5th Thanks Mom Drive 2007


4th Thanks Mom Drive 2006

 

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Children's Hospital of Wisconsin, Kailee's Hospital in Milwaukee

David A. Margolis, Kailee's Doctor at Children's Hospital, Milwaukee, WI

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!

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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:

  • 89 Focus Patients across the US
  • 269+ locations
  • 240 cities
  • 42 states + Washington D.C. and Puerto Rico
  • A goal of adding 20,000 potential donors to the registry (up from 6018 added last year)

    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 - 2/3/07


    February 7, 2007

    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,
    Kailee's Donor

    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
    www.KaileegetWells.com


    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:

    www.SaveCharlie.org

    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,
    Daddy of Kailee

    Day + 44

    December 21

    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 -
    Linda

    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
    Daddy of Kailee
    http://www.kaileegetwells.com/

    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
    Daddy of Kailee

    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
    Daddy of Kailee

    Click here for more information about tomorrow's drive

    Pickens County Marrow 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

    Press Release

    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
    Daddy of Kailee


    Kailee's First Bone Marrow Transplant - 1/25/2005 - Photos

    Saturday, September 17, 2005

    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

    The Team

    FOR IMMEDIATE RELEASE
    For more information contact:
    Stacey Mueller (414) 266-5420

    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 €€
    Office Visit - new 996
    Transfusion 438.24
    Observation Physician 2136
    Observation Facility 2400
    Lab and Consumables 2000
    Total 7970.24

    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
    Rep. Gwen Moore: 202-225-4572 http://www.house.gov/writerep/
    Rep. Jim Sensenbrenner: (202) 225-5101 sensenbrenner@mail.house.gov (include postal mailing address and phone #).

    Senate Bill # 681
    Senator Kohl: 202-224-5653 http://kohl.senate.gov/gen_contact.html
    Senator Feingold: 202-224-5323 russ_feingold@feingold.senate.gov

    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

    Briefing-CordBlood.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 need it now as much as ever.

    Love - Linda

    Monday, February 28, 2005

    Dear Family and Friends

    Day + 34

    Just a note to let you know I posted a few more photos from Kailee's days in the hospital and one of Kailee yesterday at home. The photo of Kailee receiving the light treatment to her cheeks is a fairly new study/treatment that uses a special light to help decrease mucositis that results from chemotherapy. She received the light for 71 seconds on each cheek for 14 days beginning on day zero. The photo of Kailee with her brother, Mike, bowling in the back hall was part of her physical therapy with Dr. Seigel.

    Tomorrow is another bone marrow transplant clinic day, and Kailee will have her blood tested again to compare the percentage of her DNA now coming from her new marrow to that from her old marrow. This is the test we told you about a couple of weeks ago. Let's keep our fingers crossed and say a little prayer that the donor's good marrow is the clear winner! I will keep you posted.

    Love - Linda

    Sunday, February 27, 2005

    Dear Ones -

    Day + 33

    "Momma, don't you remember that baby whales never wander far from their mother?"

    The night before we brought Kailee home from the hospital, she sat on the side of her bed for quite a while staring at one picture of two of her nephews. I asked her what she was thinking about, and she said she was thinking that she wanted to go home. I reminded her that we were going home the very next day. Kailee told me, "No, I mean home home." Again, I said, "We are going home tomorrow and you will be in your own bed."

    She then said, " I want to go to my home in Albuquerque." I told her that her home is now in Shorewood. That's when she said, "Momma, don't you remember that baby whales never wander too far from their mother?" I'm sure I responded with a curious look, because she went on to explain "I know you are my mom, but I feel like Albuquerque is like my mother too. It was the first home I ever remember, and besides 'real' home is where your family is. Home is where my brothers and sisters and nephews and niece are...and my first friends Meagan and Maya." Her words brought me back to the reality of how her illness has impacted her young life. She may be young, but she knows what's really important. I promised her that as soon as Dr. Margolis said she was strong enough, we would go to Albuquerque for a visit.

    Speaking of Dr. Margolis, last night Kailee and I watched the movie Patch Adams. Wow, did that remind us of Dr. Dave. We haven't had a chance yet to ask him if he has seen the movie, but there were striking similarities. Although we haven't seen Dr. Margolis wear a big clown nose, he regularly sets the kids up to squirt nurses (or residents) with a syringe of saline, which, of course, encourages the nurses to set the kids up with full syringes for the good doctor. In the movie, Patch is telling a crowd of medical people, "If you treat the disease, you'll win some and you'll some. If you treat the patient, I guarantee you, you will win!" That pretty well sums up how we have experienced Dr. Dave's approach to medicine. Anyway, it is an awesome movie, and we think it should be required viewing for all doctors.

    Back to Kailee, yesterday was great. She was up and around...spent time in her room...time on the computer...only minor complaints of pain...and then promptly had a melt down by late afternoon. It was the first day she had energy, and I think she was surprised when she suddenly tired.

    Kailee's counts are still not great. She received a red blood transfusion (donated by a teacher from Atwater School) a few days ago for low hemoglobin, her platelets fluctuate between 20k and 40k (normal is 150k - 450k), and her white cells are still getting support from IV GCSF. Kailee remains on IV fluid 24 hours a day, gets daily IV medication to help prevent viral infection, takes about 9 pills in the morning, a couple in the afternoon and about 9 more in the evening. This is in addition to spending 3 long days at the hospital's transplant clinic since discharge and Owen and I taking vials of Kailee's blood to the hospital on two other occasions. So, it's disheartening when those counts don't climb through the roof...but we continue to look for the good in each day, and wait...

    Love to all - Linda

    Wednesday, February 23, 2005

    Dear Family & Friends -

    Day +29

    Guess who is safely tucked into her very own bed tonight? It is true! Kailee was discharged from Children's Hospital Hot Unit, and by all objective measures, she is doing just fine. She rarely complains of pain now, her blood pressure is back to normal, her new marrow continues signs of engraftment, and she bears no signs of graft versus host disease. Is this a miracle or what? Although the medical team reminds us "she is not yet out of the woods"... Kailee sure is in a better place than we feared she might be 29 days after her bone marrow transplant.

    There is so much Owen and I want to fill you in on, but our transition from merely "worried parents of hospitalized child" to "worried parents of recently hospitalized child plus amateur doctor, nurse, housekeeper, dietitian, physical therapist, psychologist, pharmacist, second grade teacher, maintenance person, bread winner...relentlessly demands immediate attention.

    For now, please know that your continued concern and well wishes for Kailee, sustain each of us, each and every day. I hope to tell you more tomorrow and to have a chance to take a photo or two of her at home.

    Love & Blessings - Linda

    Tuesday, February 15, 2005

    Dear Ones -

    Day +21 continues...

    We want you to know that Kailee seems much better this afternoon. In fact, somewhere around noon, Kailee seemed to suddenly "clear up." Her primary nurse, Kim, and I looked at each other with surprised delight...whaaat happened? It was so exciting to see the old Kailee return! She yipped with delight when I reminded her that her brother's plane from Albuquerque was landing at that very moment, and a little later, she beamed when her brother and Dad walked into the room!

    Dr. Margolis came to examine Kailee and reassured of her improvement, decided to hold off on the MRI and spinal tap. Earlier, Dr. Margolis suggested that Kailee's latest troubles were likely caused by one of the most recent additions to her already complicated list of medicines. However, always vigilant for the safety and well-being of his patients, we watched as he carefully peeled away each layer of Kailee's latest puzzle, cautiously avoiding disruption of that which is working and delicately yet swiftly eliminating that which is not, all the while keeping sight of the forest in spite of the trees. I don't think he would mind if he knew I shared a quote he carries from his medical school graduation. It goes something like "If when you are first faced with a problem and you don't know what to do, 'Do nothing stupid.' If after you have thought and thought about the problem you still don't know what to do, add a comma, and 'Do nothing, Stupid.'" True to his theory, 24 hours after the last dose of the offending agent...Magic! Kailee actually leapt into Mom's arms and exchanged a huge hug, snuggled with her adored and adoring brother Mike, opened her Valentines, and beat her Dad at Checkers....you can see for yourself on the photo updates. We think Dr. Margolis is a genius!

    What a roller-coaster ride! We are almost hesitant to send more updates. Things change so fast around here, by the time we hit the "send" key, something new is going on. But since you faithfully ask how Kailee is coming along, we think we should share the good and the bad. It is life in a whirlwind, and do we ever appreciate having you to share it with. It feels like I imagine an old Oak tree would feel in its struggle to stand against gale force winds supported by miles and miles of long, sturdy roots.

    Love - Linda & Owen

    Tuesday, February 15, 2005

    Dear Friends -

    Day + 21 and day 28 in hospital!

    Just a quick update to let you know Kailee's status. Although Kailee's counts have been climbing with continued use of GCSF, yesterday was a tough one for her, as well as for her family and nurses. Pain and misery is about all we can say for it. Because of her continued headache and mental status...crying, memory issues, confusion, etc. Dr. Margolis has ordered an MRI of her brain for this afternoon and a spinal tap for tomorrow morning. He thinks we need to rule out some type of virus in her brain. Hopefully her symptoms are because of all the drugs she is on and the length of time in hospital, but wisely, he wants to be sure.

    The plan was to try to get her home Thursday, but now I'm not so sure. The doctors want her out of the hospital, because they say the place is full of RSV and other viruses that we need to protect her from. The little girl in the room next door has severe pneumonia, and we can only be concerned about staff spreading it. They had wanted to send Kailee home with nursing care, but when the time comes, I think we can take care of her ourselves.

    For now it remains a day at a time. All my best - Linda

    Saturday, February 12, 2005

    Dear Ones -

    Day +18 and day 25 in hospital!

    Kailee is doing o'k. The DNA tests she had last week did show that the new marrow is struggling to take hold...that a battle rages within Kailee's body. After much medical analysis and discussion among colleagues, Dr. Margolis concluded the best approach was to start Kailee on I.V. GCSF, a drug that stimulates, pushes, and prods bone marrow to produce white cells. But, of course, as with most drugs, GCSF has good and bad aspects. The good news is that the drug indeed has increased her counts to where they were before the drop earlier this week. The increase tells us that although engraftment of the new marrow is being challenged, it has to be viable or there would be nothing for the GCSF to stimulate. So, our little one is still in the fight.

    The bad news is that this drug causes Kailee more pain than any little girl should have to endure. Most of the time, she tells us that she hurts all over, that "every single bone" in her body hurts. It makes sense when you think about the new marrow "seeds" finding their way to the center of every bone, laying down in the garden bed, and suddenly (with the help of a little nuclear level fertilizer) exploding into beautiful little bedding plants, all in a confined space.

    All of Kailee's medical team works very hard to eleviate her pain. The morphine drip has necessarily increased rather steadily. It is always a struggle to find the balance between relieving her pain, keeping her awake, and not suppressing her breathing. Dr. Kim from the pain team works with her on other pain relief measures, such as breath control and healing images. Through play therapy, Dr. Suzanne from psychology works with Kailee on the effects of long-term illness and hospitalization. Anne and Jill from Child Life helped Kailee make a "Dream Catcher" to get rid of bad dreams and keep the good. Physical therapy continues to work with Kailee every day to keep her moving, and Kailee started learning about fractions with the hospital school teacher (the latter being rather amazing considering the amount of morphine she... Kailee, not the teacher...is on and the number of people who have trouble with fractions when not muddled by morphine).

    We cannot thank you all enough for the continuing kind words, love, and prayers we feel coming this way. Please know that Kailee continues to enjoy your Valentine cards, the Chinese New Year gifts and cards you've sent, the emails you send even though she has not been up to responding just yet, and the drawings and photos we hang on the walls. Although she is not up to talking on the phone, Kailee has enjoyed a few visits from school friends, even though they consist of waiving through the glass window of her door and a few words on the telephones between the room and the antechamber to the room. And, Owen and I truly appreciate your continued love and support. Our big kids have never missed a day of calling to check in with us, and it is such a comfort to talk with or get messages from the rest of our family and friends. It is great to be reminded that there continues to be another world outside of this hospital, and I have been rescued from some of my toughest times by talking with Margaret, Sue, Sharon, or Susan. Thanks.

    We love you all! Linda & Owen

    Tuesday, February 8, 2005

    Dear Friends and Family -

    Day +14

    Just a brief note to share with you our new concern. Today we woke to a sharp down turn in Kailee's counts. Everything that looked so hopeful over the last few days, now raises the red flag of rejection. Her counts will be repeated later this afternoon, and we are hoping to get the results of a DNA test that will tell us what percentage of her DNA is from new marrow and what remains of her old. That test will be more definitive of what's going on, so let's pray this is just a temporary bump in the road. Warmly - Linda

    Monday, February 7, 2005

    Dear Friends -

    It's Day +13! Kailee's blood work shows continuing signs of engraftment! Her new marrow continues to make red cells and white cells, and her neutophil count has climbed to 513 today! That number takes her out of the super dangerous zone for bacterial and fungal infections, however, those nasty viruses are still cause for concern. According to Dr. Margolis, our best defense?..."HAND-WASHING! HAND-WASHING! HAND-WASHING"!!! We are happy to let you know that Kailee's pain is lessening and her blood pressure is stabilizing. No more itching, no more serum sickness, and no more STEROIDS!!! Yeah!

    She has been out of the room for a walk in the hall both yesterday and today, and it has done wonders for her spirit. Today, Kailee slept until afternoon, catching up on her rest.

    Tomorrow will be our 3 week anniversary of coming into the hospital, and today was my first trip out. My dear friend Margaret picked me up for a quick trip to a store and lunch at City Market. I know it was a good time to go, but boy was it hard. Although Margaret is always a comfort and a joy to be with, and Owen was at Kailee's side while she slept the entire time, my heart ached to be here with her and yearned to get back.

    This evening was special. Kailee received two packages from her teacher, Ms. Northey. One contained class photos and a DVD of Atwater's Winter Sing, held just about the time of Kailee's transplant. It was with mixed emotions that Kailee watched her classmates perform songs they had once practiced together. Quickly Kailee taught me the songs, and we sang them together while enjoying the recording again and again, looking over happy group photos of the entire class, all the while Kailee received the second package; a transfusion of Ms. Northey's platelets. What an honor to be part of it all! I hope you enjoy the new photos I have posted.

    Continued love and thanks for the cards, emails, and packages. It is with a daily joy that we receive and share your warm wishes!

    Love - Linda & Owen

    Saturday, February 5, 2005

    Dear Ones -

    Day +11 and Great News!!! Kailee's blood work shows signs of engraftment...YEAH! Her white cell count has slowly but steadily increased each of the last couple of days from wbc = 0.0 -> 0.2 -> 0.3 on Feb. 1st -> 0.6 on Feb. 2nd -> 0.8 today, Feb. 5th. Keeping in mind that normal is 4.0 12.0, these numbers are very, very low, however, the chemotherapy having destroyed Kailee's ability to make any cells on her own, this steady increase of white blood cells shows us the donor's marrow is working in Kailee. The blood tests also show Kailee's new marrow is making some red blood cells, and her neutophil count is climbing from 0.0 to 300 yesterday and 400 today!

    While this is great and the doctors are very happy with Kailee's progress, we are reminded to remain cautiously optimistic. Now that the new marrow is beginning to sprout new cells, Kailee's body can decide the new marrow is a foreign invader and reject it all together, or the new marrow can decide that Kailee's body is the foreigner and attack her!

    Yesterday and today, Kailee continued with severe headache pain, so today, Dr. Margolis ordered a CAT scan of her head and sinuses, just to make sure an infection wasn't brewing. Thankfully, the scan was negative...and Kailee enjoyed her first time out of this room in 18 days! Many of her medicines were reduced in dosage or frequency, and we changed her pain medicine back from dilaudid to continuous IV morphine drip. The changes seemed to have helped, and she truly has had a better day than the past couple have been. She played checkers with her Dad, worked on her reading with me, and got Dr. Margolis with a syringe full of saline.

    Last night, after Kailee finally dozed off, I read the February issue of CHILD magazine. I was thrilled to see that in an exclusive survey of the 10 Best Children's Hospitals, Children's Hospital of Wisconsin ranked # 1 in Emergency Medical Care, # 5 in Cardiac Care, and the # 3 overall Pediatric Hospital in the nation. Hours later, both Kailee and I were awakened by lights streaming through our window, filling the room with an eerie glow, while the heavy lub-dub sounds of the hospital's helicopter eased in to the trauma center below. My first thought was of "incoming wounded" on the old television show MASH; my second was of the child on that emergency flight and how fortunate she was to be landing here.

    We will keep you posted on Kailee's counts...

    Love - Linda

    Thursday, February 3, 2005

    Dear Friends -

    Wow! Yesterday was a tough one...but the good news is that today was better. Kailee spent much of yesterday whimpering in pain. She said she felt like every bone in her body was cracked! Thankfully, tenacious medical detective work helped get to the root of her pain. Aggressive management of her blood pressure has helped with the "brain pain" and that has helped with the "all-over" pain.

    Today is Day +9. We are still waiting for signs that the donor's marrow is taking over, but the wait is helped by the continuing good wishes from...well, Everywhere! Today, Kailee woke to a HUGE 4 foot x 5 foot banner signed by just about everyone at Kailee's school. (See photo)My, oh my, how that made her day! She was quite surprised that so many people she has yet to meet signed it and sent good wishes her way. She said it makes her feel special. As does each card and note she receives.

    Today, Kailee received messages from several Wisconsin friends; from the Johnson's, the first ever transplant family in Wisconsin; from Jean, the first marrow donor ever in Wisconsin; from the Karsten's and the Flannery's and several other transplant families who know all too well what Kailee is going through; and from many of her New Mexico friends and family as well. I know I have said this often, but we remain amazed and appreciative that so many people, such as Noralee, a school bus driver in Wyoming, and Chief US Magistrate Judge Lorenzo Garcia and his staff, take time from their busy lives to send good wishes to a little girl struggling to get well. Kind words really are so uplifting...

    "Grow cells grow."

    "Kailee has been such an important part of my morning and evening prayers. I happen to be a Buddhist but I find it so beautiful that people of every faith and philosophy are pulling for Kailee in their own way. "

    " I am stunned by the picture of you taking tea with a lovely young lady. You look so graceful and beautiful that you would not look out of place at Buckingham Palace. I know that the pain is sometimes too, too much for a tiny girl. But you have shown the world that you are a little girl with the heart of a young lioness all those three years and you have never let that sunshine smile leave your face. We adore and love you for it. "

    "Your courageous battle has touched the hearts of countless New Mexicans."

    " It seems odd to be going about our lives doing what we always did...I feel blessed that you have come into our lives, and to have a place in your journey.

    "Your sweet smile will continue to warm a thousand hearts and your strength is admirable of such a young girl your age."

    Thank you all for accompanying us on this journey!

    Love - Linda & Owen

    Tuesday, February 1, 2005

    Dear Ones-

    It's Day +7! Kailee came to the hospital 14 days ago and had the transplant 7 days ago! She continues to have pain "everywhere" she says, and today she seemed exhausted. She did not get up until Noon, but Dr. Margolis assured us that after 14 days and nights of all that she has been through, she has earned the right to sleep all day if she wants. When she woke, I told her that her Dr. said she was in charge of today. She liked that idea.

    The good news is that this is the first day in a while Kailee has had reasonable blood pressures...no significant rises that required the fast-acting drug.

    For now, the vigil continues, waiting for the daily lab results for signs of donor engraftment while protecting Kailee to the best of all our ability from the dreaded viruses, bacteria, and fungus that lurk everywhere. She remains blood and platelet dependent with counts that hover around zero.

    Owen and I continue to be sincerely awed by this hospital! I feel like no stone is ever left unturned for the children. Dr. Margolis continues his frequent assessment of what is happening with Kailee and to juggle all the medicines needed to help this, stop that, prevent this, cause that! And the comforting thing is that everyone involved in Kailee's care is recognized as an integral member of the team.

    I wish I could pass along to other parents the advice we received early in Kailee's illness. A woman at the Aplastic Anemia association suggested that we look for a treatment facility that was expert in Kailee's disease as well as in bone marrow transplant. There is no question in our minds, we did.

    I added some new photos of a few of Kailee's good times on day +5 and +6. The clown, Pingo, was great at diverting Kailee's attention away from pain and discomfort to fun stuff!

    Jill, the Child Life Specialist, set up a blanket on the floor of our room so that Kailee could work on crafty things...and, please note, Kailee working on school assignments from Ms. Cathy, the hospital school teacher, and Ms. Northey, her regular second grade teacher.

    Looking at the pictures remind me to see the good in each day. This experience has transformed me from a person who always focused on the future or dwelled on the past, rarely appreciating the present, to a person who truly knows, today...this moment is all we really have...all we can do anything about.

    Love & Blessings - Linda

    Sunday, January 30, 2005

    Hello from the Wells Family, Firmly Ensconced in the CHW HOT Unit-

    Day + 5 ! Since we last updated you on Kailee's progress, she has continued with varying degrees of serum sickness as a result of the ATG she received during the conditioning phase of her treatment. ATG, antithymocyte globulin is made from the serum of a rabbit, and is effective in reducing rejection of the transplant and GVHD (graft versus host disease) each of which we will start worrying about at approximately day +15. Sadly, Kailee's pain from the serum sickness still seems to be a big problem! Sometimes she rates it at a 50 on a scale of 1 to 10...sometimes just a 10. The doctors again today increased the dose of pain medicine she receives by continuous iv drip, but we have yet to see much of a difference. For the serum sickness, Kailee also has required increasing doses of iv steroids... and guess what? The increasing dose of steroids causes her blood pressure to rise into the dangerous zone. So...yesterday she was started on a regular daily schedule of blood pressure medicine to supplement the rapid acting, under the tongue drug she gets when her pressure gets too high.

    Today, Kailee was given her first dose of the drug Rituximab with hope of preventing the EBV virus from taking over. This is in addition to the drug she gets to prevent the CMV virus from reactivating, and the three other drugs given to prevent bacterial and fungal infections.

    Tomorrow, Kailee will get her last dose of Methotrexate, a chemotherapy drug that was started after the transplant to prevent GVHD.

    Through it all, our Kailee remains the ever-strong fighter...usually her loving, charming self, but then...the steroids kick in...ick...definitely a drug with which we enjoy a "love-hate" relationship! As an example, yesterday on "rounds," the resident described Kailee as "quite pleasant" that morning when he examined her. I thought Dr. Margolis might just blow a gasket right there. Clearly, the resident had not accurately assessed the Kailee Wells he just saw. The poor (or lucky, depending on your perspective) resident had not seen Kailee's reaction when Nurse Jill told Kailee that her boyfriend was here (referring to Dr. Margolis). If you remember the movie The Exorcist, you'll have a fairly accurate picture of one 8 year-old girl's idea of having a boyfriend just now.

    Our Kailee continues to receive the most touching, heartfelt notes and cards and emails I have ever read. We thank each of you who has taken the time to think of her. We want you to know that each and every message she receives gives Kailee added strength to face her days, her pains and her worries, and to continue her fight to return to the little girl's life she enjoyed only briefly. The following is an excerpt of just one card that brought tears to my eyes:

    ....."We wanted to let you know, that in honor of you, we are naming our little girl Kailey. Our hope for our new daughter is that she stands strong in the face of adversity, is blessed with a healthy, long life and has the will to face anything that comes her way. These are all the things we wish for you my dear sweet Kailee. We have seen you face more struggles and battles than any little girl should ever have to endure. We are continuously strengthened by your sweet smile, grace, and most importantly your zest for life. Be strong, dear one."

    ....from a Wisconsin family we have never met.

    I have added new hospital photos taken since Kailee's transplant. Just click on the link "Photos from the hospital" above.

    So long for now...Love & warm wishes - Linda

    Thursday, January 27, 2005

    Dear Ones -

    It's amazing to realize that so much of our focus over the past three years has been on finding an acceptable marrow donor for Kailee and deciding whether we should put her through such a risky procedure, and here she is at day +2. Yesterday and today have been one long roller coaster ride...continual ups and downs...and a few curves here and there. Although Dr. Margolis reminds us that everything Kailee is going through is pretty much typical transplant stuff, it isn't easy for Kailee to go through or for us to watch.

    Yesterday morning was quite good. Kailee was happy, playful, and feeling fairly well. But by late afternoon, she was in quite a bit of pain and put back on her continuous morphine drip.

    This morning, beginning bright and early at 7:00, she started with increasing symptoms of serum sickness from the treatment with rabbit ATG. Throughout the day, our little one has had bone pain in her legs and arms, chest pain when she breaths, severe neck pain that restricts her movement, and what she called "brain pain." Equally difficult for her has been bright red, itching welts all over her body, on her scalp, in her ears. That caused about as much misery as her pain, and her continual itching leads to bleeding skin.

    Thankfully her primary doctor, Dave Margolis, the resident doctors, the Hot Unit pharmacist, and her nurses have worked together to adjust various medications in hopes of getting her symptoms under control. After an increase in steroids, an increase and change of antihistamines, and a change of pain medicine from i.v. morphine to i.v. dilaudid, perhaps the most help, at least for the itching has come from an old fashioned bed bath with an oatmeal mix. Relief only lasts an hour or two, but we just repeat the oatmeal bath and she feels better for a while.

    A good thing is all the good wishes coming Kailee's way have helped to keep her spirits up. I read to her each card and email she receives, and she remains continually amazed at that fact that people from all over the world care about how she is doing and take time to send her messages, photos, and cards. In addition to well wishes from family and friends across the US, Kailee has received messages from Australia, Egypt, China, Hong Kong, and Europe. Each one gives us an opportunity to talk about places new to her, and plan for adventures we hope to share in the future.

    For now, take care, we love you, and we value your being with us in spirit during this journey!

    Love - Linda & Owen

    Wednesday, January 26, 2005

    Dear Family and Friends -

    Day +1

    Today has been such a full day. Kailee had a good morning, but a rough afternoon and evening. The hospital as well as Dr. Margolis, Owen and I have received so many inquires from the media as to Kailee's post transplant condition, that we asked Dr. Margolis and Children's Hospital to issue a statement on his and our behalf. Owen and I choose to devote our energies solely to our little girl. Dr. Margolis graciously agreed to attend a media conference this afternoon and to issue the following public statement:

    Children's Hospital of Wisconsin patient, Kailee Wells, 8, underwent a bone marrow transplant on Tuesday, Jan. 25 for treatment of severe aplastic anemia

    MILWAUKEE (1-26-04) Kailee Wells, 8, and her parents Linda and Owen have received worldwide attention while searching for a bone marrow match for Kailee, who was diagnosed with severe aplastic anemia in January, 2002. The Wells family, of Albuquerque, New Mexico, sought treatment from David A. Margolis, MD, program director of the Blood and Marrow Transplant Program and the team at ChildrenG †€™s Hospital of Wisconsin. Margolis is an associate professor of Pediatrics (Hematology-Oncology) at the Medical College of Wisconsin.

    Aplastic anemia occurs when the bone marrow produces too few of all types of blood cells: red cells, white cells and platelets. A reduced number of red blood cells causes the hemoglobin (a type of protein in the red blood cells that carries oxygen to the tissues of the body) to drop. A reduced number of white blood cells causes the patient to be susceptible to infection.

    It was determined that a bone marrow transplant provided the best treatment option for Kailee, based on shared research and information in the field,G †€ť said Margolis. G †€śTechnology has enabled us to determine that a suitable alternative match was identified through the National Marrow Donor Program, and Kailee underwent a bone marrow transplant on Tuesday, Jan. 26. We now are waiting to see if the transplant will allow Kailee to grow new, healthy blood cells.G †€ť

    Linda and Owen Wells launched an exhaustive worldwide search for an appropriate bone marrow donor for Kailee, who was adopted from China. They raised a great deal of awareness about the importance of worldwide marrow donor registry, traveling to Shanghai and other parts of Asia. G †€śWe are grateful to the anonymous donor who enabled Kailee to undergo the much needed transplant,G †€ť said Linda Wells. G †€śKailee did well, with relatively minor, but not unexpected, reactions to the new marrow cells. As always, Dr. Margolis and the entire medical team were on top of things at all times. We were comforted by knowing she is in the best hands anywhere,G †€ť she added.

    Linda and Owen Wells now are devoting their energy to caring for Kailee while she is treated as an inpatient at ChildrenG †€™s Hospital. They prefer to remain in contact with the media through their Web site at kaileegetwells.com

    Tuesday, January 25, 2005 Dear Family & Friends-

    What a day! Kailee's transplant started at 1:15 this afternoon and finished about 6:15 this evening. As hoped for, Kailee's donor sent a very generous amount of marrow, and we will always be grateful. We are sending her love and gratitude and warm wishes for her own speedy recovery.

    Kailee did well, with relatively minor, but not unexpected, reactions to the new marrow cells. As always, Dr. Margolis, Nurse Jill, and all of the medical team were on top of things at all times. Even when Kailee's signs & symptoms were evolving by the minute, we were comforted by knowing she is in the best hands anywhere.

    Now, we will wait for the new seeds to sprout in two to three weeks and do our very best to keep Kailee safe from infections and bleeding and her spirits up!

    For some reason, we were all very calm and relaxed throughout the day. I think we have been feeling all the loving kindness sent our way.

    Warmly - Linda & Owen

    Tuesday, January 25, 2005

    Dear Ones -

    It's day zero! The bone marrow transplant is underway...started at 1:00 pm Milwaukee time. It should take about 4-6 hours. Please send all your love and blessings Kailee's way.

    Love - Linda & Owen

    Monday, January 24, 2005

    Dear Ones-

    Day -1 and all systems are go. We are thrilled, and so very thankful, to learn that Kailee's marrow donor successfully came through her procedure earlier today. We don't know who she is or where she is, or what motivated her to register with the National Marrow Donor Program. All we know for now is that her marrow donation is expected to arrive at the hospital at midnight tonight, and that somewhere a caring, loving person is giving our little girl the gift of life and hope for a future we didn't have without her. Whatever the outcome, we thank her with all our heart.

    As for today, Kailee had the best day since day -7. Most of the drugs are finished or decreased. Tonight will be the first night that she can sleep without hourly interruptions.

    And boy oh boy, did her nurse, Jill, keep her on a tight schedule. Kailee had physical therapy on a stationary bike here in her room, the hospital school teacher worked with her for at least an hour, Kailee participated in a research study on the psychological impact of transplant, Kailee's friend Morgan came to visit, and Kailee and nurse Jill worked on decorating the room and her bike. I hope to share some of the photos with this update.

    By all appearances, the "conditioning" protocol Dr. Margolis recommended for Kailee has put her little body in exactly the right shape for tomorrow's transplant. The chemotherapy completely destroyed what little bone marrow Kailee did have. Dr. Margolis analogized that we hit the "control - alt - delete" buttons and after tomorrow's transplant, we wait for her marrow to "reboot."

    At this point, Kailee's blood counts are frightening, but as expected after conditioning. The medical team closely follows many of the various components of Kailee's blood and adjusts "the flight plan" accordingly, but we anxiously await her daily, Hemoglobin (HGB), White Blood Cells (WBCs), Absolute Neutophil Count (ANC), and Platelet count. With bone marrow failure, all of her counts have been at various levels of "low", but since conditioning, Kailee can no longer make any cells on her own. She has zero white blood cells, and therefore, no ability to fight bacterial, fungal or viral infections. Her marrow can no longer make any red cells or platelets, but those she receives by way of blood transfusions. Once the new marrow is transplanted, with time, the new seed cells should sprout and the garden should take off.

    For now, we wait with hopeful anticipation of tomorrow's new beginning.

    Love & Blessings - Linda and Owen

    P.S On December 8th, the Milwaukee Journal Sentinel published a thoughtful story on Kailee's long road. You may want to read it on line at: http://www.jsonline.com/news/metro/dec04/282116.asp

    Saturday, January 22, 2005

    Dear Ones -

    Kailee is now at "day -3." In the world of transplant, each day is identified by counting down from the day conditioning starts, usually chemotherapy and radiation, to day "zero," the day of transplant. Each day after transplant is identified as a positive numbered day. Kailee was admitted on Tuesday, day -7, so today, Saturday, is day -3.

    Dr. Margolis and his team have done such a great job developing the perfect "recipe" for Kailee, that considering all the chemicals pumped into her, she has tolerated it.

    She has had a fairly steady regimen of eight different infusions running all of the time...even nine lines at once. If you can imagine four central access lines branching out into two or three each. The nursing staff that administers all of this stuff is truly Aaaamazing.

    This is Kailee's last day of chemotherapy (it should be done about 7 am Sunday morning) ... and what a trooper she has been! At various times, she has had bone pain, bladder pain, headache, fever, itching, throat pain, tongue pain, you name it. A couple of times she has experienced abject misery, but Kailee's ability to have some control with her own morphine button at her side, in addition to her pure determination to get rid of what she calls her "stupid aplastic anemia" is getting her through.

    Sleep has been an issue, but we are trying to keep her days and nights regulated. Typically, something has to be done every hour 'round the clock...vital signs vary from every 15 minutes when transfusions begin, to every hour during various i.v. drips... there are a variety of oral medications she takes, oral care for mouth/throat sores from chemo, hourly potty trips from all the fluids, physical therapy, nursing assessments, medical residents assessments, attending doctor assessment, and 4:00 am blood draws for lab work. All of this, in addition to one or more of the eight or nine I.V. pumps "beeping" twenty-four hours a day is a lot.

    She has reminded us several times that day -2 is a "REST" day, and God help the person who forgets it.

    Love Linda and Owen

    Wednesday, January 19, 2005

    First day of the Big Guns several Chemo drugs as well as a variety of others to protect her liver, bladder, kidney and other vital organs. It has been a tough day with all the new drugs. Kailee responded with a whopping fever of 104F that required an increase in steroids and a continuous morphine drip. She now has her own button that she can push to administer her own morphine!

    Sincerely, Owen and Linda Wells

    Tuesday, January 18, 2005

    Dear Family and Friends-

    It is difficult to believe that three years ago today Kailee was first diagnosed with severe Aplastic Anemia, bone marrow failure. This morning, bright and early, we came to Childrens Hospital in Milwaukee, WI to begin her conditioning /chemotherapy for bone marrow transplant next Tuesday, January 25, 2005. We know it has been a long time since we have updated www.KaileegetWells.com, but we have been dedicated to giving Kailee as many normal, little girl experiences as possible. Spending time with family learning to ride her bicycle, having a girl sleepover, a tea party, riding her scooter, making a snow angel and going to movies, have made our time together special.

    Now, Kailee is ready for the big battle. Today, her doctors placed another I.V. catheter in a vein to her heart so that she now has four central lines for intravenous medications and transfusions. She did well through the general anesthesia and the conditioning regimen for transplant has already started. Over the past three years we have been continuously blessed with families and friends, both old and new checking in on Kailee regularly. While Kailee continues through the transplant process, we will try our best to provide updates through this website.


    Photos from Wisconsin!

    World Bone Marrow Donor Drive
    World Bone Marrow Donor Drive Photos!

    Click below to download a flyer to use for Bone Marrow Donor Drives in your area!

    High Resolution Flyer

    Dear Friends

    First, please read the article on Saturday, 5/29/04 in the www.nytimes.com on Cord Blood. Type in Kailee Wells for the search to read the article.

    Second, I have since learned that the University of Illinois and the St. Jude's Hospital in Peoria, Il were instrumental in getting Illinois to pass a recent law that covers the costs of umbilicol cord blood donation in Illinois. Contact Peggy Mankin, email-pem@uic.edu for more info. with St. Jude's. Only problem: The law does not provide for funding. Imagine if the 4,000,000 US births all donated their cord blood to NMDP, cord blood banks and the registries. Think how fast the registries, now at about 8,500,000 world wide would grow. It has taken 18 plus years to get 8,500,000 into the registries. 30,000 new cases are diagnosed each year with 70 different illnesses and 70% of those must go to the registries to try to find a match of bone marrow donation or cord blood donation.

    Most or roughly 20,000 US citizens will die without finding a match. 30% are lucky enough to find a family member bone marrow match. The registries find some matches at NMDP and cord blood banks, however the number is small compared to the need. Contact NMDP for more info. Please help encourage your local law makers, doctors, medical schools and hospitals to introduce their own laws to allow all umbilical cords to be donated to the registries at no costs to the babies families so we may save many more lives and, if we are extremely fortunate, our own sweet little Kailee.

    Kailee update: She received another transfusion of platelets on Monday. Her counts are such that she is likely to need a transfusion of Red Blood Cells this week. We have decided to take Kailee off of all of her chemo and medications so that her body can cleanze itself and her organs, hopefully, will strengthen in the hopes of her being able to survive an upcoming transplant in late summer as recommended by her doctors. They want us to proceed with a transplant before she is too weak to have a chance to survive it at all. We want to hold off before we pull that life or death trigger until we can find a better match. Her current odds are about 20 to 25% chance of survival with the present 8 out of 10 poor match that we now have. We are also pulling out all the plugs to give her quality of life by letting her do more things so she will be happy for her last few months of life or as is our goal for her to want to fight like hell to live and survive the horrible pain of graft vs. host disease, infections, etc. and live to be 80 years old!

    On that note: When she was freshly pumped up with plalets, she and Daddy went on a short bicycle ride to a play ground. She had a great time. Mommy and Dadddy just recently were able to teach her to ride a bike. I ran down the street on one side. Linda ran down the street on the other side of Kailee. Kailee wore a helmet and far more clothing than required for the weather in case she took a spill. She must not be allowed to hemmorhage or it could take her to heaven before her time.

    Sincerely, Owen Wells, Daddy of Kailee

    Los Angeles Area Bone Marrow Donor Drives
    Scheduled for April 24th and 25th
    Drive Organized to Help Young Chinese Girl with Aplastic Anemia

    For Immediate Release

    Contacts: Owen Wells, Kailees father, (505) 260-1600, (505) 239-2361
    e-mail: owendwells@aol.com
    Debbie Mueller, (505) 856-1825

    Albuquerque, N.M. - On Saturday April 24th and Sunday April 25th Southern Californians will have the chance to give the gift of life to a young Chinese American girl and more than 30,000 new American cases each year like her. The marrow drives will occur at two 99 Ranch Market locations - 140 W. Valley Road in San Gabriel and 17713 Pioneer Blvd. in Artesia - from 11 a.m. to 4 p.m..

    This marrow drive, organized by the Asian American Donor Program and the National Marrow Donor Program (NMDP), will help Kailee, a bright-eyed, loving 7-year-old girl, adopted from China, Jian Yu -- and many more like her with aplastic anemia, leukemia and approximately 70 other life threatening diseases who are in need of a life-saving bone marrow donor transplant. Volunteers are needed to distribute flyers announcing the event and to help facilitate the drive.

    The Wells family has coordinated national and international events to raise the general awareness of the life saving benefits of bone marrow donation. Though we would be overwhelmed with joy by the possibility of finding a donor for our little girl, the need for bone marrow donors has opened our eyes. If our efforts can help save one persons life, this will be worth it, said Linda Wells.

    In January of 2002, Kailee hemorrhaged for five hours through nose, eyes and mouth. The doctors in her intensive care unit said she lost half of her blood. They diagnosed Kailee with aplastic anemia, a rare blood disease from unexplained failure of bone marrow to produce blood cells. To extend her life, she has received extensive chemotherapy and blood transfusions at the Childrens Hospital of Milwaukee. Described by one doctor as a walking time bomb, she is very vulnerable to fatal infection and hemorrhages.

    Kailee, like many people with blood diseases, could die within months if she does not find an exact match bone marrow donor. A patients most likely marrow match is a sibling. Because she is adopted, Kailee does not have a marrow match from her birth family. Kailee must find an unrelated match donor, most likely from the same ethnic background.

    Signing up for the national registry is simple. Registrants complete a short form and have a simple blood test. Donors should be in good health and between ages 18 and 60. If registrants are fortunate enough to be a match, there are two possible medical procedures to donate your marrow both allow the marrow to replenish within the donors system within two to four weeks. Registration is free for persons of ethnic minority ancestry including persons of Asian, Latino/Hispanic, American Indian and Alaskan Natives, Native Hawaiians and Other Pacific Islanders, and Black and African ancestry. Caucasians may be asked to contribute to the cost of tissue typing to join the Registry.

    Kailees mother, Linda Wells, traveled to China twice in 2003 with hopes of finding a match for Kailee and to spread the message to the Chinese about registering for bone marrow donation. She succeeded in creating significant awareness that resulted in tens of thousands of Chinese being tested and becoming registry donors. The Wells story has been told in venues throughout the world including Parents Magazine (Nov. 2002), CNN, German television (Pro Sieben), and the South China Morning Post. (MSN Search Kailee Wells, www.scmp.com ).

    In the marrow search, the Wells have made a significant addition to the international bone marrow registry. In Albuquerque, N.M., a donor drive set a 10 year record for United Blood Services with 543 donors. A nationwide drive with the Red Cross Society of China in February, 2003, created 53,000 new donors and a World Donor Drive in November, 2003, added an additional 50,000 donor registrations. Matches were found for a 15-year-old girl, who has a successful transplant, and one for an 8-year-old girl, awaiting her transplant now. Another match was announced at the Santa Fe NM drive in February, 2004. .

    For information on the Los Angeles bone marrow drive, contact Sharon Sugiyama at the Asians for Miracle Matches at (213) 473-1660 or www.AsianMarrow.org . For more information on Kailee and her family, visit her website at www.KaileegetWells.com .

    ###

    Owen Wells is available for live interviews or for a telephone interview. The Wells also have beta tape and photographs available for news story footage. Please contact Owen Wells at (505) 260- 1600 or cell (505) 239-2361 to set up an interview or for further information.

    Northern California Bone Marrow Donor Drive
    Scheduled for March 28th
    Drive Organized to Help Young Chinese Girl with Aplastic Anemia

    For Immediate Release

    Contacts: Owen Wells, Kailees father, (505) 260-1600, (505) 239-2361
    e-mail: owendwells@aol.com
    Debbie Mueller, (505) 856-1825

    Albuquerque, N.M. On Sunday, March 28th, Northern Californians will have the chance to give the gift of life to a young Chinese American girl and more than 3,000 Americans like her. The marrow drive will occur at the Tzu Chi Health Fair, at 175 Dempsey Road in Milpitas, CA, from 1 pm to 4 pm.

    This marrow drive, organized by the Asian American Donor Program and the National Marrow Donor Program (NMDP), will help Kailee, a bright-eyed, loving 7-year-old girl, adopted from China -- and more than 3,000 Americans like her with aplastic anemia, leukemia and approximately 70 other life threatening diseases who are in need of a life-saving bone marrow donor transplant. Volunteers are needed to distribute flyers announcing the event and to help facilitate the drive at the Tzu Chi Fair.

    The Wells family has coordinated national and international events to raise the general awareness of the life saving benefits of bone marrow donation. Though we would be overwhelmed with joy by the possibility of finding a donor for our little girl, the need for bone marrow donors has opened our eyes. If our efforts can help save one persons life, this will be worth it, said Linda Wells.

    In January of 2002, Kailees hemorrhaged for five hours through nose, eyes and mouth. The doctors in her intensive care unit said she lost half of her blood. They diagnosed Kailee with aplastic anemia, a rare blood disease from unexplained failure of bone marrow to produce blood cells. To extend her life, she has received extensive chemotherapy and blood transfusions at the Childrens Hospital of Milwaukee. Described by one doctor as a walking time bomb, she is very vulnerable to fatal infection and hemorrhages.

    Kailee, like many people with blood diseases, could die within months if she does not find an exact match bone marrow donor. A patients most likely marrow match is a sibling. Because she is adopted, Kailee does not have a marrow match from her birth family. Kailee must find an unrelated match donor, most likely from the same ethnic background.

    Signing up for the national registry is simple. Registrants complete a short form and have a simple finger prick blood test. Donors should be in good health and between ages 18 and 60. If registrants are fortunate enough to be a match, there are two possible medical procedures to donate your marrow both allow the marrow to replenish within the donors system within two to four weeks. Registration is free for persons of ethnic minority ancestry including persons of Asian, Latino/Hispanic, American Indian and Alaskan Natives, Native Hawaiians and Other Pacific Islanders, and Black and African ancestry. Caucasians may be asked to contribute to the cost of tissue typing to join the Registry.

    Kailees mother, Linda Wells, traveled to China twice in 2003 with hopes of finding a match for Kailee and to spread the message to the Chinese about registering for bone marrow donation. She succeeded in creating significant awareness that resulted in tens of thousands of Chinese being tested and becoming registry donors. The Wells story has been told in venues throughout the world including Parents Magazine (Nov. 2002), CNN, German television (Pro Sieben), and the South China Morning Post. (MSN Search Kailee Wells, www.scmp.com).

    In the marrow search, the Wells have made a significant addition to the international bone marrow registry. In Albuquerque, N.M., a Mothers Day donor drive set a 10 year record for United Blood Services with 543 donors. A nationwide drive with the Red Cross Society of China in February, 2003, created 53,000 new donors and a World Donor Drive in November, 2003, added an additional 50,000 donor registrations. Matches were found for a 15-year-old girl, who has a successful transplant, and one for an 8-year-old girl, awaiting her transplant now. Another match was announced at the Santa Fe NM drive in February, 2004.

    For information on the Tzu Chi bone marrow drive, contact Carol Gillespie at the Asian American Donor Program at (510) 568-4500 (www.aadp.org 1-800-59-DONOR). For more information on Kailee and her family, visit her website at www.KaileegetWells.com.

    ###

    Owen Wells is available for live interviews or for a telephone interview. The Wells also have beta tape and photographs available for news story footage. Please contact Owen Wells at (505) 260- 1600 or cell (505) 239-2361 to set up an interview or for further information.

    February 11, 2004

    Santa Fe Bone Marrow Donor Drive - Help us save Kailee and others like her -

    My name is Owen Wells, Daddy of Kailee, 7, who has Aplastic Anemia, bone marrow failure. General George Patton said Lead, follow or get the hell out of the way. Senator Joe Carraro is strongly demonstrating his leadership and is already tested to be a donor. Please lead as he has by taking action today. Last Friday, Governor Bill Richardson addressed this assembly to promote National Donor Month in New Mexico and encouraged our efforts. My wife, Linda and I are a team who love our little girl and we are fighting to keep her alive so she can lead a normal, healthy life like any good parents desire for their children. I am fortunate to address the NM State Senate today. Respectfully I am asking for your help in saving our sweet little Kailee and others like her. My family, with assistance of many wonderful people, has helped organized bone marrow donor drives throughout the world.

    Confucius once said every journey begins with a first step. More recently, we hear, It takes a village. Our journey to save Kailee began two years ago and we still have not found a perfect match with enough cellular volume. Please encourage a great many villages to join us in promoting the international need for bone marrow donors.

    Someone once said that Kailee was brought into this world to teach us to love. I love her with all my heart. I believe her beautiful face and sad story are necessary to motivate people. We try to protect her from as much public attention as we can. All Kailee wants is to be all better, to be rid of her stupid Aplastic Anemia. We need the media to save our child so sharing our private lives is a price we pay. That access is especially hard for Linda. She had to quit her law practice and now her job 24/7 is the most important job in the world, caring for Kailee. Since she hemorrhaged in December, Kailee is too fragile and must be close to Dr. David Margolis at the Childrens Hospital in Milwaukee, WI, one of the three specialists in the world that know her rare illness. The last two years have been stressful and challenging, trying to make a living, wanting to be with Linda and Kailee, and believing that we must do donor drives to save our child.

    Our family has been forever transformed in every conceivable way. Take time to tell people close to you how much you love them. We have learned how very special life is and live every hour petrified that the good lord will take our little Kailee to heaven. Fortunately, at least today, Kailee is still with us and we live every single day loving her and appreciating the time we now have.

    So many loving, compassionate, generous people have been there for us. I must say thank you to all the wonderful people around our world who have been there for our family.

    Ralph Waldo Emerson put success into perspective with these words: Success. To win the respect of intelligent people and the affection of honest critics and to leave the world a bit better whether by a healthy child, to know even one life has breathed easier because you have lived. This is to have succeeded. Succeed we will. As of November, 2003, we know of close to 60,000 bone marrow donors added to the Registry. That success means we will save many lives! Saving lives gives my aching heart some happiness and keeps me focused!

    We need you, the NM State Senate, to share our story. On Saturday, February 21st we are hosting the Santa Fe Donor Drive at the La Fonda from 10:00 am to 5:00 pm. This donor drive is sponsored by the La Fonda Hotel, First State Bank, Wells Fargo, and the National Marrow Donor Program. The events of the day include an auction and a bone marrow donor drive.

    One person can make a difference. Our first drive has already found two perfect matches! One for a 15-year-old girl, who is doing well after her recent transplant. Another for an 8-year-old girl who has yet to have her transplant. Our familys mission to save as many lives as we can.

    Several months ago, our doctors told us that Kailee may have one month to live. She may have one year. Seattles Fred Hutch Medical Director, Gene Sanders called Kailee a walking time bomb. She will die of an infection we cannot cure or of a hemorrhage we cannot stop! We take life one day at a time and cherish every day that she is with us. I pray to God that Kailee has the time we need to find her a perfect match. She has a 50% chance of survival if we find that elusive match.

    Between hospital stays, Kailee had her seventh birthday on January 4. She wanted pink frosting, her favorite color, on a chocolate cake. As they were baking her cake together, Kailee said Mommy, I am going to miss you when I die. Mommy gulped and had the presence of mind to say, Sweetheart, mommies usually die before their little girls and I will miss you terribly.

    Kailee gets her blood tested on Tuesdays and Fridays from a catheter permanently placed in her heart. Yesterday she needed more transfusions of platelets and red blood cells. Additional transfusions mean a lesser chance of a bone marrow transplant succeeding. We must find the perfect match quickly if we are to save Kailees life. A few days ago she fainted in the shower and fell. Fortunately, Mommy caught her and she was not hurt. The fainting really scared us! Our doctors say it was partially caused by too few red blood cells transporting oxygen in her body.

    Healthy adults, aged 18 to 60, may become bone marrow donor volunteers. Fill out the Registry form and get a simple blood test. Depending on available funding, sometimes donor volunteers pay a fee of $25 to $96. Thanks to First State Bank, Wells Fargo and NMDP donor volunteers should not be charged a fee at the Santa Fe Donor Drive.

    In the United States there are 3,000 people who will likely die without a transplant. There are 70 diseases that benefit from bone marrow donors. The Registries have 8,500,000 donor volunteers. We are especially seeking minorities, because they are the least well represented. Asians are more likely to help Kailee, although anyone could become a match for our daughter. If you are lucky enough to match someone (the odds are as bad as one million to one), you provide another blood test. If it could match Kailee, this high resolution HLA typing costs our family $3000. Should you become a donor, Blood will be taken from one arm, the stem cells are harvested and the remainder of your blood is returned to your other arm. Your body will replenish the marrow within two to four weeks. This effort is a small price to pay to save a persons life!

    Albert Einstein, when asked what he thought was important, said simply, To help one another. What help or action am I seeking today? First, help our family and others with donor drives in Santa Fe and beyond by getting involved in promoting, staffing and funding each drive. We want to save lives and if we are very fortunate, our sweet Kailee. Second, pass legislation, so no person will die because funding was unavailable for testing, regardless of ethnicity, or people had to buy groceries instead of becoming donors. Third, pass legislation funding high resolution HLA typing so all families like ours can pay for the testing required to find bone marrow matches to save their loved ones life. Congresswoman Heather Wilson has met with me and is working to include the two funding provisions in HR 3034, the National Donor Registry Reauthorization Act, currently before the U. S. Senate, and to make the NMDP easier for families to work with. Personally, I would urge one additional provision: The National Marrow Donor Program should be required to do at least annual national drives with their existing funding. Aside from the Mothers Day Drive that our family organized, the National Marrow Donor Program has never done a single national drive! Think of all the children who could be given the Gift of Life, maybe even someone you love or our sweet Kailee.

    Last, come with me today and become bone marrow donor volunteers. Fae Jones with NMDP and Debbie Mueller, my able assistant, are here with me to help you. Please sign up in the Rotunda Southwest Alcove in the West Halls of History, from now until 2 pm. We ask you to come two at a time so you can continue to conduct your normal business. I will answer any questions that you may have at this time.

    Please help us save Kailee and others like her!

    Sincerely, Owen Wells, Daddy of Kailee

    January 19th

    My name is Owen Wells, Daddy of adopted Kailee Wells, 7, who has Very Severe Aplastic Anemia, Bone Marrow Failure. My family, with assistance of many wonderful people has helped organized Bone Marrow Donor Drives. In Albuquerque, NM, 3/02, where we set a ten year record for United Blood Services - 543 donors, a nationwide drive in America on Mothers Day Weekend with NMDP 5/03, a nationwide drive with the Red Cross of Society of China, 2/03, that ultimately brought in 53,000 new donors, and a World Donor Drive 11/03, results not yet known. One person can make a difference. Our first drive has already found two perfect matches!!! One for a 15-year-old girl, who had a transplant in November and is doing well. One for an 8-year-old girl who has not yet had her transplant. This is our Familys Mission to Save As Many Lives As We Possibly Can and if we are extremely fortunate our precious Kailee.

    Several months ago, our doctors told us that Kailee may have one month to live, she may have one year. The Medical Director, Jean Sanders, at Seattles Fred Hutchinson Bone Marrow Transplant Center called Kailee a Walking Time Bomb. She will die of an infection we cannot cure or of a hemorrhage we cannot stop! We take life one day at a time and cherish every day that she is with us.

    Between hospital stays, Kailee had her seventh birthday on January 4. She wanted pink frosting on a chocolate cake. Pink is her favorite color. As they were baking her cake together, Kailee said Mommy, I am going to miss you when I die. Mommy gulped and had the presence of mind to say, Sweetheart, Mommies usually die before their little girls and I will miss you terribly.

    A Bone Marrow Donor Drive will be taking place on Saturday, January 31, 2004, from 5 to 7 pm at the E Center in Salt Lake City, Utah. The Utah Grizzlies Hockey Club is working with the Heart of America Donor Center and the National Marrow Donor Program. Sponsors include Altius Health Plans and Iasis Healthcare. To become a Bone Marrow Donor go to the E Center, 3200 S. Decker Lake Drive, First Floor, Will Call Entrance, Salt Lake Meeting Room, West Valley City, Utah 84119 on 1/31/04, 5 to 7 pm.

    Healthy Adults, aged 18 to 60, may become Bone Marrow Donor Volunteers. Fill out the National Registry form and get a finger prick for a few drops of blood. If you are fortunate enough to become a donor, then you will be given anesthesia and marrow will be removed from your pelvis via a syringe. Your bottom will be sore for a few days and your body will replenish the marrow within two to four weeks. In the United States there are 3,000 people who will likely die without a transplant. There are 70 diseases that benefit from Bone Marrow Donors. The NMDP has 8,500,000 people in the National Registry. We are especially seeking minorities, because they are the least well represented in the National Registry. Asians are more likely to help Kailee, although anyone could become a match for our daughter, just the odds are much lower.

    Sincerely, Owen Wells, Daddy of Kailee

    Click here to download a flyer about the Utah Grizzleys and their help!

    January 11th

    Dear Family & Friends -

    I took Kailee to the Hot Unit yesterday and she did indeed receive a platelet transfusion. Her count was essentially the same as Friday, but for some reason she developed this new problem. It goes to prove what Dr. Margolis told us before...kids bleed at different times with differing platelet counts. Kailee has had a fairly serious bleed when her platelet count was 29, and no bleeding when her count was 7.

    A good thing that came from having to go to the hospital today is that we had a chance to visit another family from out of town who also brought their daughter here to Dr. Margolis for treatment of her severe aplastic anemia. This little girl had been misdiagnosed for many months in her local medical community. Thankfully, her parents kept researching and researching. They put together infomation from Dr. Neil Young at NIH with information from Kailee's and Kinsey's website and decided to get in touch with Dr. Margolis. As with us, Dr. Margolis was wonderful with them. They immediately scheduled a consultation here in Milwaukee, but when their daughter suddenly developed a whopping fungal infection they called Dr. Margolis, and he immediatley organized the hospital plane to go get her.

    This little girl and her Mom have been here since early December and her Dad has had to come and go for his work, just as Owen does. They are beginning her radiation and chemotherapy conditioning regimen this Tuesday for transplant next week. Apparently, like Kailee, this child cannot find a good stem cell match, so her Dad will be her donor. It's called a "haplo" transplant... a parent is a half match to their child.

    Meeting this family reinforces my regard for Dr. Margolis' work with aplastic anemia. It also demonstrates why there are so few answers for Kailee. We are always trying to get Dr. Margolis to tell us what will happen, what to expect next, what we should do, what does this, that, or the other thing MEAN? Patiently, he tells us what he can, but often tells us he doesn't have the answers we want because aplastic anemia is a very rare disease and everyone that has it, experiences it differently.

    Meeting the other families shows us how true that is. Some children have lots of infections, some have bruises and blood blisters, some have liver problems from the medications, some have frank bleeding, some have combination of all of the above. And, we cant's forget the varying degrees of childhood depression and behavioral issues.

    A real eye-opener for me today is this...if everyone experiences severe aplastic anemia so differently, and being that there are relatively few cases, how reliable can the statistics be? Too often, I focus on whether Kailee has a 10% chance of making it through a transplant or whether it's 20% or 30% or whatever. Dr. Margolis said it before, but I didn't really get it until today. Kailee will either live or she will die. For her, it's either 100% or it's zero. But for today, she is 100% here and for that we are blessed.

    Love - Linda

    January 10th

    Dear Ones -

    I want to share with you what some of days are like here. Yesterday, for example. Kailee is nearly impossible to getting going in the morning. It's not because she stays up too late, she just likes to move verrry slooowly in the morning. Maybe it just runs in families, because if memory serves me, her big sister Taunya was (dare I say "is") the same.

    Anyway, by the time we get to the hospital, it is usually mid-morning and every single parking place has been taken. Usually a few laps up, down, around, and through the multi-level parking structure eventually turns up something. By that time, however, I have been treated to several arias of "Mommy, I Am Gonna Throw Up" and "I'm Getting Sick Back Here!", but I calmly assure her that she can hold on for just a few more twirls up and down the ramps.

    Once we get out of the car and make sure Kailee is bundled up (did I mention the snow and temperatures here- often below zero with a wind chill of minus 20) we begin the journey through the "skywalk." Kailee loves it when she is feeling well, when not, she has to stop and take breaks along the way. When we get into the hospital itself, we stop at the volunteer's desk for an ID badge, then check in with Patty at the 8 East clinic where Kailee gets her arm band. Her infusion nurse, Heather, takes blood from Kailee's central line and sends it off to the lab. Kailee, runs off to see Ms. Urna who checks her O2 saturation, blood pressure, temperature, height and weight. Some days, when Ms. Edie is there to do wonderful craft projects with the children, Kailee has fun in her room while we wait for the lab results. Eventually, we get a room assigned, and either the Nurse Practitioner, Lynette, or Dr. Margolis examines Kailee. They review her counts with me and decide what treatment she should have for the day, what medicines should be adjusted, and when we should come back.

    One of the best things about Children's Hospital of Wisconsin is the wonderful team effort of the staff and how they include the parents as an important part of the team. Each person knows Kailee, what's currently going on with her, how she is doing, how we are doing. They regularly greet us with something like "You didn't have to come in over the weekend - that's great!" or "How's the unpacking coming? " or "Kailee, how are those nephews and neice of yours?" And it's not just us, we can see they are the same with the other children and families...the entire 8 East clinic staff and HOT Unit (hemotology, oncology, transplant inpatient unit) really care about their patient's and families as individuals.

    Anyway, as for yesterday, along with the medical things going on, the social worker, Sheila, stopped by to update me on her efforts to arrange home-bound schooling for Kailee, and one of the psychologists, Dr. Kristin checked in to arrange for Kailee to work with one of them on a regular basis. One of the hospital chaplains, Jim, referred to me by the Palliative Care Program, visited with me while Kailee was getting her infusion of Zenapax. We had not met before, and I expected flowing robes and lots of "thees" and "thous", but I was wrong. What a great person to talk to about the meaning of life and the deeper spiritual (not religious) aspects of our life. Just a few minutes after our meeting, Kailee and I ran into Jim, dressed like a football referee playing with the kids at a Packers party on the HOT Unit.

    I asked Dr. Margolis just who the "Packers" are - basketball? football? what?? In true "Cheesehead" form, he said I should go home to New Mexico.

    As I write this update, Kailee just came to me and showed me blood blisters in her mouth. That's new! It's Saturday, so I will call the HOT Unit to see whether it's something new to worry about.......

    Later Saturday.... Well, the Hot Unit staff talked to Dr. Margolis and he wants me to bring Kailee to the hospital now. Apparently, blood blisters in her mouth are considered "new bleeding" and he wants her to have a platelet transfusion today. So...more when I can.

    Love & Blessings -

    Linda

    January 9, 2003

    Dear Family & Friends -

    Once again, it seems like ages since I was last able to update you on what has been happening in Kailee's life. As you probably know, I returned from Asia and our world bone marrow donor drive on December 2nd because of the sudden change in Kailee's health. On December 5th, Kailee and I were on our way to Milwaukee for Kailee's continuing medical care by Dr. David Margolis and the bone marrow transplant team at Children's Hospital of Wisconsin. It immediatley became clear that for Dr. Margolis to attend to Kailee's ongoing medical needs, she would need to stay in the Milwaukee area.

    Initially, Kailee and I stayed in a hotel and came to the hospital just about every other day where she received a bone marrow biopsy, a transfusion of blood products, an infusion of one drug or another for low blood counts, an inhalation of an anti-lung-infection drug, and a resumption of the research chemotherapy (Zenapax) that she received throughout the Summer at the National Institute of Health.

    Soon after the results of the biopsy came back, we met with Dr. Margolis, the Nurse Practicioner, and the Bone Marrow Transplant Coordinator to review and discuss Kailee's treatment options.

    All of the medical people Owen and I have consulted remain in agreement that Kailee needs a bone marrow transplant to be cured of her Aplastic Anemia. It is now nearly two years since she was first diagnosed with severe Aplastic Anemia and none of the non-transplant alternative treatments of "immune-suppression" have done the job. Although she has enjoyed periodic, temporary improvements, her disease is the same as it was at diagnosis. The difference is that now we know what she has, we check her blood counts regularly, and we treat her as often as symptoms require. (Dr. Margolis has taught us about treating the patient, not the lab numbers, but when her platelets are 14,000 and the normal is 150,000-350,000, it's a set-up for constant worry.)

    Not all of the medical people agree on when to do the transplant, however. The problem is that we have yet to find a good donor match.

    The cord matches in China are good matches, i.e. 5:6 and 6:6 but neither have sufficient cell dose. The cords with good cell dose are not good matches, i.e. 4:6, and the marrow matches are only 8:10 match at best. Some doctors believe Kailee should be transplanted now, with what's available now, before she gets an overwhelming infection or an uncontrollable bleed. We, however, agree with Dr. Margolis to hold off as long as possible hoping for a better match. Of course, that decision can change anytime, anyday. In the meantime, everyone remains vigilant, adjusting her treatment as necessary.

    Regarding the cords we located in China and the opinions in China that they are of sufficient volume, we now understand a bit better the reasons Dr. Margolis has a different opinion. As I understand it, while either cord is "doable", particularly for other diseases such as leukemia, transplant success in aplastic anemia kids require more transplant material to "take" so to speak. Kailee would have a better chance with a mismatch with lots of cells, than with not enough cells of a perfect match.

    The biggest concern for doing the transplant with what is currently available is the certainty of Kailee developing "graft vs. host" disease. The greater the mismatch between Kailee and the transplanted marrow, the more severe the "GVHD" will be.

    We learned recently that GVHD can attack three systems of the body: skin, digestive system, and liver. The extent of the attack varies from fairly mild with a closely matched transplant to varying degrees of horrible with mismatches. So, essentially, transplanting Kailee with the currently available donors will result in her trading one serious disease for another.

    On an informative note, we learned recently that GVHD in stem cell transplant differs from that in transplant of solid organs like heart and kidney in that in solid organ transplant the patient's body recognizes the new organ as a foreign invader and attacks it, but in stem cell transplant, the stem cells see the patient's body as foreign and attack it.

    On a happier note, we are so fortunate that with the help of family, neighbors, and friends, Owen packed up much of our furniture and belongings, and then brought it all to Milwaukee. Owen drove a moving truck across the country, by himself, and brought my car too. Kailee and I spent our free time looking for a place to live, and by the time Owen got here on December 22, we were ready to move into a home we are now renting.

    We are happy here, making it our home, and although it is not close to Children's Hospital, we can look out our front window and see another medical facility nearby, should we have an urgent need.

    We are currently at the hospital, and Kailee is finishing with her hour at "Hospital School," so I will stop now too. I have so much more info to share, I will do my best to continue soon.

    Love & Blessings -

    Linda

    December 7, 2003

    Dear Ones -

    It has been five days since my last update, and what a five days it has been. On Tuesday morning, I awoke in my hotel room in Incheon, South Korea to a telephone call from my daughter-in-law, Jessicca, telling me Owen had taken Kailee to the emergency room because of a bloody nose. This was the first episode of bleeding since early in her diagnosis of severe aplastic anemia. Minutes after the call fromJess, Kailee's doctor called to give me details.

    Kailee had uncontrolled bleeding for four hours and required a transfusion of platelets to stop the blood loss. More importantly, this sudden onset of bleeding, along with her seriously declining blood counts, indicated a significant increase in the severity of her disease that would require new treatment, and soon.

    Within thirty minutes, I checked out of the hotel and returned to the airport to find the fastest flight home. From the first call to landing in Albuquerque, 24 hours of fear and dread elapsed. I say "fear and dread," but I also had time to contemplate the futility of those emotions and to actively work on acceptance of what is and what might be.

    About the time I returned home, Owen was bringing Kailee home from the hospital after spending just about 24 hours there. The platelet transfusion stopped the bleeding, and doctors wanted her out of the hospital as soon as possible. The flu has hit Albuquerque hard, causing the death of one three-year-old child and suspected as the cause of death of two other children in the same week.

    Kailee was pale and tired but otherwise o'k. The next morning, however, Kailee awoke with a headache, was quite pale, and complained of being dizzy when she moved around. We took a blood sample out of Kailee's central line and to the hospital for analysis. When the results came back, we knew the reason for her symptoms...her red blood cell count and hemoglobin had dropped big time because of her blood loss. At the doctors' direction, Kailee was readmitted to the hospital and received a transfusion of red blood cells as well as a drug to increase her marrow's production of white cells. By the next day, she looked much better. We took her home and made arrangements to take Kailee to Children's Hospital in Milwaukee, Wisconsin the next day. We arrived here Friday evening.

    Yesterday, Saturday, Kailee and I saw Dr. Margolis. What a relief to be with and near her doctor. Our confidence in him and his team is unshakable. If you have to deal with this, you sure want to be where you know you will have the best care available, and we know that everything that can be done for Kailee will be done by this team!

    Not surprisingly, Kailee's counts are declining since the transfusions, but for now, she is not symptomatic. The plan is that Dr. M. will do a bone marrow biopsy on Tuesday. The biopsy (Kailee's 9th I think-under general anesthesia) should give us an idea whether we have any time to continue the search for a better marrow match, or whether we have to move to transplant now with a less than ideal donor. In the meantime, we will meet to carefully review each of the treatment options available as well as the various potential marrow and cord donors.

    Whatever decision needs to be made, it looks pretty clear that Kailee and I will be living in Milwaukee for an extended period of time. I have started to look for a place to live, but boy is that tough. Our family is not here, and every place we look at Kailee says "Nope...not without Daddy...I am NOT going to live here." It's sad that Kailee cannot have her Daddy with us during much of this, but he has to keep at least some income coming, while he continues do everything he can to help us from home.

    Kailee wants to stay at Ronald McDonald House as we did in Bethesda because I think it seems more temporary to her...and there are other kids there...but I don't know that we could stay there as long (months) as this is going to take. I think it will be best to find some place to call home...I know I am a nester.

    Now that we are here in Milwaukee and hope to get out of this hotel and settled somewhere soon, I plan to work on making our home as "Christmasy" as possible. Little kids don't need much anyway, just a place to bake cookies, decorate a tree, and be with family and friends, even if only in their minds and hearts.

    Love & Blessings - Linda

    December 1st

    I awoke this morning to a telephone call from home telling me our sweet little Kailee has been admitted to the hospital for sudden bleeding.

    I am out the door, leaving Korea on the next flight out for home.

    Love - Linda

    November 30th

    Dear Ones -

    You may want to know that Monday morning, The CBS Early Morning Show will have a story on Kailee and our global effort for others searching for a marrow match, scheduled for 7:33 am MST.

    Leaving Taipei for Korea now. More Later.

    Love & Blessings - Linda

    November 29th

    Dear Ones -

    Before I totally fail to update you on the World Donor Drive, I think its time to just stop what I am doing and let you know what has been going on. A glimpse of the last 2 days looks like this:

    Friday morning in Hong Kong, get up at 5:00 am, pack for the airport, check emails, telephone Albuquerque and talk to family who are eating Thanksgiving Dinner, check out if hotel, catch a taxi to the train, take the train to Hong Kong airport, take another train to the plane, board second before takeoff, eat on the plane, clean out my purse, clean out my briefcase, land in Taipei, take a one-hour bus ride to the city, get a taxi to the hotel, get to my room, hook up computer to broadband, check emails, send emails both local and to future destinations, answer telephone calls, rush out the door, get directions in Chinese for taxi to National Taiwan University Hospital, conference with Dr. Lin Kai Hsin, Department Head of Pediatric Hemotology, Oncology, Bone Marrow Transplant and Dr. Aaron Chou, Medical Director of StemCyte Inc. bone marrow bank, discuss Kailees specifics then Taiwan bone marrow and cord blood donor programs, get taxi back to hotel, read/answer/send emails, dinner at my desk, bedtime.

    Saturday morning in Taipei, get up at 5:00 and read/answer/send emails, downstairs for a real breakfast buffet, telephone TzuChi marrow program in Hualien, Taiwan, arrange visit for tomorrow, run down to travel desk, get ticket for Hualien on FAT Airlines which is a good thing with the earlier banquets and now the buffet breakfasts, call TzuChi with flight arrangements, draft local Press Release and fax to Taiwan Times, Taiwan News, Taiwan Herald Tribune, and Taiwan Journal, draft and fax letters to Singapore and Korea, email letter to Japan, take a short walk around the block and photograph the luncheonette choices (for those of you who doubt my earlier cuisine discussions, please note photo of people checking out menu choices in window of place with puppy on sign), enjoy a diet coke for lunch and back to work at my desk.

    Did I mention the taxi with the following sign posted inside:

    Schizophrenic or Drunkard Without Guardian
    Not Permitted to Take This Taxi

    Good thing I didnt notice the sign before I got inas Emily knows, I would have obsessed about whether to get in or not and missed the only taxi in the area.

    Now for the UPDATE:

    The Honolulu drive on November 22nd was a great success. Three times the number of new potential donors registered at this years Thanks for the Giving donor drive as did last year. The Hawaii Bone Marrow Donor Registry, headed up by Roy Yonishuro, is just fantastic. Its heartwarming to see such a dedicated staff, genuinely committed to recruiting solid potential marrow donors. Sponsors included Bose, Bucca di Beppo, Starbucks, Cold Stone Creamery, just to name a few, and four great bands provided a variety of continuous entertainment. We did a live television news interview on ABC and FOX and a taped interview on CBS. And we so enjoyed meeting many new friends: the Dung family from Honolulu, the Smith family from the other side of the island, and several people who have actually donated their marrow to patients in need.

    My visit to Hong Kong led to my working with Dr. Brian Hawkins of the Hong Kong Marrow Match Foundation on a huge donor drive to be held March 6th & 7th 2004. Thousands of new committed donors are expected to join the registry at that time. This drive will be financially supported by Apple News, the largest newspaper in the Hong Kong area, BUT the foundation is in severe need of charitable contributions for other donor recruitment projects. We hope to make a successful financial appeal during the March event.

    For Thanksgiving dinner in Hong Kong, I enjoyed a wonderful evening with my now old Aussie friend of the South China Morning Post, Senior Investigative Journalist Peter Michael, and his scientist wife, of just three weeks. Peter and Natalie are fascinating people, a beautiful couple in all ways, and a delight to be with. We didnt have turkey, but we did have Indian cuisinespicy and aromatic. I cant tell you precisely what it all was, because unlike the Chinese food I could clearly see earlier this trip, these dishes included a variety of meats and vegetables smothered in wonderful creamy sauces. Anyone know of any great specials at a spa for when I get home? A week or two at the kind you check into would be a start.

    In Taipei, Dr. Chou informed me that they have located a 5:6 cord match for Kailee and that high resolution testing is underway and should be completed this coming week! If its close enough, it could be added to what we found in mainland China. YEAH!!! We just have to keep at it.

    Speaking of Kailee, I talked with her earlier today. She sounds greatgetting lots of Daddy time. I sure do miss my familyall of them.

    So long for nowI will do my best to keep you up to date as I journey onward, and dont forget to check out the new photos when you can.

    Love & Blessings - Linda

    Thanksgiving Day 2003

    Dear Ones -

    As I sit in my hotel room looking out at the lights of Hong Kong Harbor, it is Thanksgiving morning in America. This is my first Thanksgiving in 51 years without turkey and all the trimmings ( I am not without my family because I carry them in my heart always) but it is also a day that offers more reason to give thanks than ever before: Thanks for the hope we have been given that our youngest child will live to celebrate next Thanksgiving; Thanks for the family and friends that have helped us find hope; Thanks for the scientists who dedicate themselves to research that make these miracles possible; Thanks for the people we will never know who send their prayers, love, and support in our darkest hours; Thanks for the opportunity to continue our mission to bring hope to others facing life-threatening diseases.

    Love & Blessings - Linda

    November 21st

    Dear Ones -

    As you know, we were fortunate to find a perfectly matched cord for Kailee in Tianjin, China. We have since learned, however, that the cord has insufficient volume for Kailee's transplant. Sooo...the search continues. We believe that finding one perfect match for Kailee proves that it can be done. We will find another.

    A bone marrow donor remains the best option, but if we find more they can be added together for one successful transplant.

    I will update again soon.

    Never Give Up! Love Linda

    November 16, 2003

    "I knew where I had to go; I did not know how to get there." This quote from Mother Teresa sums up how Owen and I came to think about Kailee's illness. We knew we had to do whatever was necessary to give her a chance for life; but we simply had no idea what to do. Sometimes, you just have to turn the matter over to a higher source and go with it!

    Today, was a GREAT day! It began with Mr. Hong, Mr. Zhong and several other Red Cross officials, journalists and photographers coming to my hotel thirty minutes early. I, with wet hair, no breakfast and NO COFFEE, summnoned to the hotel lobby, was greeted with flowers and photos of my introduction to a wonderful man who had just donated marrow for a patient here in Beijing. Here he is, the hero, wanting to meet me of all people. Soon after lengthy discussion of arrangements and who was traveling in which car, we set off for Tianjin.

    I think it is important to note that I never know ahead of time what exactly the plan might be. Last night, I understood Mr. Hong, Mr. Zhong and I would go to the cord blood bank seeking details for Dr. Margolis. But ohhh, no, we had several people in several cars and met several more along the way.

    What a place. Although I have never seen such a laboratory, this was impressive. We toured the HLA lab in detail. I was fortunate to see each step in the HLA typing process as well as the tanks where the frozen samples are stored. Most exciting of all...I looked through a microscope to see cells from the unbilical cord that is "THE MATCH FOR KAILEE!" We then went down to the storage bank itself and saw THE storage tank containing Kailee's match. (See new Photos)

    Interestingly, this really is like a "bank" with huge, thick doors. As one of the scientists said to me "Not a money bank; a life Bank." What it saves is more important than money; it saves lives.

    After our meeting with the doctors and our tour of the laboratory, I can comfortably report the news just gets better. The doctors here report that this cord is confirmed as a perfect serological match to Kailee, has sufficient cell volume, is free of infectious issues, is now identified for Kailee alone, and will be taken to America as soon as Dr. Margolis requests that it be sent. The complete report is being translated from Chinese to English and will be faxed to me in the morning when I will immediatley forward it to Dr. Margolis for his analysis.

    It is important to remember that this is just the first step. Transplant remains a very difficult process for Severe Aplastic Anemia, one that no one wants to undertake until absolutely forced to do so. But...Owen and I will accept the warmth of this ray of hope...it sure beats what we had!

    Finally, did I mention the Banquet? The Chinese really know how to eat. Today, among many things, we enjoyed Frog soup and living bean curd (it was actually moving). Lucky for me, I missed breakfast, so come Banquet time I just dove right in!

    The final Banquet in Hunan included Pig's knees, Pigs ears, Bull stomach soup and Turtle soup. Last night I called room service for dinner, and when I asked about the menu item "Chicken Gordon Blue" they explained that it was "Chicken leg with teeth and feet." I said "Thanks, I'll have the Spaghetti Bolognaise."

    SATURDAY NOVEMBER 15, 2003

    IT'S TRUE! WE HAVE A MATCH IN CHINA!

    With the tremendous help of the Red Cross of China all indications are we have a fully matched cord blood donor for Kailee. I will travel with the Red Cross to Tianjen and the Life Bank-Cord Blood Stem Cell Bank on Monday morning.To secure the cord and investigate next steps.

    November 13, 2003

    Dear Ones -

    Yesterday, I left for Shenzhen. After a 3 hour flight, I arrived and was met by the doctor in charge of the Shenzhen Blood Center. We met two other doctors and together they escorted me to my hotel, the Shenzhen Guest House. We enjoyed a wonderful Cantonese lunch, and then proceeded to meet journalists and television reporters for a media conference. All the local newspapers and the Shenzhen television station attended.

    With the media, we toured the HLA laboratory, and I had the great opportunity to meet the various staff members that perform the HLA typing and to learn a lot about what they do and the complexity of it all. The Shenjhen Laboratory is truly state-of-the art with nearly all of the equipment coming from the US. This group of scientist is quite impressive, and with some work we had a significant discussion of the work they perform. It was heart warming to know they already knew of Kailee, knew her HLA type, and understood and could explain to me why it is so difficult to find a match for her. Every scientist, every staff member, and every journalist wanted and wore Kailee's photo button.

    They have had more than twenty successful donor matches so far, and this morning a donor's marrow was harvested and hand-carried to Beijing where a transplant was performed this afternoon.

    I will post photos as soon as I get to a hotel with the necessary capability. The media was very interested, and by dinnertime, the first report was on the local news. By the end of dinner, the stories were already on the internet. At breakfast this morning, every local newspaper had a story. I am so pleased and honored that together we were able to convey the message that people wanting to help can register their marrow and possibly save Kailee or one of the other 4 million people searching for a marrow match. We are effectively getting the message across that this is not just about Kailee. It truly is about all those who are searching for a donor, most specifically non-caucasians.

    Lest I forget, dinner was quite...ah...good...up to the point my knew friends told me what it was. Shark belly soup with a side of sauteed duck feet. Umm...Umm...Good!

    This morning, my friends drove me to the airport, and I flew to Changsha, capital of Hunan Province, Kailee's birthplace. I was shocked to be met at the airport by the head of the local Red Cross, now a friend from my February trip here, many members of the media and a huge bouquet of glorious flowers, each selected for it's special meaning, each invariable bringing good luck.

    I simply have never found a group of people kinder, more welcoming, more genuinely committed to what they do and to supporting this cause; the cause being increasing the China Bone Marrow, Stem Cell, and cord blood registry. By the way, if I didn't mention earlier, they tell me that before I came to China in February, the total China registry had about 20,000 donors. By the end of March it grew to 50,000 and now it is up to 82,000. They have the financial support of their government, the initiative, and the goal of increasing the number to 500,000 in the near future.

    The Hunan officials hosted a wonderful banquet in my honor with the most delicious cuisine one could want. Little bits of so many things, one could only imagine the preparation behind all of the ingredients. Come to think of it, one can only imagine the ingredients!

    Once again, we had a very successful media conference with numerous journalists and reporters from every outlet. I was pleased that three local physicians attended, each a specialist in the field. One doctor is a hematologist, oncologist, transplant physician. After the media event, we shared a long conversation about his work. We discussed the similarities and differences in the various drugs used by Chinese hematologists and transplant physicians and those used in the US. All wanted Kailee's HLA type and offered to look at it themselves to see where the area of difficulty lies. So far everyone agrees with Dr. Margolis' team as to the one alelle that is infrequent in Chinese populations. Believe it or not, one of the doctors here gave me a great contact of a Chinese doctor now at NIH in Bethesda, Maryland. Apparently, he is a population geneticist who studies the likely geographic location of various human genotypes. I plan to track him down as soon as I get to better internet capabilities.

    So after several television interviews as well as numerous newspaper interviews, it is off to bed for a quick sleep before we all set off an a long road journeys to Changde.

    Love - Linda

    Wednesday, November 12th

    Dear Ones -

    It's hard to believe that I have been in China nearly a week. It is time to leave Beijing, but I wanted to let you know what has been done so far.

    As I had hoped, the morning after I arrived in Beijing, I contacted Mr. Hong Junling at the China Red Cross, and he was immediately willing to help. He, along with threee colleagues (one interpreter) came to my hotel within half an hour. It was like seeing old friends. He inquired as to my mission on this trip, and we discussed how we could work together to advance our mutual goals. We arranged for a meeting later in the day at his office. When I arrived, true to his form, he had 8 of his associates present to discuss details of what we could do. We agreed on a press conference for Monday afternoon.

    Then they, and I, went to work. I emailed all of the contacts I had made last trip, while Red Cross prepared a Press Release, and contacted the local and foreign media. I worked at least 12 hours each day corresponding with other donor centers around the world, preparing for a visit with them. With email, I can work around the clock. There's always someone up and working smewhere in the world.

    We all agree that the Press conference was a huge success. nearly a hundred people were present. Mr. Hong's office had made a wonderful poster board with past news clippings, photos and artwork of Kailee among other things. The huge banner you can see in the photos I have added to this website says "Please save little Kailee and others like her - Give the gift of Love"

    Since the press conference, I have been fortunate to have the opportunity to do two television interviews, two radio interviews, and many news paper interviews. As I anticipated, people in China are very interested in knowing how to help Kailee. Through her illness, they are learning how to help many!

    Now, I must leave immediately for the airport for the city of Shengjhen. I have many more details to share as soon as I find a place to stay there.

    Friday November 7, 2003

    Dear Ones -

    Once again, a good day. Productive, I think. I spent the vast majority of the day in my room responding to emails from around the world (Japan, India, Spain) and communicating with Milwaukee Children's Hospital bone marrow search coordinators, the China Marrow Bank, the Chinese Red Cross, and a Chinese doctor who heads a company based in Milwaukee and Beijing. (Can you believe that connection? It really is a small world.)

    The question has been whether to conduct "high resolution" HLA testing on a number of potential marrow matches in the China bank. The issues center on which samples have the best chances of being at least a 9 out of 10 match for Kailee, based on the preliminary serology typing, what the cost of the advanced testing will be, how the funding and the necessary contract can be facilitated without delay, and which laboratory will conduct the testing. But at the end of the day, I think the necessary people are talking with each other, although the time difference is a challange, especially with the weekend nearly here.

    Mr. Hong's collegue called late today, as Mr. Hong promised he would, to inform me of their progress on preparing a press release and arranging a "media event" for Monday at 3:00 p.m. I understand that all is well and they expect a very good response.

    I finally took a break and went out late this afternoon. I am pleased to report that I have now mastered the fine art of Beijing street walking. Or is that "street crossing". You simply find the oldest man who looks as though he is also hoping to cross the street, which is easy because there are about a thousand on any given street corner, and you get half an inch behind him and follow like crazy. It works for me.

    By the way, it snowed last night. Apparently, no one expected it. It was beautiful!! Though I'm not sure that's what all the people were yelling outside my window at 4:00 this morning. With the horn honking, sirens, and screeching tires, it was hard to tell for certain.

    Take Care, Love - Linda


    Dear Ones -

    We realize that it has been such a long time since we have updated Kailee's website, however, we know you will understand that our first priority is, and always has been, taking care of our littlest child. We so enjoy every minute we have with Kailee that it is often impossible to attend to other things.

    As many of you know, with the help and support of our family and many wonderful friends, old and new, Owen and I are carrying worldwide our appeal for more volunteers to register their bone marrow.

    When Kailee first became sick and was diagnosed with Severe Aplastic Anemia, we were panic stricken, frankly, immobilized. Later, when we learned that a bone marrow transplant may be the only treatment to save her life, our focus became finding Kailee a marrow match. Now, 22 months later, we understand the need is much greater than our child alone. More than 4 million people worldwide are searching for a marrow match and most will likely die waiting. Sadly, that number grows by 50 thousand a year as new people are diagnosed with blood disorders treatable by stem cell or bone marrow transplant.

    Although there are approximately 8 million registered potential donors around the world, non-caucasians are drastically underrepresented in the marrow banks. Our little one, Chinese born, simply cannot find a match, YET. While we know that the success of our personal efforts to find Kailee's marrow match is statistically remote, we are not giving in to statistical probabilities...and we are certain that others who are desperately looking for a match will find that one person who is able to provide them the "gift of life." We know that two people who attended a donor drive in Albuquerque have been notified that they are perfect matches for two other children.

    So now that we have begun this global effort, I hope("promise" is just too scary a word) to update this website frequently, beginning with my first stop in Beijing, China. I left home Tuesday morning, November 4th and arrived in Beijing at 6:00 pm on Wednesday. Beijing is 15 hours ahead of Albuquerque, MST. At this moment it is 6:15 am on Thursday in Albuquerque, but 9:15 pm Thursday night in Beijing. Although my body clock says it's time to get up, the clock says it's time to go to bed...and boy, am I glad, I'm ready.

    Day one of this journey has already been HUGE. I have had two meetings with officials of the Red Cross and with a couple of scientists who perform HLA testing. I have received numerous emails today from all over the world, including India, Japan, England, South Africa, and more I cannot think of at the moment.

    The most heartfelt is from a Mother of a child in Bombay, India. The little girl was diagnosed with Aplastic Anemia just a few months ago. They have yet to find a bone marrow match and so the child is waiting for a response to ATG... just as we did with Kailee. This Mother asked if I could visit her family when I am in India. She suggested that we share information and together work on a way to save our daughters. Another personal example of someone who could benefit from a more ethnically diverse donor pool.

    On a lighter note, after my last meeting, I took a walk around the neighborhood. Although it was dinner time, I found I just wasn't hungry. Sadly, I had to pass up my favorite food stalls. Those scorpions on a stick looked so yummy, they were only surpassed by the giant beetle shish-k-bobs and the stir-fried chick fetus. Oh well, at least I'll know just where to go IF I get hungry tomorrow.

    Thank-you for following through to the end of my ramblings. I will keep in touch.

    Love - Linda


    Owen Wells, Daddy of Kailee Wells

    Business (505) 260-1600, Fax (505) 260-1602, Cell (505) 239-2361

    Plains Automotive & Casa Chevrolet Win a New Corvette Raffle Ticket

     

    My name is Kailee Wells.  I am 6 years old.  When I was a little baby, my Mommy and Daddy, Linda and Owen Wells, came to adopt me in Changde, Hunan, China.

    In January, 2002, I was bleeding from my nose, eyes, and mouth, and it did not stop for five long hours.  The doctors in Intensive Care said I lost half of the blood in my body, and my bone marrow only had 5 % of the required blood cells.  The doctors told my parents I suffered from Very Severe Aplastic Anemia, a rare and often fatal disease.  It means my bone marrow is not making blood cells.  My parents were told I had a 20 % chance of survival.

    My Mommy quit her work, and we went to Childrens Hospital in Milwaukee, WI where Dr. David Margolis, a specialist in my disease, put me on Chemotherapy. I am still not in remission, and my blood counts are not getting better. The treatments have not worked so now we travel back and forth to the National Institute of Health for an experimental medicine that might save me. Even with the new treatment, my blood counts are very low.  My doctors say I am at risk of dying at any time.  I desperately need a matching Bone Marrow Donor.  My family and friends have organized Bone Marrow Donor Drives across the United States and in China. Of the 8 million people registered so far, no one yet is a match for me.

     

    We need your help to Save Kailee and others like her.  Please:  1.  Spread the word throughout the world for all people, aged 18 to 60, to become volunteer Bone Marrow Donors, especially Asians who represent only 6 % of the Registry.  Many thousands of people are waiting for donors and will likely die without a match.  With odds of a perfect match of one million to one, we badly need new donors, especially minorities.  Encourage people to become Bone Marrow Donors when they donate blood.  Please register your Bone Marrow type with the NMDP by having a simple blood test at Plains Auto, 212 San Pedro, S.E., Albuquerque, NM 87108 or at Casa Chevrolet, 7201 Lomas, N.E., Albuquerque, NM 87110 on November 8, Noon to 5.  United Blood Services, Fae Jones (800) 333-8037, marrow.org.  2.  Buy and Sell Raffle Tickets.  The proceeds will help fund our International Bone Marrow Donor Drives and Kailees Transplant associated expenses.  Please donate to:  First State Bank (505) 241-7143, Acct. No. 1816616. 

     

    2000 Win a New Corvette Raffle Tickets will be sold for $50 each, payable to Kailee Wells, at Plains Auto, 212 San Pedro, S.E., Albuquerque, NM 87108 (505) 266-0055, Casa Chevrolet, 7201 Lomas, N.E., Albuquerque, NM 87110 (505) 262-8683 and First State Bank, 7900 Jefferson, N.E., Albuquerque, NM 87109 (505) 241-7143. Must be 18 years of age with a valid Drivers License. One New Corvette Winner will be selected in a drawing on November 8, 2003 at 5 pm at Plains Auto provided all Raffle Tickets are sold. If not, the Winner will be drawn on December 20, 2003 at 5 pm at Plains Auto. Need not be present to win. Prize is Base Model 2004 Corvette Coupe, with MSRP $43,735 + $800 Destination to be ordered through Casa Chevrolet in Albuquerque, NM. Any upgrade for accessories and/or substitutions are solely between the winner and Casa Chevrolet. Winner must pay all taxes, title and license and take receipt of the New Corvette at Casa Chevrolet. Winner consents to participate in publicity. Should less than 1000 Raffle Tickets be sold all Ticket sales will be fully refunded.

    Click here to download a flyer about the raffle to help out!