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Dr. Gilman

Erin visited the clinic today for blood counts. As has been the case with previous clinic visits, she had a low platelet count and virtually no white blood cells. She thus underwent another platelet transfusion today.

The pieces are starting to fall together for Erin's next transplant. The donor search essentially has been narrowed down to two to three potential donors, two of which were identified during Erin's initial donor search. Because much of the donor testing was performed with the initial search, this search is progressing much more quickly. Dr. Gilman has started to put the transplant schedule in place. At this point, it looks as if Erin will start her pre-transplant conditioning regimen around June 25 with the transplant occurring in early July.

As things are progressing rapidly on the transplant front, it is no longer necessary for Erin to return to Houston for further clofarex treatment. Dr. Gilman wants to make sure that Erin has sufficient time for her counts to recover and to have a couple of "healthy" weeks before transplant. To that end, Erin began GCSF treatments today to help elevate her white blood cell counts. As in the past, Lois Moushey (our friend and neighbor) will come over every evening to administer the GCSF shots.

Although we are glad that we do not have to make another trip to Houston and once again split our family apart, we are disappointed that we will not get a chance to wish Erin's caregivers at MD Anderson an appropriate good bye. We appreciated the first-rate and compassionate care that Dr. Jeha and the rest of the MD Anderson doctors and caregivers rendered. If not for them and the efforts of ILEX Oncology (the developer of clofarex), Erin would not have had this second chance for cure.

Pictures from the recent Sante Fe Trail Awards Ceremony are included in today's update.

Mrs. Donegan and Mrs. Thoeni present Erin with the Outstanding Sixth Grade Girl Award.
Ring of Hope


Despite being an emotionally exhausting day, today was a very good day. First of all, we received word that our primary insurer has overturned its initial rejection of coverage for Erin's transplant. We are grateful to Rhonda Taylor, our case manager at Blue Cross Blue Shield, for guiding and supporting us through the appeal process. Rhonda had been with us since last summer and has been a great source of guidance and support throughout Erin's transplant ordeal. We still anticipate a battle with our secondary insurer and will pursue that battle aggressively.

Today was a day Erin had been looking forward to for a long time—she "graduated" from sixth grade today and was able to attend the Santa Fe Trail awards ceremony. It turns out that Erin had more than just her graduation to celebrate, as she and Laura Carlson were named as Santa Fe Trail's outstanding sixth grade girls. This honor means a lot to Erin because it was the same award that her sister Rachel won three years ago. During the presentation, Mrs. Thoeni (Erin's second and sixth grade teacher) read and presented Erin with tributes from the SFT faculty. These tributes are published below today's update.

After the awards ceremony the SFT sixth grade surprised us outside the school by surrounding Erin and Mom and Dad in a "ring of hope." Each student held a pink balloon and released the balloon after a prayer and well wishes for Erin's transplant this summer. We were truly touched by today's kind words and expressions of support.

Outstanding Sixth Grade Girl

"She is a trooper. She didn't let the difficulties of that year get in the way of being a kindergartner. She had a very positive attitude about school and always gave her best effort (Mrs. Meyers)

"She is truly hero material. Such a spunky, positive, creative, delightful young lady! She manages to continue to be herself despite of daunting obstacles. I am better for knowing this dear person. She has been an example for all to follow who have known her throughout elementary school. (Mrs. Mallonee)

"What a special privilege to interact with her. What a kid! So very intelligent, and patient; so understanding of herself and others. She is so kind and cheerful and funny! Devoted to her friends and family, she seems to emanate a sense that she is in Good Hands, and that knowledge gives her a glowing sense of mature perseverence. I feel truly blessed to have had her as one of my Bright Lights! (Mrs. Brendler)

"I am inspired and in awe of her strength, beauty, and power. She has a wonderfully warm, positive spirit (Mrs. Bishop)

"In second grade this student was very eager to learn. She was always attentive, focused and goal oriented. She seemed to love doing homework, especially math. She was often smiling, usually happy and always positive. Not only did she have qualities that a teacher loves to see but she had qualities her classmates enjoyed also. She often made peers laugh, helped with homework and included others in activities. Outstanding was definitely the word to describe this student in second grade. (Mrs. Thoeni)

"She has a desire to learn. Although she has had some difficulties, she overcomes obstacles in her way to get her work done. Her will to do her best has been an inspiration to us all. (Mrs. Debus)

"What a terrific girl. She's smart, responsible, brave, creative and kind to everyone. She was a delight to have in my room. I learned and am still learning from this wonderful girl. (Mrs. Miller)

"I never had this student in my class but I want her to know how brave I think she is. I admire her tremendously. (Mrs. Ward)

"She always wanted to do her best. She was always careful with everything she did in class. She was also careful with everyone. She was never unkind to a single student. Somehow she found the best in everyone. I could ask her to work with anyone and it would be done thoughtfully. She never rolled her eyes or complained about her partner, but instead figured out how to include her partner in the project so both of them would benefit. I always looked forward to my day with her. Teaching her was an honor and a delight. (Mrs. Unruh)

"She was not in my classroom much to my dismay. Nonetheless, I have enjoyed her enthusiastic, positive spirit as a 5th grader and also a STUCO officer. She is fun to be around, but at the same time caring towards others. She has not been able to be here at school many days this year,but she has stayed very connected with us. Student Council officers should be willing to be leaders and models of good citizenship. She is this. A leader inspires by actions, not by words. Determination and courage are qualities that everyone of us will need in our lives. She models these character traits every day. She has a smile that lights her face and sparkles in her eyes. Her sense of humor and laughter are contagious. Whatever she does, she does it with her whole heart. Congratulations. (Mrs. Owens)

"This past year, it was an honor for me to teach this student again. It was not surprising for me to see the same outstanding qualities in her that I first saw in second grade. She is still attentive, focused, and goal oriented. She still seems to love homework--well, in math that is. She amazes me with the way she can quickly crunch numbers and solve mathematical equations in her head. She is a gifted and talented writer. This girl is a terrific student but a more awe-inspiring person. She always greets me with a smile and a twinkle in her eyes. I am mystified by her determination, her grace, her kindness, and her beauty. I am so very proud of you! Congratulations!! (Mrs. Thoeni)

"Even though she was 'officially' in my room this year she has really belonged to the whole school. From her fierce determination to not get behind in her studies, to determination to fight and beat this cancer, she has been an inspiration to us. This is an award not just for 'Outstanding Student' but an award for 'Outstanding Family.' Thanks for sharing your lives with us and congratulations. (Mr. Green)

"It is hard to put anything eloquent into words to describe this young lady. She has a sense of style at such a young age. She is such a role model for all of us here in this gymnasium today. This young lady needs to realize that she is not winning this award because she is sick and people feel sorry for her. She is the recipient of this award because she is deserving of it. Even though she has only spent one day in our school this year, she has bonded us as a community and united us as a school. She involved us in activities such as the Light the Night Walk, a tradition we hope to continue. We have raised money for Camp Quality, because it is a camp that is deserving of our attention. You have tought your classmates how to find joy in very basic miracles that occur each day; having true and honest friendships, giving smiles, a tender hug, or word of confidence when it is needed. You have also allowed us to cry with you, when times have felt tougher than we all ever expected. You are a wonderful student, who works hard at each assignment. You never settle for anything but your very best; which is what gives you strength each day. Congratulations on this prestigious award. (Mrs. Donegan)"

Erin Wilson


Today was relatively uneventful from a clinical standpoint. Other than for an errand run and a walk around the neighborhood, Erin stayed at home and rested. We received the final results from Erin's bone marrow biopsy yesterday. Like the preliminary results, the biopsy showed an "empty" marrow—there were no signs of either leukemia cells or good cells.

Now that we have decided what treatment route to pursue, Bret is resuming the battle with insurance companies. We have filed an appeal against our primary insurer's initial rejection of coverage—we may get a response as soon as Friday. We also expect our secondary insurer to reject our request for coverage, in which case we will file an appeal. In short, we will take whatever steps are necessary to ensure that the insurance companies make the "right" choice to cover Erin's fight for survival.


Erin had a long day today at the clinic. Her counts still are extremely low, with her white blood cell counts still being virtually nonexistent. Due to her low counts today, Erin underwent both a platelet and red blood cell transfusion. In addition, her low counts warrant another postponement of her return to Houston for her next round of clofarex. She now will likely return to Houston either June 3 or June 10.

We have now decided on our next course of action. We will pursue the transplant alternative. Erin will undergo a second bone marrow transplant at Children's Mercy Hospital in Kansas City under the care of Dr. Gilman. We informed the doctors in Houston and Kansas City today of our decision. Dr. Gilman did not waste any time, as the search for a new donor began today.


Erin enjoyed a relatively quiet Memorial Day weekend. On Saturday, she accompanied the family on a day trip to St. Louis to watch St. Teresa's Academy win the 3A State soccer championship. During her visit to St. Louis, she was able to visit our long-time friends, the Ricken family. The Rickens lost their daughter, Mary Beth, to cancer approximately 18 months ago at age fifteen. We watched with admiration as the Rickens dealt with Mary Beth's struggle. Now that we are engaged in a similar struggle, the Rickens serve as inspiration in the way they live life according to Mary Beth's motto: Life is short, laugh hard!


Erin had a busy day today at Children's Mercy. She underwent blood counts, a platelet transfusion and a bone marrow biopsy. Her white blood cell count is still virtually zero. Based on this information, we have not yet scheduled her return trip to Houston for her next round of clofarex. Regarding Erin's bone marrow biopsy done today, the preliminary results appear to be favorable. Her marrow essentially was "empty", with no leukemia cells and only a few normal cells present. Additional test results are pending and we expect to obtain more information on Tuesday.


Nothing happened today from a clinical standpoint. Erin spent a quiet, rainy day at home. She still has some slight nausea and decreased appetite. Dr. Gilman stated yesterday that these symptoms were likely due to the various antibiotics Erin is taking and not graft-versus-host disease. Tomorrow will be a fairly big day, as Erin will go in for counts, a platelet transfusion and a bone marrow aspirate.


Erin had a very short clinic visit today. Her red blood cell counts were good, and her platelets were high enough that she did not need a transfusion. Her white bloodcounts, however, still are essentially zero. As a result, she did not undergo a bone marrow aspirate today. She will now have the aspirate on Friday, no matter what. We, at this time, do not know when Erin will return to Houston for her next round of clofarex.

Bret and Christy met today with Dr. Gilman (the head of the transplant program at Children's Mercy) to discuss potential treatment options. We found the meeting to be quite helpful in evaluating the two potential treatment options. We are getting close to a decision now, and expect to make a final decision in a couple of more days.


Erin spent a quiet day at home today. Except for feeling slightly nauseous throughout the day, she feels well and is in very good spirits. We are not quite sure what the source of this nausea is—it might be one of the antibiotics she is taking or it might be a slight case of Graft vs. Host Disease.

Erin has finally discontinued taking steriods. As a result, her appetite has decreased and she has begun to lose a fair amount of her steroid weight. Erin will return to clinic tomorrow for blood counts.


Erin went to clinic today and saw Dr. Woods for the first time since she first went to Houston in March. Erin's counts are still very low. Secondarily, she had another platelet transfusion and her bone marrow aspirate was postponed once again. She will likely have her bone marrow aspirate on Friday, although we will check her counts again on Wednesday just in case.

Erin likely will return to Houston early next week for her next round of clofarex treatment. In the meantime, Bret and Christy still are researching and consulting regarding Erin's next treatment options. We will meet with Dr. Gilman at Children's Mercy on Wednesday and hope to make a final decision by the end of the week.


Erin started the day by getting Dad up at 5:00 in the morning to buy donuts at the local Krispy Kreme. They then drove to Santa Fe Trail school, where Erin personally gave each of her classmates a donut before her class's 6:00 am departure on its field trip to Branson, Missouri.

Erin spent a long day at clinic today, with both a red blood cell transfusion and a platelet transfusion. Her white blood cell count is still virtually zero. Erin was scheduled for a bone marrow biopsy today, but the biopsy was postponed because of her low blood counts. It tentatively has been rescheduled for Monday, assuming her white blood cell counts begin to recover by then.


There was no clinical activity today. Erin continues to feel good and remains in great spirits. Our house has been filled with the sounds of Erin's frequent laughter and joking over the past week or so. Erin had hoped to accompany her class on a day trip to Branson, Missouri tomorrow, but will not be able to go because her counts still are too low. Erin did, however, get Dad to promise that we would bring donuts to her class as a surprise prior to their departure tomorrow morning. The big question is whether Dad will be able to get up early enough to buy and deliver the donuts before 5:45. Stay tuned for tomorrow's update!


Erin went into clinic today for blood counts. Her counts were still very low, but not low enough to require any transfusions. She will likely have a platelet transfusion on Friday. Due to Erin's low counts, Erin's bone marrow biopsy scheduled for Friday has been postponed until next week. In addition, Erin will not likely return to Houston next week for her next round of clofarex. Her return likely will be postponed until the week of May 27.


Erin took a break from clinical activity today. Other than for a journey to Liberty for lunch at the Hardware Cafe, Erin spent the day at home. Erin visits the clinic for blood counts tomorrow. We hope to obtain some more information tomorrow regarding treatment options so that we can decide finally on Erin's next course of treatment.


Erin went into the clinic at Children's Mercy today for blood counts. Her platelets were low, so she underwent a platelet transfusion. Erin's white blood counts still are virtually at zero. In many ways this is actually a good sign because it indicates that her leukemia cells probably are not regenerating.

Erin enjoyed her first weekend back home in six weeks and is in great spirits. She cooked pancakes for the family and then accompanied Bret to pick out Mother's Day gifts for Christy. We then spent a quiet Mother's Day together as an entire family. It was especially good for Christy to have all her daughters together, as she has sacrificed so much over the last six months to make sure that Erin has received the best care possible.


Erin went into Children's Mercy today for blood counts and a platelet tranfusion. As expected, her counts are very low. Thus, we take great care to avoid crowds and only go out in public places during off hours. Despite these restrictions, Erin has been able to enjoy herself since returning from Houston. Last night, she accompanied some of Rachel's St. Teresa's friends to Winstead's for some drive-thru hamburgers and then paid a surprise visit to the Clearys (including "Old Geezer" Bob Cleary). Tonight, she travelled to Liberty for a long-awaited dinner with Granddad and Grandmother Brenton. Erin loves Grandmother's cooking!

Erin gets a weekend off from clinical activity. She will return to Children's Mercy on Monday for blood counts.


Erin and Christy returned home to Kansas City today. As opposed to her return from Seattle in February, Erin returned home this time in remission.

We are grateful for the MD Anderson Cancer Center and ILEX Oncology, Inc. for developing clofarex, which has put Erin back in remission and has given her a renewed chance for cure. We also appreciate all the doctors and nurses at MD Anderson, who helped Erin through these last six difficult weeks. We had heard from several sources that MD Anderson will go to the mat for their patients and will fight as long as their patients are willing to fight. We now know that to be true.

Finally, we are grateful to the Angel Flight Network and Jim Kingston, who so generously donated their time and resources to get Erin back home today. We are especially grateful for this assistance because of the risks Erin would have encountered by flying home in a commercial airliner while she has an impaired immune system.

Erin returns to the care of our friends at Children's Mercy Hospital tomorrow. Children's Mercy will monitor Erin until she returns to Houston for her next round of clofarex. We expect that Erin will return to Houston around May 21.


Today was a good day in that Erin was released from the hospital. Christy and Erin celebrated by enjoying a home-cooked meal at the apartment. Tomorrow should be even a better day because, weather permitting, Erin and Christy will return home to Kansas City. They will fly back courtesy of Jim Kingston and the Angel Flight Network.

We are still struggling with what clinical course of action to take next. Seattle and Houston have proposed two different courses, and each has made compelling arguments in support of their proposal. We spent the day discussing the alternatives with independent parties and hope to make a decision soon. The decision is particularly difficult because there is no standard course of action for some one in Erin's clinical situation (of course, Erin's tenacity has contributed to the dilemma, as most people in Erin's situation would have succumbed by now). Regardless of how stressful the decision has become, we are thankful that Erin is still alive, that she is once again in remission, and that we at least have some options from which to choose.


Erin has had another good day and has succeeded in making her case that she should be released from the hospital. The major issue keeping her in the hospital is the IV antibiotic she is currently on. Apparently the drug only stays stable for a few hours once it is prepared so it poses a challenge for a home health care arrangement. And, since we found an antibiotic that seems to be effective and is not turning her bright red, no one wants to dare change to another drug. Many people worked hard today to get arrangements in place to release Erin from the hospital tomorrow.

Dr. Jeha stopped by this afternoon and agreed to put the wheels in motion to have Erin back in Kansas City soon. We hope to be back by the end of the week. The length of time Erin will remain in Kansas City will be somewhat dependent upon how long it takes her white blood cell count to recover from last weeks round of treatment.


Erin experienced another good day from a physical standpoint. She has now gone 48 hours without a fever. Moreover, her latest cultures show that she has no additional bacterial infections and that the antibiotics appear to be eliminating the original bacterial infection. The clinicians believe that the source of her infection was most likely her Hickman Catheter, a not unusual source for this sort of an infection.

Erin again pushed the doctors to release her from the hospital, but to no avail. She was extremely disappointed and angry with this outcome. We do not know at this point when she will be released or when she will be able to return home to Kansas City. Her anger subsided somewhat when Dr. Fields, her doctor when she was in the Intensive Care Unit, presented her today with a case of Kraft macaroni and cheese. This gift arose out of a private joke when she was in the ICU (Dad made some macaroni and cheese for Erin when she was in the ICU only to find out it was Land o' Lakes macaroni and cheese--definitely the wrong brand!).

Mom and Dad still have not yet decided the exact next step in Erin's treatment plan. We hope to finish consulting with doctors this week, make a decision, and begin to move forward with the next step.


Erin had a good day today--she experienced no fevers and her skin rashes improved dramatically from yesterday. She is feeling so well that she has begun to push her doctors about letting her out of the hospital. The general rule is that one has to be fever-free for at least 24 hours before being released. Thus, we hope that Erin may be able to get out tomorrow—especially because that would allow Erin, Emily, Christy and Bret to eat dinner tomorrow evening together before Emily and Bret return to Kansas City on Tuesday.

Bret stayed with Erin at the hospital last night and today so that Christy could take a break from being primary care giver and spend time with Emily. Christy and Emily enjoyed a day of shopping and visiting the zoo at nearby Hermann Park. It was really good for them to spend time together—Emily really missies her mother, who has been away from home five out of the last six months. Emily finished the day at MD Anderson by playing a lively game of fusball with her new friends from Kuwait, who are our hospital next-door neighbors.


Erin spent most of today sleeping. She was fever free all day until late in the afternoon when her temperature rose and hovered at 101 degrees. The doctors decided to repeat blood cultures after much debate. A temperature of under 101 degrees is not considered fever but since she was right on the line, they decided to err on the side of caution.

Bret and Emily arrived about 6:00 this evening. Erin and Christy were glad to see their smiling faces.


Erin's fever activity began to increase this morning. At about 11:00 am, Erin experienced a very strong case of the rigors (chills and shaking) with a rapid rise in temperature. Erin asked for oxygen because she thought she was not breathing well enough. She was tested for oxygen saturation and it was well within normal guidelines but her heart rate was close to 200 beats per minute. As it turns out, Erin had four factors increasing her heart rate: fever, chills, anxiety and very low hemoglobin. Within an hour of this incident, the lab called and informed us that one of yesterday's blood cultures has tested positive for a bacterial infection. The doctors were relieved to find a source for the fevers so they could better direct her treatment. Throughout the afternoon, Erin remained fever free.

All of yesterday's cat scan results are in, and there is no evidence of fungal infection. We were all very pleased with these results. Erin kept her nurses busy today as lab results revealed that she needed gamma globulin, platelets and red blood cells. In addition, she received her final dose of clofarex for this round of treatment.

Erin and Christy look forward to the arrival of Bret and Emily tomorrow.


Much has happened over the past 24 hours. First, Erin received her third of five Clofarex treatments. About three hours after the treatment she complained of significant muscle pain. With Dr. Jeha's guidance, Christy administered escalating pain medications and Erin slept through most of the evening and by bedtime the pain was greatly reduced.

Bret and Christy met today with Dr. Chan (the head of the MD Anderson pediatric transplant group). He outlined how he would approach a second transplant. Bret and Christy left the meeting feeling grateful that a plan was developing. Since that meeting, Christy has had a phone conversation with Dr. Jean Sanders in Seattle. Seattle has proposed an alternative approach to another transplant. Seattle's recommendation involves infusing cells from Erin's original donor to see if a graft vs leukemia effect can occur. The necessary donor cells were collected and stored at the time of transplant for just these types of situations. The success rate quoted for each option was very similar . Thus, Erin, Bret and Christy have some options to consider and for that we are very thankful.

On Thursday morning, Erin woke up with a 101.6 degree fever. A fever that high automatically earns a hospital admission. Within three hours, the fever had broken without the aid of Tylenol. Dr. Jeha has ordered a number of scans today to rule out fungal infections. Erin most likely will stay inpatient for the next few days for observation. Her hospital room phone number is 713-745-8559.

© 2002. Bret and Christy Wilson.