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Kailee Home from the Hospital!
I love to get messages from people. Please sign my Guestbook!
Children's Hospital of Wisconsin, Kailee's Hospital in Milwaukee
好消息，好消息啊！我们的手提箱早已经收拾好放在了前门处，但就在这时我们从“中国骨髓捐献计划”得到消息：已经找到完全和凯丽基因匹配的骨髓了！经过漫漫三年半的搜寻，遍历世界各地的骨髓库找到了差不多一千万人次，最终我们祈祷已久的捐献者来到了中国某个地方的血站与我们相遇了。 凯丽的医生Dave Margolis和我们的大搜索协调员Kathy Jadarski已经与北京红十字会人员接洽过几次，DNA分析已经确认，并且就在我们赶往机场的几个小时前，捐献者也确认同意捐献。现在，可以不去中国了，我们正在为凯丽做移植手术的准备。显然，就在几个小时前，捐献者接受了体检，很快他也要为捐献骨髓做准备了。 仿佛整个世界的人们协同努力，让奇迹发生。我们兴奋得几乎晕厥。不敢相信这是真的，但医生向我们确认“是的”这就是我们一直在寻找的骨髓。 因为凯丽情况特殊困难重重：一种罕见的病症发生一个在国外（中国）出生的孩子身上；她需要各国人士的合作；一种罕见的组织相容性抗原(HLA)配型；经历了漫长的骨髓匹配捐献者的大搜寻；威斯康星州儿童医院在星期五起草发布了新闻。下面的就是新闻稿和我们这个“大家庭”在得知这个好消息时拍摄的照片。 爱你并祝福你 Linda 和 Owen 一直对骨髓捐献保持乐观的医生们和家人们最终为威斯康星州儿童医院的小病人凯丽在中国找到了匹配的骨髓。 密尔沃基市（2005年9月16日）Linda和Owen从威斯康星州儿童医院得到消息：在中国已经为他们八岁的小女儿找到了一个骨髓非常匹配的捐献者。走遍世界各地从2002年起他们为从中国领养的女儿寻找匹配的骨髓。儿童医院领导凯丽治疗小组的David Margolis医生称，进一步的测试正在进行中，小凯利有望在十月份接受移植手术。 今天下午2点在儿童医院，Margolis和Wells一家将出席新闻发布会。凯丽有望在门诊大楼大厅的会议室出席发布会。请大家及时到达门诊大楼在医护人员陪同下出席。 “通过中国的骨髓捐献计划，终于找到了一个吻合匹配的非血缘关系的骨髓捐献者”Margolis如是说。他是儿童医院骨髓移植计划的主任，威斯康星州医学院小儿科副教授(血液学和肿瘤学)。来自那个成年男子捐献者的血样已经送往密尔沃基市，血液中心确认骨髓完全匹配。基于DNA序列，捐献者在我们检查的所有的10项指标中全部符合要求。已经联系上那位在中国的捐献者，并且同意捐献。他正在接受进一步的体检以保证捐献时的健康和体能状态。我们期待着下周拿到那些测试的结果。 在2002年1月，凯丽被诊断为再生障碍性贫血，一种骨髓障碍综合症，这种病会导致红/白血细胞和血小板的造血不足。有这种状况的病人会经历贫血，同时会受到日益严重的感染和出血的危险，即使是在再平常不过的日常生活当中。 自从确诊后，这个新墨西哥州Albuquerque城的家庭就搬迁到了密尔沃基市接受儿童医院和Margolis医生的治疗。他们一头扎到搜寻与凯利骨髓匹配的的骨髓捐献者登记运动当中，奔波于美国和中国之间。今年年初通过美国国家捐献骨髓计划，确认找到了一个合适的非血缘关系的捐献者，凯丽于1月25日在儿童医院接受了骨髓移植手术。移植最终排斥，Wells一家人继续寻找。 “我们原本打算今天奔往中国继续我们的大搜寻”Linda Wells说“我们的旅行包早已经装好放到了前门，就在这时我们收到了消息。这对我们简直就是一个180度的大转变，至今我们仍处在兴奋得恍惚之中。昨天，我还认为这肯定是梦，一个在飞往中国的航班上我为Owen诉说的梦。” Linda继续说道：“这个消息是许多人共同努力的结果：中国骨髓登记库；Margolis医生和每一个儿童医院的医生，是他们延续着凯丽的生命得以迎来第二次移植；血液中心的人们；Atwater学校的老师们，自从凯丽产生排斥，是他们一直为凯丽输血，我们才得以缩小捐血者的数量让凯丽免于奔波。每一个人都做得太多太多了，庆幸的是，在这个过程当中也为其他的的病人找到了捐献者，遍及世界各地。” 医院将发布最新消息并于9月22日星期四再次会见Margolis医生和Wells一家人。 希望你知道，在这个残酷考验的始终，我们一直都不是那种因为资金问题而抱怨的人...可是，今天早晨的电子邮件令人无法忍受，我只是让大家了解我们的每一天经常伴随这种让人发疯的事情开始。 这个回复是花了将近三个星期从北京的医院发过来的，回答的问题是关于凯丽在中国进行一次简单的血小板输血的费用。 我们的协调人员与内科医生和实验室一同估算出血小板输血的费用。当然这只是一个估算，也许还需要另外的一些实验和测试。 估算的费用 　 所以现在，我们可以重新开始我们的星期天早晨了。
亲爱的朋友和家人： 仿佛一夜之间所有的求助都涌向了中国。一直以来有许许多多的障碍，我们经常感到好像陪同凯丽的这段旅程也许无法走完。似乎每一天都面临新的问题，但就在我说“哦，一个新的问题...哦哦，回头看看，还有15个问题等着你呢”的时候，列表中的两三个其实已经解决了。 我们需要的就是“坚持”。似乎手头上的问题总会有解决办法的。如何让凯丽足够健康来完成旅行，如何在飞机上保证她的安全（远离飞机上的细菌），如何确保她在中国继续输血，如何安排继续为凯丽提供血源，如果她对血液产品有反应怎么办，如何解决食物和水的问题，住在哪儿，如何弄一部中国的手机，办理护照、签证，如何做好旅途中的免疫措施，新海报的翻译，语言上的障碍，时差，等等....相信车到山前必有路。 同样重要的一点：只依靠自己，我们一件事情也完成不了。Margolis医生和他的同事非常慷慨，花费了大量时间与中国北京的血库、北京各医院的医生、中国骨髓捐赠计划、中国红十字会组织进行交涉。同时回答我们大量的问题。 中国和美国人们之间的交流网络是非凡的。每次我们发电子邮件给某个人询问有关问题，比如：后勤方面的，似乎总能透过层层关系找到知道答案的人。 我们的艺术家朋友 Eric，设计了新的海报、单页和腕带。并由Owen的一个厂商和中国的一个印刷厂印制完成。我们的英文被一个中国朋友的朋友翻译成中文，并制作成电子版文档存储和发送到印刷厂。所有这一切都是朋友们做的，远远的超过了我的能力所及。 我们的朋友和艺术家Corie做了大量网站方面的工作，添加新图片，更新文字，并将网站翻译成中文。因为她的努力，我们收到世界各地大人和小孩的电子邮件，深受启发和感动。还有，如果你在这个网站的Update栏目看不到海报图片，请按住Shift和Ctrl键用鼠标点击刷新按钮刷新那个页面。 我一直四处询问我们可以为那些孩子带些什么。我知道大孩子会用到艺术用品，小孩子会用到耐洗坚固的助长玩具。所以，如果你知道任何人有此爱心捐助这些东西，我们希望尽可能多的带上。我们不得不尽快地办好这件事情，因为9月16日星期五就要离开了。 凯丽很幸运上个星期开学了，现在是一个快乐的三年级学生。她现在相对稳定，七天为一个周期。上个星期一，她身上布满了瘀块和瘀点，身体虚弱，感觉眩晕。那天她接受了Owen的血小板，几天后输了他的血。之后她感觉良好，持续了几天，然后一周左右她的状况又开始下滑。今天我捐献了血小板，星期三将会输入她的身体。从某种程度上说，这种周期性的变化是意料之中的。 上个星期我们收到一封来自中国骨髓计划的电子邮件，通知我们说他们为凯丽找到了三个“完美”的匹配。当然，这是血清学意义上的匹配，迈出的仅仅是第一步。在发送了上百万计的电子邮件后，每一个人都同意将他们的血样发给Margolis医生进行高精度的测试。中国的朋友非常热忱，要知道这之前我们一直被卡在这里。现在我们要做的就是静静的等待完整的测试结果出来。 凯丽正期待启程。我们希望住在长沙的华天旅馆，因为就是在这里1998年我们成了一家人。在那里有我们最美好的回忆，凯丽第一次洗澡，她第一次叫“爸爸”，她的第一餐（椰菜鱼肉）。她很快乐因为那时在北京她的哥哥Mike和姐姐Taunya加入我们，她将会老道地四处走动很快熟悉起来。她尤其想带他们去吃北京饭店旁边的大排档。她记得很清楚上次我在那里时送给她的照片。 先写这些吧... 保重，Linda 亲爱的朋友们： 深深的感谢大家一直以来对凯丽和我们全家的关注。我们经常看凯丽的留言本和电子邮件，但似乎永远没有足够时间去回复每一个人。要知道大家坚定不移的发来热诚祝愿、各种想法和祈祷是我们那些日子里的精神支柱，支撑着我们战胜凯丽骨髓疾病的信念。 凯丽的无情的病情不断提醒我们需要做出决定，我们和Margolis医生回顾了所有现在还可以使用的方法。对我们而言，第二次从同一个捐献者身上移植骨髓太残酷了...而且这种治疗再次成功的机率也非常小。 凯丽一直需要输血。她的血小板数量经常在10以下，有时低到4。白细胞数量在最近降到了80左右，血色素降到了5。幸亏凯丽的Atwater学校的老师们已经成了固定的血液和血小板的捐献者，他们加上Owen和我足以跟得上她的不断增长的输血需求。因为一直需要输血，所以极为重要的是她的活动范围必须被限定在捐献者的周围。而且，我们从威斯康星州血液中心获得的支持，也远远超过了我们的期望。医生们协调管理着没完没了的和错综复杂的捐献工作，只要有需要在任何时间他们都会为我们安排好时间表，抽血医师近似纵容的允许我们一直粘着针管和成几个小时的使用设备，为此我们充满感激。 最近离去的一个6岁的可爱的小女孩Sara，也是由一个在加州充满爱心的家庭从中国领养的。她的离去让人五脏俱焚。象凯丽一样，Sara挣扎着去寻找匹配的骨髓，但还没等找到她就永远的离去了。http://www.marrowforsara.org/ 如果我们能让更多的人，不管什么种族，都成为约定的潜在捐献者，那么象Sara那样的小孩子就可以拥有未来，无数象她那样的家庭也就不会经受撕心裂肺般的丧子之痛了。 自从我们了解到从生物学上骨髓移植的治愈率已经提高到了95%，Owen和我一直在为下一个全心的努力做准备。在9月，Owen、凯丽和我将前往中国，先到北京咨询我们的好朋友中国红十字会的洪俊灵（Hong Junling）先生，然后向中国其他可以提供支持的朋友寻求帮助。我们希望带凯丽去她的故乡能够丰富她的人生，也许会鼓励中国不断扩大骨髓捐献者登记库取得更伟大的成功，现在已经约有300000志愿者了。当得知在中国已经完成超过280例非血缘的骨髓移植时，我们非常激动！！！ 然后我们将带凯丽去湖南省的长沙和常德，在那里她度过了生命里的第一年。我们将倾出所有去寻找凯丽的生身父母。只有找到她中国的父母，才能在地理上指引我们去最有可能在基因层面匹配成功的地区。只有找到她中国的父母，才能缩小大海捞针般的漫漫搜寻。 Sara和他的家人不懈努力去救她的精神给了我们莫大的决心和信念。凯丽的哥哥Mike和姐姐Taunya在10月初将会加入我们在中国努力的行列。意识到我们的大儿子和大女儿如此深爱凯丽，禁不住喜极而泣。带着他们的家人， Mike和Taunya将离开他们生活和工作的地方，在中国竭尽他们全家人的努力去获得骨髓的捐献，想尽一切办法去挽救妹妹的生命。 愚公移山，终将成功。 Chinese version by itpretty Dear Friends of Kailee- June 27, 2005 Day + 153 Linda and I have been working hard carefully providing quality of life for Kailee. We have explored new medical developments abroad, some which may have promise, but it is unlikely that they will be ready in time for Kailee. We continue to especially encourage adult stem cell bone marrow and umbilical cord donation. While our family struggles with our decision on how best to save Kailee, we are even more determined to learn and educate so that more people may live. "With more and more countries aggressively developing stem cell therapies, the United States is in real danger of being left behind" National Geographic, July 2005, "Stem Cells - The Power to Divide", www.nationalgeographic.com . "While U.S. politicians bicker over embryonic stem cell research, doctors around the world are staging a quiet medical revolution." Newsweek, Summer 2005 Special Edition "The Future of Medicine.", www.newsweek.com, www.stemcellnews.com Only adult stem cells have ever been tested in humans! They are easily available from informed healthy adults and from baby's umbilical cords, normally discarded as medical waste with no risk to mother or child. Adult stem cells have no moral issues, unlike the embryonic stem cell debate currently in the news and before Congress. Please become knowledgeable on all stem cell possibilities and ask your fellow man to do the same. Become commited as a bone marrow donor! Sign up and give the Gift of Life so perhaps Kailee and others may live. Sincerely, Owen Wells, Daddy of Kailee Dear Friends of Kailee- May 25, 2005 Day + 120 The Stem Cell Research Enhancement Act passed Tuesday by 238-194, less than the 2/3rds majority required to override a Presidential veto. Please contact each of your elected Representatives who voted no and strongly encourage them to vote YES in favor of stem cell research should another vote become necessary. Also contact President Bush and our Senators for the upcoming Senate vote. Please include www.KaileegetWells.com in your communications. Our sweet Kailee's sad face and story are real as are so many others in need! This is not about party politics as usual. We are trying to save Kailee right here in the United States! www.nytimes.com/2005/05/25/politics/25stem_rollcall.html to see how your lawmaker voted. www.congressmerge.com/onlinedb/ to Contact your Congresspersons and Senators Sincerely, Owen Wells, Daddy of Kailee Dear Friends of Kailee- May 24, 2005 Day + 119 There are two Stem Cell Bills in the House of Representatives in Washington, D.C. to be voted upon right away. Please contact your elected representatives and strongly encourage them to support both bills today! The Castle-DeGette Bill by Mike Castle, R - Delaware, and Diana DeGette, D - Colorado. The Smith-Davis Bill by Chris Smith, R - New Jersey, and Artur Davis, D - Alabama. In addition, please contact President George W. Bush and ask him to support Stem Cell bills, not to veto them! Email - President@whitehouse.gov (202) 456-1111 Sincerely, Owen Wells, Daddy of Kailee Dear Friends- May 19, 2005 Day + 114 Who would have imagined that on the very night the Wells family packs one lonely suitcase in Wisconsin, destined for faraway shores this Saturday, each and every national evening news report would discuss the dramatic advances in stem cell technology abroad. It's true...at the same time conventional medicine here at home has little more to offer our dearly loved Kailee, we have been given hope in new stem cell technology being tested 8,000 miles away. As a truly great medical mind once said, "Either this treatment is on the table for Kailee or it's not." Well...we intend to find out! If it works, it has the potential of curing Kailee and millions of others suffering a multitude of diseases; aplastic anemia, muscular dystrophy, cancer, heart disease and others. If not...well, we need to know it...now! Kailee has had a rough last couple of weeks. We took her home to Albuquerque to visit her family and friends, and before we had the chance to visit everyone we had hoped, Kailee had an unexpected bleed and wound up spending eight hours in the emergency department. She needed a transfusion of platelets just to be able to fly her back to Wisconsin. Once here, she did well until Saturday, when to our surprise, she started bleeding again...this time much worse. She lost a lot of blood, but was the bravest child you could imagine. She needed platelets and a procedure in the ER to stop the bleeding, as well as blood to replace all that she had lost. Through it all, Kailee was a trooper. The doctors and nurses were amazed. The procedure she endured, the doctor told us, was rarely done without a general anesthetic...but our Kailee fought through it without. It was... traumatic ... but Kailee was an inspiration for us all. She knew what had to be done, she took deep breaths, and never flinched! Now, we need to do the same and determine, the best we can, whether this new stem cell research can save Kailee! Love & Blessings - Linda & Owen Dear Friends of Kailee April 28, 2005 Day + 93 Sadly, Kailee's marrow has returned with Aplastic Anemia. Therefore our choices ahead will be extremely difficult ones. Today, as Kailee gets another round of transfusions and prepares for her 13th bone marrow biopsy tomorrow, I keep thinking what can we do to find the special person that will match Kailee and Save her Life, while Kailee is still strong enough to survive a second transplant and, in all probability, her last chance at Life? I believe we must do another major push for bone marrow donation worldwide. The response would very likely find many matches for lots of deserving children and Give them the Gift of Life! If we are extremely fortunate, we could even find a match for our sweet Kailee! Right away, please go to everyone with high standards in the media that you can think of and send them requests for the Kailee Story! Tell them why in your own words. Encourage major programs such as: Oprah Winfrey, Larry King, Today Show, Good Morning America and others to join our efforts. Please help us Save Kailee and others like her. Please share your resources and contacts to help us get an audience with the producers of these good programs. "Thus far, we know of eleven matches and 205,000 people that our 50 drives in 15 states and five countries, with the help of many wonderful people, have contributed to. I have learned that a child in Houston, TX was the first American to receive marrow from a donor in China. That is such terrific news and I hope the beginning of big things to come from National Marrow Donor Program and the Red Cross Society of China. Help us Give the Gift of Life! A Heartwarming Mother/Daughter story is sometimes not enough. Professional journalism is big business and we can appeal to ratings. Kailee's story has been covered by Parents Magazine, the Today Show, the Associated Press many times, the New York Times, 14 articles in the South China Morning Post in Hong Kong, www.scmp.com February 2003. www.KaileegetWells.com received 732,773 verifiable web hits in March 2005. Go to any search engine under Kailee Wells and there are 1,000s of stories written by television, newspapers and magazines from all over the world. We need to reach even more people. This is about doing what is right for humanity. Please, I am just a Daddy desperately trying to save his little girl. Sincerely, Owen Wells, Daddy of Kailee
Dear Friends of Kailee April 15, 2005 Day + 80 Since Kailee rejected her donor's marrow transplant we were absolutely crushed. After waiting so long and hoping against hope for the absolute best transplant option to cure and save our child only to have our one best attempt fail with rejection was beyond despair. Kailee continues to need transfusions, although the timeframes in-between have improved slightly. Now, at least, Kailee's own marrow is returning. Will it be healthy marrow which could be fantastic news if it lasts or will the Aplastic Anemia rear it's horrifying head again? We do not know and there is no easy way to determine our much desired clarity. We are trying, very trying, to be patient and wait for long term trends in Kailee's lab work to give us clues to the answer. In the meantime, the three plus long years and many hospital hours have taken their toll and we as parents are just existing, working to take pleasure in the day to day tiny little things that we once so took for granted. We love each other and of course, Kailee, very much. We are trying to focus on enjoying one another and relearning to do a few things away from the hospital. It feels so alien, so unfamiliar, but we are starting to remember that we need to take care of ourselves as well. We have too! Our little girl is completely counting on us. The steps of our journey are just a bit easier to take with the companionship of so many who care for our sweet child, Kailee. As we talk of steps, I recall fondly, that Kailee took her first steps on April 16, 1998, from Daddy to her big brother, Mike on his and our other twin son, Ben's 23rd birthday. There are children we see in our good hospital whose names are not well known and for reasons, which we cannot possibly comprehend, have little parental companionship. Please send them the presents and care packages that you have been sending for Kailee to the Children's Hospital with the words Kailee Foundation and we will see that other children also have a few pleasures as they fight their fights against these terrible illnesses that so often claim our precious children. Sincerely, Owen Wells, Daddy of Kailee Dear Friends- April 1, 2005 Day + 66 Kailee continues with an increasing need for transfusions, mostly platelets. She is getting more symptomatic between transfusions, and the symptoms (bigger and more bruising and a showering of petechiae) start within days of receiving platelets. Of course, we just stay worried, but we do not want to begin another transplant unless her trend continues downward. The next week or two should give us a little more clarity. The National Umbilical Cord Blood Bank Bill 605 legislation is in progress! There will be a hearing on Capitol Hill, Monday, April 4, 2005. Please call upon your Senators and Congresspersons to support Bill 605 and to attend Monday's hearing! It's easy, just pick up the phone and call their offices. "Passage of the bill would create a National Cord Blood Stem Cell Bank Network to build a ready-to-use inventory of at least 150,000 top quality units to make matched stem cells available to transplant patients of all ethnic groups." (Robin Weiner/U.S. Newswire) NM Governor Bill Richardson signed a similar bill, sponsored by Senator Nancy Rodrigues, on Saturday, March 19 to honor Kailee's seventh anniversary of joining our family. There are eight states with similar bills passed or in progress. Our goal is to assist in passing National Umbilical Cord Blood Bank Bill 605 and to help pass similar bills in all 50 states. The following excerpt is taken from a recent New York Blood Center press release: Cord blood stem cells, obtained from the placenta and umbilical cord and donated by the mother, have been successfully used to treat [certain] malignant and genetic diseases. Cord blood is a non-controversial source of stem cells, which—unlike bone marrow—can be collected without risk of &nb "Today marks a new beginning in our unending quest to save lives," said Dr. Jones. "The introduction of this bill calls on legislators to recognize that patients in need of a bone marrow transplant do not have to die waiting for a match. There is another option: cord blood." Linda and I continue our ongoing request that everyone who is able, join a marrow registry by contacting the blood center in your area. Help by organizing a bone marrow donor drive. Let every expectant parent know that they can help by donating their baby's cord without charge to themselves. Together, we can save the thousands of people like Kailee who continue to search and hope for a match. Sincerely - Owen Wells, Daddy of Kailee
Below are information sheets about the bills introduced in Feb and Mar (2005) that would establish umbilical cord blood banks for the benefit of anyone having a blood disease such as leukemia or aplastic anemia etc, like Kailee and many others. There will be a hearing on Monday, so please call your Senators and Representatives to attend the hearing and support it.
House Bill # 596
Senate Bill # 681 If you're not in the Milwaukee area, use http://www.congressmerge.com/onlinedb/ to reach your Congresspeople.
http://www.nationalcordbloodprogram.org for more info. PRReleaseFeb8CordBloodBill-HR596.doc Friday, March 25, 2005 Dear Family & Friends Day + 59 I know we have been silent for several days now, but it has been time we needed to reflect on the last three years, years of unpredictable and relentless change, of constant uncertainty that has challenged our human capacity to withstand stress, all culminating in the last few months. It was in the first days of this past December that we set our course for Kailee's treatment to begin December 9th, only to wake up on the 6th to find we had suddenly veered down a different path. At first we were lost and had no idea where we were headed. In January we found our way and headed straight down the transplant highway. That route seemed to be going as planned, bumpy in places, down right rough in others, until in February ... we crashed into another dead end. Since that wreck, we have been muddling around, dazed by the impact. It is only now, a month later, that we are finally beginning to grasp the idea that the map we so carefully charted didn't get us where we hoped to go. Now, as we brush ourselves off and study new maps, we contemplate whether jumping back in the driver's seat is such a good idea. Kailee still fights the bone pain and nausea, and she seems to have increasing transfusion needs. She continues with IV fluids 18 hours every day and with IV drugs every 8 hours. Kailee's friend Meagen and our friend Lynn, Meagen's mom, came from Albuquerque to Milwaukee last week and spent a lot of time with us. They were so great! They spent the entire first day here with us at the hospital while Kailee received her teacher's, Ms. Northey's, platelets. (I posted a few pictures) The second day, Lynn and Meagen went sightseeing on their own, while Kailee rested, and Owen and I made a big turkey dinner to celebrate our "Family Day." March 19th was the seventh anniversary of Kailee joining our family. Kailee's friend Morgan and our friend Margaret, Morgan's mom, were to join us for dinner at 6:00, but at 5:30, after talking to Dr. Margolis, we decided Kailee needed a transfusion of red blood. So, instead of the festive dinner we planned, off we went to the HOT Unit, only to get back home about 1:00 am. But Lynn and Meagen were terrific, up early the next morning, off again on their own to see some of the many great things about Milwaukee. Sometimes, the twists and turns of our days remind me of my adventures in Africa...good times, great times in fact. Swahili language has a great word that, for me at least, encompasses all the adventures of life ... the word Safari. I used to view life as one big safari, an adventure, to live as fully as I dared, but my thinking was distorted by believing that I would eventually find my way back home. And that kind of thinking is what I am coming to see has caused us to be stuck in this three-year fog. We have been banging our heads against the wall, trying to get back home, to the solid ground we knew before January 16, 2002 (our personal 9/11). Thing is...some adventures are so big, so far, you don't get to go back. Perhaps, we aren't meant to go back. Thanks for Caring - Linda & Owen
Wednesday, March 16, 2005 Dear Friends - Day + 50 Kailee is still not yet back to square one, but she has good times among the bad. The pain has decreased, perhaps the narcotics, perhaps distance in time from the transplant. Her hearing sensitivity is a lot better, but we still smile when she mentions her "sensible" ears. Kailee really enjoyed her big sister Taunya's visit, although for the first day of the visit we spent about 9 hours at the hospital while Kailee received blood and platelets (her platelet count was 8) as well as other medications. She wasn't up to doing much the rest of the weekend but just enjoyed having her big sister here. As for where we go from here, no decision yet. The doctors and transplant coordinators have done another donor search through the world wide donor registries and have reported to us that no new potential donor matches for Kailee have entered the registry. Last Fall, people acknowledged that the decision we had to make was one no parent should have to make for their child, yet here we are again. We made a decision, the best one we could with the information available to us at the time. It didn't work...so what now? Try again, or try doing nothing. Everyone assures us miracles abound. With the thousands of people around the world praying for Kailee, surely God must hear. For now, Kailee remains transfusion dependent, continues on IV fluids 18 hours per day, plus an IV drip of antiviral drug every eight hours around the clock, a white cell growth factor IV every other day (her ANC was 187 on Tuesday with the GCSF), another antiviral (IVIG) weekly at the hospital, plus a myriad of oral medications throughout the day. We will let you know as we know more. Love & Blessings - Linda
Wednesday, March 9, 2005 Dear Ones - Day + 43 Kailee has had a tough few days with increasing pain "from top to bottom" she tells us. Yesterday at clinic was probably the worst pain she has experienced since the transplant itself. We couldn't even touch her because her skin hurt as well as her bones. She writhed and rolled around the hospital bed, sobbing, screaming until IV morphine brought about temporary relief. It was so very difficult to watch, agony for both for her daddy and I, as well as for the hospital staff I'm guessing. I can handle a lot... at times, I even accept that Kailee might die, but watching my child with this kind of pain brings me to my knees...sheer panic. I want to scream for something, someone to stop her pain...as if demanding it, willing it, could make it so. We started her back on methadone and morphine, and today Kailee is finally getting relief. She still has pain "all over" but her spirit is certainly better today. Owen and I disconnected her IV fluids for awhile, and we got her outside to enjoy some sunlight. Although the wind chill temperature was 9 degrees, she thoroughly enjoyed it, bundled as she was. And great news, Kailee's first ever friend, Meagan, and Meagan's Mom, Lynn, might come for a visit from Albuquerque later this month. They were planning to come in August but thought coming now might help Kailee...enjoying time with Meagan, just being a kid. When I told Kailee it might happen, I thought my eardrum would explode with her squeals of excitement! Owen and I met with Dr. Margolis yesterday, and it looks as though a second transplant will be our last hope. By the time a donor can be ready, we are guessing first week in April is when it should all begin again...that's if her body holds on that long. In an emergency, an umbilical cord blood transplant is an option and available anytime. If indeed we do go forward, we are told this time the transplant will either be successful or she won't survive it. Blood counts again tomorrow...we can only pray they are better than the drop from Monday evening counts to Tuesday morning counts. We continue to send you our love and gratitude for your continued support. Owen and I are trying to answer your emails, but in the meantime, please know we continue to read each one, even if it is 3:00 am when one or the other of us can't sleep, and we print them out so Kailee will always remember how much every one loves her and wants her to heal. Love & Blessings - Linda Saturday, March 5, 2005 Dear Ones - Day +39 It pains me to write this message, but so many of you have asked the results of Kailee's DNA test this week, that I realize we need to let you know what is happening. Over the last couple of days, various DNA and other blood tests have confirmed our fear that Kailee's tough little body has rejected the transplant. Yesterday, she needed a platelet and red cell transfusion, and her white cells require continued support with IV infusions of GCSF. Kailee's platelet count was 12,000 (normal is 150,000 to 450,000) and her hemoglobin was dropping a whole gram every couple of days. She was pale, tired, weak, and nauseous, and today she needed morphine for complaints of bone pain, presumably from the GCSF. So, while some say we are at square one, for me, we are at a place behind square one. As you know, Owen, Kailee, and I have waited and waited for the answer to conquering her Aplastic Anemia...after all the various drug treatments failed, all of the doctors involved concluded that a transplant would be required to knock out her disease. We searched and searched for a suitable donor. Dr. Margolis analyzed every conditioning regime and possible donor. When it seemed we were running out of options, we all held our breath, took the plunge, and Kailee bravely went through the transplant process. For a while, it looked as though it was working. It seemed as though her pain and misery might pay off in the end. Last week, we felt safe enough for Owen to go to Albuquerque for business. Yet, it is now day + 39, and here we are. Owen is on his way back to Milwaukee and will be here tonight. As I understand things, rejection usually means a death sentence. Because Kailee underwent a very new conditioning protocol, developed in Italy, there may be some things left to try. To me, it feels like a death sentence with an appeal process. The graft (transplant) is gone, yet we know Kailee's body is again making some cells on its own...so could her own marrow reboot? Theoretically it's possible. Waiting a few days will give us some indication if it might happen for Kailee. We are told that we must consider yet another transplant with radiation and more chemotherapy, soon. Of course, the donor may not be up to going through it again, and we have also to consider not putting Kailee through it again. Yesterday, at clinic, Kailee couldn't help notice my red eyes and tear stained face. Dr. Margolis tried his best to explain to Kailee what was happening inside her body. She really didn't want to hear much about it and had no questions. In typical "Kailee" fashion, today, out of the blue, she asked me what Dr. Margolis meant when he said her T cells are killing off the donor's cells. We went through it again and she asked if that means she needs another transplant. I told her, I thought the answer would be yes, but Daddy and I would agree to it only if she wanted to try again. Emphatically, she said "YES, I want to be done with this stupid APLASTIC ANEMIA!!!" So, for now, we are told, "enjoy her," "think quality time," "let a friend come over," "let her enjoy being home," "help her to enjoy her big sister's coming visit," "you have to weigh the risks of catching a virus against her quality of life," blah, blah, blah !!! We had to do all of that before, but at least then we had the fantasy of the transplant being THE cure. As we contemplate what's next, what to do next, the days will be more difficult than ever. Please continue sending your thoughts and love Kailee's way. She continues to 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 Children€™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,€ said Margolis. €œTechnology 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.€ 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. €œWe are grateful to the anonymous donor who enabled Kailee to undergo the much needed transplant,€ said Linda Wells. €œKailee 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,€ she added. Linda and Owen Wells now are devoting their energy to caring for Kailee while she is treated as an inpatient at Children€™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.
World Bone Marrow Donor Drive
Click below to download a flyer to use for Bone Marrow Donor Drives in your area! 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
For Immediate Release
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