the need and walked into a donor center to register their marrow type, we know many more will do the same if they just know about it. That's why we are sharing Kailee's success with others. We hope it will encourage people to join marrow registries world wide and save a great many lives. We are working hard with the National Marrow Donor Program to organize the single largest NMDP event ever. The 4th Annual Thanks Mom Donor Drive on May 13 will be held in at least 117 locations, with more signing on each week, across the United States and British Columbia. Our Message: All Mothers, whether 18 or 98 years old, want their children to live healthy lives. This Mother's Day, rather than flowers or perfume, let's honor all mothers by encouraging others to give the Gift of Life to another mother's child. Joining the registry is simple, just a simple Q Tip Swab inside your cheek and the time to fill in a form. In their continuing effort to educate and inspire, CBS Early Morning News in New York, as well as People Magazine will be here Monday to cover Kailee's return to school. CBS co-anchor Hannah Storm will update Kailee's unique journey of survival, from New York, on May 4th, and People Magazine plans a story in its May 5th issue. For more information, on becoming a committed donor: check out www.marrow.org www.bloodservices.ca, www.bcw.edu, www.KaileegetWells.com. Thank you for caring. Warmly, Owen & Linda
Day + 137 March 24 Kailee is now Day + 137 and doing fine. She had another dip in her counts. Hopefully, it is only because her body is fighting a cold virus. As parents, we will feel much better when her counts improve and the cold is gone. Last night, she and I had a pillow fight. Kailee is becoming more cunning or as a number of Chinese people told us originally, "Very clever girl". She managed to pose a sneak attack with pillows that caught me right in the face! I can see and feel her strength gradually returning. Experiencing her recovery is such an absolutely tremendous feeling!!! I wanted to share a very sweet letter from Kailee's Donor recently and our letter to him: Dear Kailee, Owen and Linda, I am so happy to know that with each day as you grow, you will have grown to be a beautiful child. With so many warm hearted doctors who were so concerned about your new improvements every hour and every minute, each new update on Kailee brought us immense joy. As unfortunate as it was that Kailee had to go through this experience, as parents, Owen and Linda, your love for your child has touched our country's people. It has influenced our warmhearted people to participate and register. Giving these patients hope for a second life is such a grand effort and meaningful work. I am a doctor myself and helping people, such as Kailee, is also my happiness. Perhaps our meeting was fate. I have confidence that Kailee will be 100% herself again because she is surrounded by an ocean of love and the world's love and kindness is on her side. Let's hope the world can save others like Kailee and give them hope. Lastly, when Kailee is completely healthy, I welcome her to visit our Country's heaven, Hangzhou!
Your friend, Dear Donor- The love for Kailee by Chinese people has been deeply felt by our family. The fact that you joined the registry, matched Kailee and became her donor is such a tremendous relief now that Kailee is doing well and has a good chance of a complete recovery!!! Giving other patients hope for a second life is also our happiness. We are so very happy that our sweet little Kailee is now becoming a success story and it is our desire that by sharing this wonderful news that others will realize that there is hope and many more good hearted people will join the registry and together we can save many more lives. On May 13, in the United States, there will be an NMDP Thanks Mom! Donor Drive in 80 locations, thus far! The concept is that all mothers, whether the mother is 18 or 98, all mothers want their children to live a healthy, happy life. We are asking families of mothers everywhere to ask their families, friends, coworkers, contacts, anyone, to Give the Gift of Life to another mother's child somewhere on God's earth by joining the registry. Perhaps this coming Mother's Day weekend, China could join the United States to do a Thanks Mom! Donor Drive as well? Someday, when Kailee is safe to travel to China, we hope to meet you and say Thank You So Very Much to You, the China Marrow Donor Program, the Red Cross Society of China and the Chinese people who have taken Kailee and our family into their hearts and saved her life!!! I trust you, your son and wife are well and are enjoying very much being new parents! Adopting Kailee was the best decision, Linda and I ever made! She continues to be a huge joy in our lives! Visiting China's Heaven, Hangzhou, sounds like a great experience that our family is going to fulfill! Sincerely, Owen Wells
Daddy of Kailee
Day + 122 March 9 Kailee is doing fine! She had her second and last Broviac I.V. central line removed on February 27. This surgery was easier and much less painful than her first central line extraction. She has had a dip in her counts, due to a cold and the surgery. Kailee needed to wear a backpack with I.V.s to help keep her kidneys and liver well hydrated from all the drugs, until Day + 100, when she was required to only wear it at night. Now, with her last Broviac, backpack gone, and the surgery healed, Kailee is a "FREE GIRL" in Kailee's words!!! If her T cell count is high enough soon, we are talking about Kailee being able to return to school! That will make her very happy. She just wants to be a normal kid. I have seen her attitude and energy increase. She was walking Tillie, our Yorkie dog, with me and Kailee was singing and skipping! I have not seen her that happy and positive in a very long time!!!
KAILEE WELLS, DAY + 100, Wednesday, February 15, 2006 MOTHER’S MARROW DRIVE, Nationwide, Saturday, May 13, 2006 February 15, 2006 at Children’s Hospital of Wisconsin, First Floor Family Resource Center at 11:30 AM to 1:00 PM, 9000 W. Wisconsin Ave., Milwaukee, WI 53201, Contact Sara Silver-Traband in Children’s Hospital, Public Relations to RSVP, for an escort and details (414) 266-5420 www.chw.org Dr. David Margolis, Owen and Linda Wells will be available for interviews. For four long years, the Wells family has been asking “CAN YOU SAVE KAILEE?” Good people everywhere responded and turned a family’s plea for help into a global effort that has helped add 300,000 to the world’s marrow registry and given a chance at the Gift of Life for 300 people, thus far, that we know of!!! In September, the Wells confirmed in Beijing, China, that Kailee’s donor, Dr. Wang Lin, was indeed a marrow match for Kailee!!! Kailee had her second bone marrow transplant (BMT) on November 7, 2005, under the direction and watchful eye of Dr. David Margolis and his excellent transplant team at Children’s Hospital of Wisconsin, in Milwaukee. On February 7, for the first time in four years, all of Kailee’s blood test were normal! The Wells hope that Kailee’s success story will strongly encourage others to join the National Marrow Donor Program (NMDP) and save many more lives. Their family, along with NMDP and the National Association of Hospitality Houses, have organized the fourth annual MOTHER’S MARROW DRIVE to take place this year on SATURDAY, MAY 13, 2006 in 75 LOCATIONS NATIONWIDE, and the number is growing. The best way to say thank you for the gift of life may be to give that gift to someone else. That’s why the Mother’s Marrow Donor Drive Recruitment Campaign asks you to honor your mother by registering your marrow type through a simple blood test. “Everyone has a mother, and every mother, whether she is 18 or 98, wants a healthy, happy life for her child. What could be more meaningful to your mother this Mother’s Day than honoring her with the gift of life for another mother’s child?” "At 100 days post transplant, Kailee is doing as well as we had hoped," said David Margolis, MD. "She is engrafted, meaning her donor's cells are making red cells, white blood cells and platelets. Kailee does not need transfusions, and has not had any significant infections. Her immune system still is building, so she remains at higher risk for infection than most children. Kailee's health care team wishes to thank the Chinese Marrow Donor Program and the donor, who have helped Kailee reach this important milestone." Dr. Margolis is Kailee's Doctor and the Program Director of the Blood and Marrow Transplant Program at Children's Hospital in Milwaukee, WI. He can be reached at (414) 456-4170. Owen and Linda Wells are grateful for the support of the many people who helped them raise worldwide awareness for bone marrow donation. These efforts resulted in a donor for Kailee. The Wells plan to continue to raise awareness as a way of saying "Thank You." "We are grateful for the incredible teams at Children's Hospital and the Blood Center of Wisconsin, for the care they have provided Kailee," said Owen Wells. "It is our family's hope that Kailee's success story will strongly encourage others to join the National Marrow Donor Program (NMDP) to save many more lives." Children's Hospital Press Release Honor Your Mother By Giving the Gift of Life Mother and Daughter Hike for Awareness “We are on a journey to find a cure, a reason, and a better outlook for bone marrow diseases. Our goal is to raise $1,000,000 for the Aplastic Anemia & MDS International Foundation (AA&MDSIF) to fight bone marrow diseases and fund patient support. My mom and I want to give back to the AA&MDSIF, because it helped us cope and survive the emotional, mental and physical challenges of my disease, as it does for many others. To spread awareness, promote interest, and raise money to fight bone marrow diseases, we are hiking 5,000+ miles. Each step for me and my mom will be a reminder of how far we have come and a celebration of my overcoming aplastic anemia. If you don't know the details, here they are: I have decided to hike across the country to raise awareness and research funds for Bone Marrow Disease. Being diagnosed with Aplastic Anemia in 1997, and then being told 7 years later that I am in complete remission changed my life. I decided to do something big -- and I feel very fortunate that I realized this at a young age. So I'm taking advantage of it -- and I'm going to do something big. The hike is going to take the American Discovery Trail across America. It's more than 5,000 miles long. And my mom is going to hike by my side the whole way. My dad, Keith, and my hubby, Adam, will be staying back to work while we're trekking the country. How great of these guys to stay back and pay the bills while we do this!! They are such an amazing support team and such a huge part of this! We certainly couldn't do it without them!! Read more: Our Hike Day + 88 February 3 Last week, Kailee suffered a sudden onset of intense pain in her right chest above her central line. The line had to be removed, and she had to go back to the operating room for her 15th or so procedure under general anesthesia. As she awoke in recovery, her pain intensified throughout the day and night culminating in sobbing and screaming. The pain medicines seemed to have no effect, and had there been beds available at the hospital, she would have been re-admitted for pain control. But we necessarily dealt with it at home and her pain eased a tiny bit on Friday and a tiny bit more on Saturday and more each day since then. We still do not know what caused it all, but do we ever dread dealing with the remaining central line when the time comes to remove it. It was a long, hard week and sleep was a challenge for all, including, I'm sure, our very patient neighbors. This week, Kailee's platelets dropped from 225 to 165, still within the normal range of 150 to 450, but scary to us none the less. All other counts stayed roughly the same. This week, our daughter is almost herself again. One morning, Mommy looked out the bedroom window and saw where Kailee had written in the snow "I love Mommy." That started her day off with a big smile. Kailee is now back to working with her home bound teacher each day and we all pray she will be able to return to third grade after Spring break. She is determined to advance to Fourth Grade with her class! Recently, I heard from yet another Aplastic Anemia patient asking for information and help with decisions. I learned this patient is four months post ATG, still having abnormally low counts, without a donor search being started! Our family and many transplant doctors agree that a MARROW DONOR SEARCH MUST BE STARTED AT DIAGNOSIS of many blood disorders, including Aplastic Anemia. The rationale for waiting include costs, effort, and the hope it may not be necessary. Sometimes, ATG does provide a long term solution for Aplastic Anemia. Very often, it does not. Some patients are unable to survive long enough to have a transplant so time is of the essence. Especially for ethnic minorities, finding a match can be extremely difficult and may require many months, as in Kailee's case, almost four years, there is NO EXCUSE FOR WAITING. START DONOR SEARCHES ON DIAGNOSIS!!! Once a patient's family knows if there is marrow match, then donor drives can be organized and decisions made. There is NO BETTER COMPREHENSION OF RELIEF, JOY, HAPPINESS, SENSE OF HOPE, THAN KNOWING YOUR CHILD HAS A MARROW MATCH AND A CHANCE TO LIVE!!! How dare families be kept in the absolute fear of losing their loved one without the right to know and start searches immediately after diagnosis! For Aplastic Anemia patients, know that the Aplastic Anemia & Myelodysplastic Syndrome International Foundation, headquartered in Annapolis, MD, (800) 747-2820, can provide a wealth of information on hospitals capable of bone marrow transplants and hospitals with experience in Aplastic Anemia as well as a large number of other diseases. Always do in depth homework and obtain second opinions. Become a strong advocate for your family member's health. Learn and observe as much as you can. No one cares like a family member! Even the best hospitals make an occasional mistake. Your loved ones' life may depend on it!
Little Charlie Receives Bone Marrow Transplant! January 27, 2005 Due to your prayers and support, today doctors at the Children s Hospital of Wisconsin performed a bone marrow transplant on little Charlie Martinez. Little Charlie is 5 years old and has been suffering from High-Risk Acute Lymphoblastic Leukemia for over two years. It is an extremely painful form of leukemia and inhibits Charlie s ability to generate red blood cells which deliver oxygen throughout the body, infection fighting white blood cells or platelets which are needed to stop the body from bleeding. His parents Tomas and Aurelia, who are undocumented, put themselves at risk in their public search for a matching bone marrow donor for their only child. Doctors had stated Charlie s best hope was to find a bone marrow donor and receive a transplant by the end of January 2006. While some put the odds of finding a matching donor at 1 per 1 million candidates, groups including the League of United Latin American Citizens (www.LULAC.org), La Familia Latina Unida (www.somosunpueblo.com), Milwaukee Ser Jobs for Progress and Fiesta Mexicana worked with Charlie s parents to organize bone marrow screening drives. The National Marrow Donor Program (www.marrow.org) reported the find and proceeded to test the donor to re-verify the match. In addition, an in depth exam of the donor was conducted to insure the donor was healthy and posed no additional risks to Charlie. Due to the non-disclosure agreement that exists between the National Marrow Donor Program and all donors, we do not know who the donor is or where the donor is from. Doctors state that even if the transplant goes well, it will still take months of treatment and rehabilitation before Charlie will be able to live in a non-sterile environment as the bone marrow begins to settle in Charlie s bones and then start the process of regeneration. We ask everyone to pray for Charlie, his parents, and Charlie s miracle donor. More information to come& Thank you and God bless! For more information visit:
Day + 71 January 17, 2006 As we observe the four year anniversary of Kailee's diagnosis we have good news. Today, at Children's Hospital of Wisconsin, Kailee's Platelets are normal at 202, Hemoglobin or Red Blood Cells are almost normal at 10.4. White Blood Cells are normal at 4.7. Neutrophils are at 3200. Tonight, Kailee and I baked cookies and played cards together. I have not seen my little girl so happy and full of giggles in such a very long time! Kailee's Chinese name, Chang Ban, means "Never to be alone". China, in her wisdom, was right! Thank you, Lord, and for all the people who are helping to give us our sweet Kailee back!
A little 9 month old Asian boy Ashish Thomas is in need of bone marrow. The drive is on Sunday January 15, 2006 at Chicago Marthoma Church at 240 Potter Rd, DesPlaines, Il 60016 from 11 - 3pm.
Day + 51 December 28 Kailee, Linda and I enjoyed a nice quiet Christmas together in Milwaukee. Kailee helped Mommy prepare a delicious meal, our traditional Christmas ham with cheesy potatoes and string beans. Someday, all too soon, Kailee will be a grown woman with skills, intellect, compassion and so many good attributes that her Mommy and this time in her life have taught her. Kailee's conversation is gradually changing to "When I get better" instead of "If I get better". We are all slowly beginning to dare to believe it is coming true! Platelets were 82 on December 19, then 80 on December 22. GREAT NEWS: Platelets have risen to 137 on December 27 and Dr. Margolis continues to be pleased with Kailee's slow, gradual progress with no recent signs of GVH or rejection!!! Kailee's blood type is now the donor's B, rather than her original O. We celebrated by taking Kailee to a Mexican Restaurant of her choice during off hours so her risk of exposure to other people's germs was reduced. We are now half way to attaining our next medical milestone of 100 days post BMT. Kailee still has a long way to go to feel safe however it appears that the backside of the BMT hurricane has subsided. Now, if we can just keep GVH and infections at bay for two years until her new immune system has completely regrown. With 2005 drawing to a close, we are thinking we have much to be thankful for and are looking forward to 2006 to be a healthy, happy year for Kailee and our family. As Kailee appears to be on the road to recovery we hope to stay involved with helping other families. Sincerely,
Owen Wells,
Day + 44 Kailee is doing as reasonably well as expected in her long road to recover. She has been able to stay home except for checkups at the Children’s Hospital 8E Clinic, now only twice a week. She still has pain regularly and wears a heavy black backpack with her I.V. medications that pump 24/7. Kailee had to have another red blood transfusion on Thursday, 12/15. Her platelets are slowly beginning to rise, 71 on Thursday, now to 80 on Monday. Normal is 150 +. This is the highest Kailee’s platelets have ever been on their own since her diagnosis in January 2002! Kailee is going to be at risk for infections and will be immune suppressed for as long as two years post BMT. We are staying home in Milwaukee and looking forward to a nice quiet family Christmas. Kailee and Mommy were listening to Christmas music and Kailee felt good enough to dance with Mommy for a few minutes! Our older daughter, Taunya is coming to visit and Kailee is very excited that “Nani” will soon be here. You came through for Kailee and numerous others who have found their matches! Now, there is another patient in Children’s Hospital that desperately needs to find a donor match. www.saveCharlie.org for more information. Please encourage as many Hispanic people to become donors as you can. Anyone who has contacts, friends, organizations, movers and shakers in American cities with large Hispanic populations or in Mexico please share them with Julie Santos at juliesantos000@yahoo.com and iwillhelp@saveCharlie.org right away. We have started working with the Icla da Silva Foundation in New York www.icla.org and hope we can find other good similar organizations on the west coast and in Mexico to work with. Charlie Martinez, 5, has high risk acute lymphoblast leukemia (ALL) and needs to find his match in January to be strong enough for his BMT if he is to live. Day + 31 December 8 The back side of Kailee's BMT hurricane hit and first gave us high fevers. Our doctors were concerned of possible fugal or other infections and several CAT Scans came up negative. One night, Linda discovered a GVH skin rash that fortunately went away with steroid crFmes. On Friday, December 2, Kailee's counts dropped and we feared rejection was again going to defeat our second BMT!!! GCSF and steroids were again added over the weekend to try to help turn the battle our way. Chemorism tests to determine the percentage of Donor cells to Kailee's cells have came up 95% Donor, then 75% Donor, then 95% Donor. The battle is raging between Kailee's T cells and the Donor's T cells. If the Donor's cells win we have engraftment. If Kailee's cells win we have rejection. Now, we can only hope and pray that the Donor wins!!! Kailee tried on her new wig last night. She looks great, but it itches her scalp which is clearly visible through the little hair she has left. The GOOD NEWS: Dr. Margolis has decided that Kailee is doing well enough to go home in Milwaukee!!! The final outcome of this first major battle will not be known for perhaps another month but we will all be happier at home. After 40 days confined to a hospital room it will be nice to at least have the run of the house! Kailee will need to go to the 8E Clinic every other day for check ups, but going home will be good for all of our spirits.
November 28th Day +21 Dear Ones - Since our last update, things have been difficult, to say the least. Kailee has battled one fever after another. Each time her temperature reaches a certain point, the nurses draw blood cultures from each of Kailee's four lines. Recently, the doctors started Kailee on additional IV antibiotics ("the big guns") and also on an IV antifungal drug. Friday night, the doctors ordered CAT scans of Kailee's head, chest, and abdomen, trying to locate the source of her fever. Those were done Saturday. So far, nothing shows up...but apparently, some of the suspect bugs can hide for quite some time. It is also possible, we are told, that she does not have an infection, but rather the fever is her body's response to accepting her donor's cells. The fact that Kailee's temperature has been as high as it has, and has stayed elevated for as long as it has, is not typical for engraftment, but it could be... hopefully. Her counts seem to be coming in very slowly...but trending in the right direction. Slow may be good in her case, because at least she has had no signs of graft vs. host disease. Kailee continues to suffer daily with bone pain and frequent headaches. IV Morphine usually knocks it out for a couple of hours and then her pain resurfaces in a different spot. Kailee needed a red blood transfusion yesterday because she was very symptomatic with low hemoglobin. She was dizzy, weak, headachy, and nauseous. Her heart was working fast, and she said, "Mommy I need some blood." Unfortunately, she reacted to the blood transfusion, and that had to be stopped. After her body settled down from that, she received a different unit of blood and did well. I am happy to say, Kailee has not needed platelets since day +10. Today, her platelet count rose from 16 to 24. Some of the nights have been just awful. Saturday night was the worst. Kailee was awake from 1:00 AM until 6:00 AM. High fever, blood cultures on all lines, new IV antibiotics, terrible itching over most of her body, pain in various joints and bones, all in addition to a severe headache that did not resolve with morphine. That's a night no one around here wants to repeat! And now for the biggest trauma - Kailee is losing her beautiful, long, dark hair! It started on Wednesday and has continued since. Sometimes clumps at a time, but mostly just a constant shedding. She probably has only about 10% of her hair left, and boy is she mad about it. I am too, actually. I found myself in tears Thursday, asking just how much a little girl should have to deal with. I could go on and on about this, but I won't. Except to say, I don't think many people understand how significant this loss is for some. For the people that work here, I guess they see it all the time. The typical response is, "Oh Well, it will grow back." This is the one area of this entire disease/treatment process that I think we are left on our own to deal with. On a positive note, Kailee had a new visitor today...TILLY! It has been exactly four weeks since Kailee was admitted on October 31st and Kailee and Tilly were thrilled to see each other. Before the visit, Tilly had to go to the vet for a complete check up and lab tests to make sure she is healthy...there were hospital forms for the vet to verify her health and immunizations...then back home for a super bath by Dad. Now Tilly is set for visits for a period of 5 days. Then she will need another round at her vet again prior to further visits. I have posted a few pictures along with this update...One of Kailee's visits by friends, one of the three of us on Thanksgiving at the hospital, one of Kailee working on her Australia project early last week, and one of Tilly's visit today. We hope you all are well and that you had a good holiday. We miss you!!!
Love & Blessings -
Day + 14 November 21 Today marks the first day that Kailee's lab work has shown signs of engrafting! This is encouraging and exactly what we want to happen. Hopefully the donor's new cells are growing and not Kailee's Aplastic Anemia cells fighting to come back. If the donor's cells win then we will have engraftment. If Kailee's cells come back we will have rejection a second time. It will be a good month or longer before we know for certain about rejection or engraftment. Then we still have Graft vs. Host and infections from bacteria, viruses and fungus yet to worry about. Kailee has been in the hospital for 22 days straight with only a handful of side trips allowed out of her room. Twice to visit the Chapel and venture outside very briefly for a breath of fresh air and sunlight. A couple of walks down the halls when few people are out and about. Once to go to a conference room to trace Australia for an Atwater School project. Kailee has told us she wants to go to Australia when she is cured. Mommy has decorated Kailee's room to be as much like home as possible. Linda has a true gift for such things. Kailee has created a sweet home for her children, Mitzy, Ollie, Madeline, Clifford and more, by using tissue paper and tape to construct dresses, vails, trains, pillows. She even built them a television set with wire, paper, tape and coloring. We have had pennies, paper airplanes and cards tossed into a toy bucket contests. Kailee is teaching me how to play two square with a beach ball. (A down sized version of four square she has played at school.) Kailee continues to have pain regularly but far less than her first transplant. She is such a trooper. Linda and I are amazed regularly at her strength, determination, and wisdom beyond her years. This Thanksgiving our family will be happy that Kailee is with us and she has taken yet another baby step down the long road to recovery. Please take the time to show your family that you love them. Not with material things, but with your time, commitment, attention and love. Our journey has taught us true priorities. Adopting Kailee was the best decision Linda and I ever made. Sincerely,
Owen Wells
Day + 7 Monday, November 14 Thus far, Kailee is having an easier time than her first BMT. She has had some pain, at first, most likely Serum Sickness from the ATG. She felt like her skin hurt after her Radiation, but that disappeared within a day. We are pleased she is requiring far fewer doses of Morphine and the pain is less frequent and not as intense when compared to her first BMT. Kailee's ears are sensitive when she has taken her pain medicines so we have learned to be less noisy. Our doctors are very pleased with Kailee's progress. They like boring and so do we. We have played cards, Checkers, read many stories, including about the Wright Brothers and the five years of determination they required to build their first airplane. Kailee climbed into her window and painted Mommy a beautiful bright red rose two feet high. She has continued to paint, color, read, draw, play games, watch movies and cartoons of Sponge Bob. Mommy continues to encourage Kailee in so many wonderful ways. She did 200 Math problems today. She rides her stationary bike for twenty minutes straight. One of her painting was filled with huge amounts of yellow sunshine and pink warmth. She said this is her body without the Aplastic Anemia and in the four corners were little purple groups of new cells which she feels are growing in her body. Kailee said the new stem cells tasted like Peaches during her BMT. Peaches are symbolic of longevity in China. The Peaches feel like a very good omen to me. I had to share this with my Aunt Esther who we call Peachy. Lately, I have been positive and happy with an energy that I cannot say I have been able to express very well for some time. We have for so long had to live for today because we had no idea what tomorrow would bring. I have tried to stay optimistic and to live by example what I have been consistently working to ingrain into Kailee's thought process: "If at first you don't succeed, try, try again!" Kailee's BMT can be compared to a hurricane. Will it be a major category four or five doing lots of damage like Katrina or just scare us and fade away causing little harm out in an empty ocean? First, when the Chemo, ATG and Radiation hit it is like the first strike of the storm. Then, the calm while the body recovers and waits, much like the eye of the storm. That is where we now are, in the eye of the storm. Soon, we hope to see engraftment as the new cells start to show themselves somewhere around Day + 10 to Day + 20, if we are fortunate. Then shortly after comes the backside of the storm that always follows. In Kailee's case, will it be mild signs of Rejection and her new stem cells win as we hope and will Graft vs. Host be manageable without big problems and major pain? Can we keep infections at bay while Kailee slowly builds new cells and her new Immune System? Only time will tell. At 60 days post transplant we should have a good idea. Kailee will be at risk for at least six months, possibly up to two years. We do know this is Kailee's best chance. A chance we did not have until September 15 when we finally found her donor!
Owen Wells
Day + 2 November 9, 2005 Kailee has been having some pain and fever, either from Radiation or Serum Sickness from ATG. CBS Early Morning Show in New York will present a second segment on Kailee and our mission on Thursday, November 10. I am pleased to share that CBS is hosting a Bone Marrow Donor Drive on November 10 from 6:30 am to 9:30 am at their CBS Plaza at 5th Ave. and 58th Street in New York City. Please consider joining the National Marrow Donor Program registry with a simple finger prick blood test and signup form. The few minutes you spend could offer the Gift of Life for one of 35,000 people each year in the United States alone who are diagnosed with one of 70 illnesses that if alternative therapies fail may die without a marrow matched transplant. November 10 is the 230th Anniversary of the U.S. Marine Corps. As a proud former Marine, I urge Marines everywhere to come forward and join the Marrow Registry at their duty stations. I have received commitments from USMC Officers, including Major Anderson in New York City, that the Marines can be counted upon to help their former Marine. Semper Fi! CBS in New York and I have requested that all CBS Affiliates provide the location of the Blood Centers in their communities for many more people to join the registries world wide. Fortunately, Kailee has found her match and has a good chance to live and someday again have a normal life after her BMT. Now, please help us save so many others still in need! Sincerely,
Owen Wells Click here for more information about tomorrow's drive Tuesday, November 8th Day + 1 Dear Ones - "Mom, I feel like something new is coming inside of me...and it tastes like peaches!" (Kailee's comment as the new stem cells started to flow into her body.) Kailee frequently can taste various things that she receives through her veins, such as the salty taste of saline, so we were thrilled that to her the taste of her donor's stem cells was of peaches! Yesterday's transplant went very smoothly. It is wonderful to have an experienced transplant doctor who also has experience with THE patient. Dr. Margolis, in fact the entire team, has put a lot of thought into Kailee's first transplant experience and taken from it the wisdom to approach her second transplant. So far, things are going well. The radiation experience, while painless for Kailee, was emotionally challenging for all of us, but the radiation oncology team was just super. They were kind, caring, super smart and professional, and they took what could be a very scary experience and made it ... o'k. We are posting a few more photos of Kailee, getting prepared for radiation, resting with Mitzy after her radiation treatment, and with Mom and Dad in front of the beautiful door to her hospital room. Thank you for being there... Be well - Linda & Owen PS. If you would like, you can see the CBS Early Morning Show video on Kailee at their website through the link below: Click here: CBS News | A Mother's Love Finds Marrow Donor | November 8, 2005 11:00:05 Sunday, November 6th Day -1 Dear Ones - Kailee completed all of her chemotherapy and rabbit ATG about 10:00 this morning. All things considered, she is doing quite well. Not much appetite, but most of the nausea has subsided, and her need for pain medicine has decreased. She suffered another fever, rising to 104.6, as soon as I wrote the last update telling you her fever was gone. After all the blood cultures, cool cloths, sips of cool liquids, and what seemed like an eternity, the steroid seemed to get her temperature under control... only to be replaced with a humungous case of itching! Owen and I couldn't move fast enough with the Eurcerin spray, nor did it seem we could muster sufficient speed to chase her itches with our scratches. Thankfully, however, the itching is gone now, but Kailee and Steroid Monster keep us busy as ever. Tomorrow is Kailee's big day, with total body radiation at 11:00 am, and transplant of her donor's stem cells at 3:00 pm. Tomorrow, as you wake up, drive to work, take the children to school, enjoy your day, perhaps then more than ever, one more prayer from each of us, lovingly asking God to give Kailee strength, to keep her safe, and to give her health once again, will be the greatest gift any of us can offer. Please know, we simply love reading your entries in Kailee's web guestbook, and we are so uplifted to see that people from nearly every region of this world, near and far, have sent kind words. Your words are particularly heartwarming to read on this day. To all of you who have asked, the CBS Early Morning Show plan to air their story on Kailee Monday morning at 7:30 am. Warmly - Linda & Owen PS - We have just posted a few new photos of Kailee, one from Halloween, one of Owen and I giving blood products for her, and a couple of Kailee at the hospital this week. If you have trouble getting new photos or updates, remember to occasionally refresh your screen by holding down "Ctrl and Shift" buttons while clicking on "refresh." November 4th Day -3 Dear Family and Friends - Today, Friday, is Kailee's 3rd day of Chemotherapy. On Wednesday, she developed a fever that steadily increased and made her miserable. With a very low and decreasing white cell count, everyone was worried about infection. Various blood cultures were drawn throughout the night, and as her fever climbed to 104, three different IV antibiotics were added. Nothing seemed to bring her temperature down and during the night her blood pressure dropped. More IV fluid helped with that. The doctors and nurses worked diligently to figure out what was going on and finally, Thursday afternoon, Dr. Margolis gave her a dose of IV steroids. That did the trick. Slowly, her temperature returned closer to normal. Of course, she feels better without the fever, but Kailee still has trouble with nausea, probably from the chemotherapy drugs, and pain from the surgery. The nurses have been terrific with pain medicines and antinausea medication, and those seem to bring temporary relief. Today, began the IV drip of ATG, a serum made from rabbits, used to assist in wiping out her white cells. The last time, Kailee got really sick with the ATG, so this time everyone prepared for the worse. It's been going for 4 hours now, and so far, but for chills, it's not been nearly as bad. Radiation and transplant are still scheduled for Monday, and I cannot imagine anything that could change that. We understand CBS plans to air the first part of their Kailee story on Monday morning, and they will let us know the time on Sunday. The story is to continue on Thursday, with a bone marrow donor drive on the CBS Plaza in NYC, as well as at the CBS affiliates across the country. Many thanks to CBS for their interest and help with this worldwide need. Let's all say a prayer that this drive will find at least one match for someone searching. As always, we really appreciate hearing from you all, reading your emails, and your entries on Kailee's website guestbook, much of which we read to Kailee as she is up to it. Thank you for staying with us on this journey. Love - Linda
Day - 5 November 2, 2005 Dear Friends - As planned, Kailee was admitted to Children's Hospital of Wisconsin yesterday. In the afternoon, after a transfusion of platelets, she had a second central line placed in her chest during a one hour surgical procedure. Now she has four central access lines to receive the numerous drugs and blood products she will need over the coming days and weeks. After recovery, Kailee was admitted to the HOT Unit (hematology, oncology, transplant) to begin "conditioning" for transplant. This morning, she began the chemotherapy regimen with Fludarabine and Cytoxin and the various other drugs that necessarily go along with them. This evening she is receiving a blood transfusion as well as continued IV therapy for pain and nausea. So far, everything is going along as planned. Kailee has been a tad grumpy, but her urge to draw and paint is providing some relief. Last week, CBS Early Morning Show Anchor, Hannah Storm, came to our home in Shorewood, and CBS plans to air a couple of pieces on Kailee and the global effort on her behalf. The first is planned for 11/8 and the second airing of the Kailee Story and Donor Drive at their studios in New York is 11/10. Thanks for caring...Be well, Linda October 31, 2005 After a pleasant weekend and fun Halloween, Kailee goes into the Children's Hospital in Milwaukee, WI for the Second Bone Marrow Transplant, scheduled for November 7, 2005.
Owen Wells
Kailee's First Bone Marrow Transplant - 1/25/2005 - Photos
Dear Friends - BIG BIG NEWS HERE! Our suitcases were completely packed and at the front door, when we got word that the China Marrow Donor Program found THE GENETIC MARROW MATCH FOR KAILEE! This, after 3 1/2 years of searching; after searching through almost 10 million people in the world registry with no match, finally the donor we have been praying for walked in to a blood center somewhere in China. Kailee's doctor, Dave Margolis and our search coordinator, Kathy Jadarski, have had several communications with the people at the Red Cross Society in Beijing, the DNA analysis was confirmed, and the donor's consent confirmed just hours before we were to leave for the airport. Now, instead of going to China, we are preparing Kailee (and ourselves) for transplant. Apparently, the donor has just in the last several hours had his physical exam and will begin his preparation soon. It's as though the universe worked together to make this happen. We are truly stunned. Disbelief lingers in the air, but the doctor assures us THIS is what we have been searching for. Because Kailee's case is unique with all the overlay issues of a rare disease, a foreign born child necessitating international cooperation, a rare HLA type, and the lengthy search for a well-matched donor, Children's Hospital of Wisconsin drafted a press release that went out Friday. Below is the Press Release along with a Polaroid snapshot of THE TEAM when we all received the Great News! Love & Blessings Linda & Owen
FOR IMMEDIATE RELEASE NEWS CONFERENCE 2 P.M. TODAY, FRIDAY, SEPT. 16 Doctors and family optimistic about bone marrow donor match found in China for Children s Hospital of Wisconsin patient Kailee Wells MILWAUKEE (09-16-05) Linda and Owen Wells received news from Children s Hospital of Wisconsin yesterday that a very good bone marrow donor match has been found in China for their 8-year-old daughter Kailee. The family has searched the world since 2002 for a match for their daughter, who was adopted as a baby from China. According to David Margolis, MD, who leads Kailee s care team at Children s Hospital, further testing is underway, and both he and the family are hopeful for an October transplant. Margolis and the Wells family will comment at a press conference at 2 p.m. today at Children s Hospital. Kailee is expected to attend the conference, which will in the Clinics Building lobby conference room. Please arrive at the Clinics Building to be escorted to the event. Through the Chinese Marrow Donor Program, a well-matched, unrelated marrow donor has been found, said Margolis, program director of the Children s Hospital Blood and Marrow Transplant Program and associate professor of Pediatrics (Hematology-Oncology) at the Medical College of Wisconsin. Blood from the donor, an adult male, was brought to Milwaukee, and the match was confirmed by The Blood Center. Based on DNA sequencing, the donor matched on all 10 factors we look at. The donor has been contacted by the group in China and has agreed to donate. He is undergoing an extensive physical examination to ensure his health and ability to donate, and we expect to have the results of those tests next week. In January 2002, Kailee was diagnosed with aplastic anemia, a bone marrow failure syndrome that results in inadequate production of red and white blood cells and platelets. Patients with this condition experience anemia, as well as an increased risk of infection and bleeding during even normal activities of daily life. Since the diagnosis, the Albuquerque, N.M., family has relocated to the Milwaukee area to receive treatment from Margolis and Children s Hospital. They also spearheaded marrow donor registry drives both in the United States and China in their search for a donor for Kailee. A suitable unrelated donor was identified earlier this year through the National Donor Marrow Program in the United States, and Kailee received a marrow transplant at Children s Hospital on Jan. 25. The transplant was rejected, and the Wellses continued their search. We were to leave China today to continue our search, said Linda Wells. Our bags were packed and at the door when we received the news. It s been another 180-degree turn for us, and it s just beginning to sink in. Yesterday I was sure this was a dream I d be telling Owen about during our flight to China. Linda continued, This news is the culmination of the efforts of many people: the Chinese bone marrow registry, Dr. Margolis and every single person on the Children s Hospital team that has kept Kailee alive and well enough for a second transplant, the people at The Blood Center, even the teachers at Atwater School who have been donating blood and platelets since Kailee s rejection so we could limit the number of donors Kailee has been receiving blood products from. Everyone has gone above and beyond, and through this process more than a dozen donors have been found for other patients around the world. The hospital expects to be able to release updated information and facilitate additional interviews with Margolis and the Wells family Thursday, Sept. 22.
September 11, 2005 Dear Friends - As I hope you know, we have not been ones to complain about financial matters throughout this ordeal...but, this morning's email is so outrageous, I just have to share with you the type of craziness that often starts our day. This is the response that took close to three weeks to receive from the hospital in Beijing, answering my question about cost of Kailee receiving a simple platelet transfusion while in China. Our coder has worked with the physicians and lab to come up with an estimate of the charges for the platelet transfusion. Of course this is just an estimate and the physician may decide additonal labs or testing may be needed.
Estimated Charges p
€€ So now, we can begin our Sunday morning back at the drawing board. September 6, 2005 Dear Friends and Family - It looks as though all systems are a go for China. There have been so many obstacles that at times we felt as though this trip with Kailee may not be doable. Everyday a new problem seems to arise, but then, as quickly as I can say "Ah, a new problem..oh well, get to the back of the line, there are fifteen problems ahead of you," two or three on the list are resolved. The lesson for us has been persistence. There always seems to be some other way to solve the problem at hand. Whether the latest hurdle is how to get Kailee healthy enough to travel, how to keep her safe during travel (ie. airplane germs), how to make sure she can have blood and platelet transfusions in China, how to arrange for us to continue as her blood/platelet donor, what to do if she would have a reaction to a blood product, how to avoid problems with food and water, where to stay, how to get a Chinese cell phone, current passports, visas, travel immunizations for an immune compromised child, translation of the new poster, language barriers, time zone differences, etc....there has always been a way to solve the problem. A lesson just as important has been the fact that we have been able to do none of this on our own. Dr. Margolis and his colleagues have been generous with their time in communicating with the Chinese blood bank, the doctors at the hospital in Beijing, the China Marrow Donor Program, the China Red Cross, and with answering our questions. The communication network between people in China and the US is phenomenal. Every time we email someone with a question about.....logistics, for example, someone seems to know someone who knows someone, who knows someone with the answer. Our artist friend, Eric, designed the new poster, leaflets, and wrist bands which are being printed by one of Owen's suppliers and a factory in China. Our English text has been translated by a friend of a friend in China. The translation had to be converted into an electronic file, stored, and then sent electronically to the factory. How they do all that is beyond me. Our friend and artist, Corie, works a lot on the website, adding new pictures, adding our updates, and working on translation of the website into Chinese. Because of her efforts, the emails we get from kids (and adults) from around the world is eye-opening, to say the least. Before I forget, if you do not see the poster on the update section of the website, refresh the screen by clicking on the refresh button on your screen while holding down the Shift and Ctrl keys. Our new friends at Half The Sky Foundation (introduced to us by a journalist friend I first met last time I was in Beijing) at Half the Sky: Welcome are so amazing, I hope you will look at their website. This organization was started by an American woman who adopted two children from China. The number of people she has pulled together to work for the benefit of the children who remain in orphanages, what they have done so far, and what they continue to do for the children, is nothing short of awe inspiring!!! And, in the midst of everything already on their plate, they have graciously given us help, answered questions, pointed us in the right directions, arranged accommodations in Beijing for our family, and even offered to pick us up at the airport! I have been asking around what we could bring for some of the children. I understand the orphanages could use art supplies for the big kids, washable, sturdy developmental toys for babies and toddlers. So, if you know of anyone who would care to donate such things, we hope to take with us as much as the airlines will allow. We have to have it here quickly though, because we leave Friday, September 16th. Kailee is fortunate to have started school lst week, and is now a happy third grader. She is relatively stable, on a weekly cycle. Last Monday, she was covered with bruises and petechiae, and felt weak and dizzy. She received Owen's platelets one day and a couple of days later, blood. She then felt good to go for a couple of days until she started the slide to this week all over again. I donated platelets today, and she will get them Thursday. It's somewhat predictable at this point. Last week we received an email from the China Marrow Program, informing us they have 3 "perfect" matches for Kailee. Of course, they mean matching by serology, which is only the first step. So after about a million different emails, everyone has agreed to send those blood sample to Dr. Margolis for high resolution testing here. The Chinese are very excited, but as you know, we've been around that block b4. We'll just have to wait for the full test results.. Kailee is starting to look forward to the trip. We are looking forward to staying at the Hua Tian Hotel in Changsha where we first became a family in 1998. We have such wonderful memories there, Kailee's first bath, her first word "Ba Ba" (daddy), her first meal of DimSum (broccoli and fish; boy, were those the days). She is happy because by the time her big brother Mike and sister Taunya join us in Beijing, she will be a veteran at getting around and about the area. She particularly wants to take them to eat at the "food stalls" near the Beijing Hotel. She remembers well the photos I sent the last time I was there. So long for now... Take Care, Linda August 21, 2005 Dear Friends - We dearly appreciate your continued concern for Kailee and our family. We read Kailee's guest book and our emails regularly, but, as usual, never seem to have enough time to respond to everyone. Please know that your perseverance in sending warm wishes, thoughts, and prayers are what gets us through our days battling Kailee's bone marrow failure. Since we last updated you on Kailee, a lot has happened. On May 21st, I (Linda) flew to Karachi, Pakistan to check out a new adult stem cell protocol being studied for a multitude of diseases; aplastic anemia, muscular dystrophy, cancer, heart disease and others. The people conducting the study and those at the hospital I visited were gracious and kind. Although the technology may have merit, Owen and I concluded that the current procedure is not ready for our child. Of course, we were disappointed. Reminded by Kailee's unrelenting disease that decisions need to be made, we reviewed with Dr. Margolis, yet again, options currently available. For us, a second transplant using the same donor with a different conditioning regimen would be cruel...the treatment harsh with little chance of success. Kailee continues to be transfusion dependent. Her platelet count regularly gets below 10, sometimes as low as 4. Her neutrophil count recently got down to 80 or so, and her hemoglobin dipped to 5 something. Thanks to Kailee's teachers at Atwater school who have become regular and reliable blood and platelet donors, they along with Owen and I are able to keep up with her increasing demand for transfusions. Because her need continues, it is extremely important to keep her exposure limited to the fewest number of donors possible. And, we have had support, above and beyond, unbelievable really, from the Blood Center of Wisconsin. From the staff doctors who work through the unending and varying details of directed donation, to the people who schedule us nearly any time we need, and the phlebotomists who baby us through the needle sticks and hours on the machine, we are grateful. The recent passing of Sara, a sweet little 6 year old girl, also adopted from China by a loving family in California, felt like a kick in the gut. Like Kailee, Sara struggled to find a bone marrow match, but Sara died before locating a donor. http://www.marrowforsara.org/ If only we could get more people, of all ethnicity, to become committed potential donors, little ones like Sara could enjoy a future, and families like hers would be spared the gut-wrenching anguish of losing a child. Since learning that survival after a biologically matched transplant has improved to 95%, Owen and I have been preparing another all-out effort. In September, Owen, Kailee, and I are heading to China, first to Beijing to consult with our dear friend Mr. Hong Junling of the Red Cross Society of China, and then on to enlist the help of many other supportive people across China. We hope that taking Kailee to her original home will enrich her life and, just maybe, encourage China's continued great success in building their bone marrow donor registry, now at nearly 300,000 volunteers. We are thrilled to learn China has completed more than 280 unrelated transplants!!! We are then taking Kailee to Changsha and Changde in Hunan province where she spent the first year of her life. We are going to give our all to finding Kailee's Chinese parents. Only her Chinese parents can direct us to the geographical area most likely to yield a genetic match. Only her Chinese parents can narrow our search for the needle in the hay stack. Sara, and her family's unending efforts to save her, gives our family even more determination. Kailee's big brother Mike and big sister Taunya will be joining our China effort in early October. It brings tears of joy to realize our big kids love Kailee so deeply. With families of their own, Mike and Taunya will leave their home and work to make this an all-out family effort in China, helping get the word out about marrow donation and leaving no stone unturned to save their little sister. "Those who remove mountains begin by carrying away small stones." Chinese Proverb Love - Linda & Owen
Dear Friends of Kailee- June 27, 2005 Day + 153 Linda and I have been working hard carefully providing quality of life for Kailee. We have explored new medical developments abroad, some which may have promise, but it is unlikely that they will be ready in time for Kailee. We continue to especially encourage adult stem cell bone marrow and umbilical cord donation. While our family struggles with our decision on how best to save Kailee, we are even more determined to learn and educate so that more people may live. "With more and more countries aggressively developing stem cell therapies, the United States is in real danger of being left behind" National Geographic, July 2005, "Stem Cells - The Power to Divide", www.nationalgeographic.com . "While U.S. politicians bicker over embryonic stem cell research, doctors around the world are staging a quiet medical revolution." Newsweek, Summer 2005 Special Edition "The Future of Medicine.", www.newsweek.com, www.stemcellnews.com Only adult stem cells have ever been tested in humans! They are easily available from informed healthy adults and from baby's umbilical cords, normally discarded as medical waste with no risk to mother or child. Adult stem cells have no moral issues, unlike the embryonic stem cell debate currently in the news and before Congress. Please become knowledgeable on all stem cell possibilities and ask your fellow man to do the same. Become commited as a bone marrow donor! Sign up and give the Gift of Life so perhaps Kailee and others may live. Sincerely, Owen Wells, Daddy of Kailee Dear Friends of Kailee- May 25, 2005 Day + 120 The Stem Cell Research Enhancement Act passed Tuesday by 238-194, less than the 2/3rds majority required to override a Presidential veto. Please contact each of your elected Representatives who voted no and strongly encourage them to vote YES in favor of stem cell research should another vote become necessary. Also contact President Bush and our Senators for the upcoming Senate vote. Please include www.KaileegetWells.com in your communications. Our sweet Kailee's sad face and story are real as are so many others in need! This is not about party politics as usual. We are trying to save Kailee right here in the United States! www.nytimes.com/2005/05/25/politics/25stem_rollcall.html to see how your lawmaker voted. www.congressmerge.com/onlinedb/ to Contact your Congresspersons and Senators Sincerely, Owen Wells, Daddy of Kailee Dear Friends of Kailee- May 24, 2005 Day + 119 There are two Stem Cell Bills in the House of Representatives in Washington, D.C. to be voted upon right away. Please contact your elected representatives and strongly encourage them to support both bills today! The Castle-DeGette Bill by Mike Castle, R - Delaware, and Diana DeGette, D - Colorado. The Smith-Davis Bill by Chris Smith, R - New Jersey, and Artur Davis, D - Alabama. In addition, please contact President George W. Bush and ask him to support Stem Cell bills, not to veto them! Email - President@whitehouse.gov (202) 456-1111 Sincerely, Owen Wells, Daddy of Kailee Dear Friends- May 19, 2005 Day + 114 Who would have imagined that on the very night the Wells family packs one lonely suitcase in Wisconsin, destined for faraway shores this Saturday, each and every national evening news report would discuss the dramatic advances in stem cell technology abroad. It's true...at the same time conventional medicine here at home has little more to offer our dearly loved Kailee, we have been given hope in new stem cell technology being tested 8,000 miles away. As a truly great medical mind once said, "Either this treatment is on the table for Kailee or it's not." Well...we intend to find out! If it works, it has the potential of curing Kailee and millions of others suffering a multitude of diseases; aplastic anemia, muscular dystrophy, cancer, heart disease and others. If not...well, we need to know it...now! Kailee has had a rough last couple of weeks. We took her home to Albuquerque to visit her family and friends, and before we had the chance to visit everyone we had hoped, Kailee had an unexpected bleed and wound up spending eight hours in the emergency department. She needed a transfusion of platelets just to be able to fly her back to Wisconsin. Once here, she did well until Saturday, when to our surprise, she started bleeding again...this time much worse. She lost a lot of blood, but was the bravest child you could imagine. She needed platelets and a procedure in the ER to stop the bleeding, as well as blood to replace all that she had lost. Through it all, Kailee was a trooper. The doctors and nurses were amazed. The procedure she endured, the doctor told us, was rarely done without a general anesthetic...but our Kailee fought through it without. It was... traumatic ... but Kailee was an inspiration for us all. She knew what had to be done, she took deep breaths, and never flinched! Now, we need to do the same and determine, the best we can, whether this new stem cell research can save Kailee! Love & Blessings - Linda & Owen Dear Friends of Kailee April 28, 2005 Day + 93 Sadly, Kailee's marrow has returned with Aplastic Anemia. Therefore our choices ahead will be extremely difficult ones. Today, as Kailee gets another round of transfusions and prepares for her 13th bone marrow biopsy tomorrow, I keep thinking what can we do to find the special person that will match Kailee and Save her Life, while Kailee is still strong enough to survive a second transplant and, in all probability, her last chance at Life? I believe we must do another major push for bone marrow donation worldwide. The response would very likely find many matches for lots of deserving children and Give them the Gift of Life! If we are extremely fortunate, we could even find a match for our sweet Kailee! Right away, please go to everyone with high standards in the media that you can think of and send them requests for the Kailee Story! Tell them why in your own words. Encourage major programs such as: Oprah Winfrey, Larry King, Today Show, Good Morning America and others to join our efforts. Please help us Save Kailee and others like her. Please share your resources and contacts to help us get an audience with the producers of these good programs. "Thus far, we know of eleven matches and 205,000 people that our 50 drives in 15 states and five countries, with the help of many wonderful people, have contributed to. I have learned that a child in Houston, TX was the first American to receive marrow from a donor in China. That is such terrific news and I hope the beginning of big things to come from National Marrow Donor Program and the Red Cross Society of China. Help us Give the Gift of Life! A Heartwarming Mother/Daughter story is sometimes not enough. Professional journalism is big business and we can appeal to ratings. Kailee's story has been covered by Parents Magazine, the Today Show, the Associated Press many times, the New York Times, 14 articles in the South China Morning Post in Hong Kong, www.scmp.com February 2003. www.KaileegetWells.com received 732,773 verifiable web hits in March 2005. Go to any search engine under Kailee Wells and there are 1,000s of stories written by television, newspapers and magazines from all over the world. We need to reach even more people. This is about doing what is right for humanity. Please, I am just a Daddy desperately trying to save his little girl. Sincerely, Owen Wells, Daddy of Kailee
Dear Friends of Kailee April 15, 2005 Day + 80 Since Kailee rejected her donor's marrow transplant we were absolutely crushed. After waiting so long and hoping against hope for the absolute best transplant option to cure and save our child only to have our one best attempt fail with rejection was beyond despair. Kailee continues to need transfusions, although the timeframes in-between have improved slightly. Now, at least, Kailee's own marrow is returning. Will it be healthy marrow which could be fantastic news if it lasts or will the Aplastic Anemia rear it's horrifying head again? We do not know and there is no easy way to determine our much desired clarity. We are trying, very trying, to be patient and wait for long term trends in Kailee's lab work to give us clues to the answer. In the meantime, the three plus long years and many hospital hours have taken their toll and we as parents are just existing, working to take pleasure in the day to day tiny little things that we once so took for granted. We love each other and of course, Kailee, very much. We are trying to focus on enjoying one another and relearning to do a few things away from the hospital. It feels so alien, so unfamiliar, but we are starting to remember that we need to take care of ourselves as well. We have too! Our little girl is completely counting on us. The steps of our journey are just a bit easier to take with the companionship of so many who care for our sweet child, Kailee. As we talk of steps, I recall fondly, that Kailee took her first steps on April 16, 1998, from Daddy to her big brother, Mike on his and our other twin son, Ben's 23rd birthday. There are children we see in our good hospital whose names are not well known and for reasons, which we cannot possibly comprehend, have little parental companionship. Please send them the presents and care packages that you have been sending for Kailee to the Children's Hospital with the words Kailee Foundation and we will see that other children also have a few pleasures as they fight their fights against these terrible illnesses that so often claim our precious children. Sincerely, Owen Wells, Daddy of Kailee Dear Friends- April 1, 2005 Day + 66 Kailee continues with an increasing need for transfusions, mostly platelets. She is getting more symptomatic between transfusions, and the symptoms (bigger and more bruising and a showering of petechiae) start within days of receiving platelets. Of course, we just stay worried, but we do not want to begin another transplant unless her trend continues downward. The next week or two should give us a little more clarity. The National Umbilical Cord Blood Bank Bill 605 legislation is in progress! There will be a hearing on Capitol Hill, Monday, April 4, 2005. Please call upon your Senators and Congresspersons to support Bill 605 and to attend Monday's hearing! It's easy, just pick up the phone and call their offices. "Passage of the bill would create a National Cord Blood Stem Cell Bank Network to build a ready-to-use inventory of at least 150,000 top quality units to make matched stem cells available to transplant patients of all ethnic groups." (Robin Weiner/U.S. Newswire) NM Governor Bill Richardson signed a similar bill, sponsored by Senator Nancy Rodrigues, on Saturday, March 19 to honor Kailee's seventh anniversary of joining our family. There are eight states with similar bills passed or in progress. Our goal is to assist in passing National Umbilical Cord Blood Bank Bill 605 and to help pass similar bills in all 50 states. The following excerpt is taken from a recent New York Blood Center press release: Cord blood stem cells, obtained from the placenta and umbilical cord and donated by the mother, have been successfully used to treat [certain] malignant and genetic diseases. Cord blood is a non-controversial source of stem cells, which—unlike bone marrow—can be collected without risk of &nb "Today marks a new beginning in our unending quest to save lives," said Dr. Jones. "The introduction of this bill calls on legislators to recognize that patients in need of a bone marrow transplant do not have to die waiting for a match. There is another option: cord blood." Linda and I continue our ongoing request that everyone who is able, join a marrow registry by contacting the blood center in your area. Help by organizing a bone marrow donor drive. Let every expectant parent know that they can help by donating their baby's cord without charge to themselves. Together, we can save the thousands of people like Kailee who continue to search and hope for a match. Sincerely - Owen Wells, Daddy of Kailee
Below are information sheets about the bills introduced in Feb and Mar (2005) that would establish umbilical cord blood banks for the benefit of anyone having a blood disease such as leukemia or aplastic anemia etc, like Kailee and many others. There will be a hearing on Monday, so please call your Senators and Representatives to attend the hearing and support it.
House Bill # 596
Senate Bill # 681 If you're not in the Milwaukee area, use http://www.congressmerge.com/onlinedb/ to reach your Congresspeople.
http://www.nationalcordbloodprogram.org for more info. PRReleaseFeb8CordBloodBill-HR596.doc Friday, March 25, 2005 Dear Family & Friends Day + 59 I know we have been silent for several days now, but it has been time we needed to reflect on the last three years, years of unpredictable and relentless change, of constant uncertainty that has challenged our human capacity to withstand stress, all culminating in the last few months. It was in the first days of this past December that we set our course for Kailee's treatment to begin December 9th, only to wake up on the 6th to find we had suddenly veered down a different path. At first we were lost and had no idea where we were headed. In January we found our way and headed straight down the transplant highway. That route seemed to be going as planned, bumpy in places, down right rough in others, until in February ... we crashed into another dead end. Since that wreck, we have been muddling around, dazed by the impact. It is only now, a month later, that we are finally beginning to grasp the idea that the map we so carefully charted didn't get us where we hoped to go. Now, as we brush ourselves off and study new maps, we contemplate whether jumping back in the driver's seat is such a good idea. Kailee still fights the bone pain and nausea, and she seems to have increasing transfusion needs. She continues with IV fluids 18 hours every day and with IV drugs every 8 hours. Kailee's friend Meagen and our friend Lynn, Meagen's mom, came from Albuquerque to Milwaukee last week and spent a lot of time with us. They were so great! They spent the entire first day here with us at the hospital while Kailee received her teacher's, Ms. Northey's, platelets. (I posted a few pictures) The second day, Lynn and Meagen went sightseeing on their own, while Kailee rested, and Owen and I made a big turkey dinner to celebrate our "Family Day." March 19th was the seventh anniversary of Kailee joining our family. Kailee's friend Morgan and our friend Margaret, Morgan's mom, were to join us for dinner at 6:00, but at 5:30, after talking to Dr. Margolis, we decided Kailee needed a transfusion of red blood. So, instead of the festive dinner we planned, off we went to the HOT Unit, only to get back home about 1:00 am. But Lynn and Meagen were terrific, up early the next morning, off again on their own to see some of the many great things about Milwaukee. Sometimes, the twists and turns of our days remind me of my adventures in Africa...good times, great times in fact. Swahili language has a great word that, for me at least, encompasses all the adventures of life ... the word Safari. I used to view life as one big safari, an adventure, to live as fully as I dared, but my thinking was distorted by believing that I would eventually find my way back home. And that kind of thinking is what I am coming to see has caused us to be stuck in this three-year fog. We have been banging our heads against the wall, trying to get back home, to the solid ground we knew before January 16, 2002 (our personal 9/11). Thing is...some adventures are so big, so far, you don't get to go back. Perhaps, we aren't meant to go back. Thanks for Caring - Linda & Owen
Wednesday, March 16, 2005 Dear Friends - Day + 50 Kailee is still not yet back to square one, but she has good times among the bad. The pain has decreased, perhaps the narcotics, perhaps distance in time from the transplant. Her hearing sensitivity is a lot better, but we still smile when she mentions her "sensible" ears. Kailee really enjoyed her big sister Taunya's visit, although for the first day of the visit we spent about 9 hours at the hospital while Kailee received blood and platelets (her platelet count was 8) as well as other medications. She wasn't up to doing much the rest of the weekend but just enjoyed having her big sister here. As for where we go from here, no decision yet. The doctors and transplant coordinators have done another donor search through the world wide donor registries and have reported to us that no new potential donor matches for Kailee have entered the registry. Last Fall, people acknowledged that the decision we had to make was one no parent should have to make for their child, yet here we are again. We made a decision, the best one we could with the information available to us at the time. It didn't work...so what now? Try again, or try doing nothing. Everyone assures us miracles abound. With the thousands of people around the world praying for Kailee, surely God must hear. For now, Kailee remains transfusion dependent, continues on IV fluids 18 hours per day, plus an IV drip of antiviral drug every eight hours around the clock, a white cell growth factor IV every other day (her ANC was 187 on Tuesday with the GCSF), another antiviral (IVIG) weekly at the hospital, plus a myriad of oral medications throughout the day. We will let you know as we know more. Love & Blessings - Linda
Wednesday, March 9, 2005 Dear Ones - Day + 43 Kailee has had a tough few days with increasing pain "from top to bottom" she tells us. Yesterday at clinic was probably the worst pain she has experienced since the transplant itself. We couldn't even touch her because her skin hurt as well as her bones. She writhed and rolled around the hospital bed, sobbing, screaming until IV morphine brought about temporary relief. It was so very difficult to watch, agony for both for her daddy and I, as well as for the hospital staff I'm guessing. I can handle a lot... at times, I even accept that Kailee might die, but watching my child with this kind of pain brings me to my knees...sheer panic. I want to scream for something, someone to stop her pain...as if demanding it, willing it, could make it so. We started her back on methadone and morphine, and today Kailee is finally getting relief. She still has pain "all over" but her spirit is certainly better today. Owen and I disconnected her IV fluids for awhile, and we got her outside to enjoy some sunlight. Although the wind chill temperature was 9 degrees, she thoroughly enjoyed it, bundled as she was. And great news, Kailee's first ever friend, Meagan, and Meagan's Mom, Lynn, might come for a visit from Albuquerque later this month. They were planning to come in August but thought coming now might help Kailee...enjoying time with Meagan, just being a kid. When I told Kailee it might happen, I thought my eardrum would explode with her squeals of excitement! Owen and I met with Dr. Margolis yesterday, and it looks as though a second transplant will be our last hope. By the time a donor can be ready, we are guessing first week in April is when it should all begin again...that's if her body holds on that long. In an emergency, an umbilical cord blood transplant is an option and available anytime. If indeed we do go forward, we are told this time the transplant will either be successful or she won't survive it. Blood counts again tomorrow...we can only pray they are better than the drop from Monday evening counts to Tuesday morning counts. We continue to send you our love and gratitude for your continued support. Owen and I are trying to answer your emails, but in the meantime, please know we continue to read each one, even if it is 3:00 am when one or the other of us can't sleep, and we print them out so Kailee will always remember how much every one loves her and wants her to heal. Love & Blessings - Linda Saturday, March 5, 2005 Dear Ones - Day +39 It pains me to write this message, but so many of you have asked the results of Kailee's DNA test this week, that I realize we need to let you know what is happening. Over the last couple of days, various DNA and other blood tests have confirmed our fear that Kailee's tough little body has rejected the transplant. Yesterday, she needed a platelet and red cell transfusion, and her white cells require continued support with IV infusions of GCSF. Kailee's platelet count was 12,000 (normal is 150,000 to 450,000) and her hemoglobin was dropping a whole gram every couple of days. She was pale, tired, weak, and nauseous, and today she needed morphine for complaints of bone pain, presumably from the GCSF. So, while some say we are at square one, for me, we are at a place behind square one. As you know, Owen, Kailee, and I have waited and waited for the answer to conquering her Aplastic Anemia...after all the various drug treatments failed, all of the doctors involved concluded that a transplant would be required to knock out her disease. We searched and searched for a suitable donor. Dr. Margolis analyzed every conditioning regime and possible donor. When it seemed we were running out of options, we all held our breath, took the plunge, and Kailee bravely went through the transplant process. For a while, it looked as though it was working. It seemed as though her pain and misery might pay off in the end. Last week, we felt safe enough for Owen to go to Albuquerque for business. Yet, it is now day + 39, and here we are. Owen is on his way back to Milwaukee and will be here tonight. As I understand things, rejection usually means a death sentence. Because Kailee underwent a very new conditioning protocol, developed in Italy, there may be some things left to try. To me, it feels like a death sentence with an appeal process. The graft (transplant) is gone, yet we know Kailee's body is again making some cells on its own...so could her own marrow reboot? Theoretically it's possible. Waiting a few days will give us some indication if it might happen for Kailee. We are told that we must consider yet another transplant with radiation and more chemotherapy, soon. Of course, the donor may not be up to going through it again, and we have also to consider not putting Kailee through it again. Yesterday, at clinic, Kailee couldn't help notice my red eyes and tear stained face. Dr. Margolis tried his best to explain to Kailee what was happening inside her body. She really didn't want to hear much about it and had no questions. In typical "Kailee" fashion, today, out of the blue, she asked me what Dr. Margolis meant when he said her T cells are killing off the donor's cells. We went through it again and she asked if that means she needs another transplant. I told her, I thought the answer would be yes, but Daddy and I would agree to it only if she wanted to try again. Emphatically, she said "YES, I want to be done with this stupid APLASTIC ANEMIA!!!" So, for now, we are told, "enjoy her," "think quality time," "let a friend come over," "let her enjoy being home," "help her to enjoy her big sister's coming visit," "you have to weigh the risks of catching a virus against her quality of life," blah, blah, blah !!! We had to do all of that before, but at least then we had the fantasy of the transplant being THE cure. As we contemplate what's next, what to do next, the days will be more difficult than ever. Please continue sending your thoughts and love Kailee's way. She continues to | |||||
