If you wish to e-mail any of us, please click on a name below:

Erin

Rachel

Emily

Christy

Bret

 


HOME   |   LATEST UPDATE   |   ARCHIVE

6/28/2002

We received word today that Erin's transplant will be delayed a few days due to a delay in receiving all of the donor's test results. Erin will now begin pre-transplant conditioning on July 5 at the earliest, which would put the actual transplant date at July 11. We actually are pleased with this news because it means that Erin will be able to attend the Cleary's annual Fourth of July pool party!

At this point, two potential donors are moving forward with pre-transplant donor testing. The preferred donor is a 54-year old woman who is an "8 out of 10 match" and the other donor is a man in his early thirties who is a "9 out of 10 match." The donor may not be determined until the time Erin checks into the hospital for pre-transplant conditioning.


6/27/2002

For the first time in about eight weeks, Erin's white blood cell count exceeded 200. Her white blood cell count came in today at 400. Even though her platelets were not extremely low, Erin underwent a platelet transfusion today to get her through the weekend.

Erin underwent chest and sinus scans today to rule out any possible infections prior to transplant. We will receive the results of those tests on Monday at her final pre-transplant clinic visit. Even though we are still awaiting final confirmation from the donor, we still anticipate a July 8 transplant.


6/26/2002

Erin enjoyed a day off from clinical activities. She spent the day visiting with friends and stocking up on pajamas for her pending hospital stay. Tomorrow will be an early day with sinus and chest scans, as well as blood counts and a likely platelet transfusion. Tomorrow's scans should complete Erin's pre-transplant testing.


6/25/2002

We received the results from last Friday's bone marrow biopsy today. Erin's marrow is still empty and there still is no evidence of leukemia. The results of this marrow biopsy mean that we can still move forward for a July 8 transplant.

Erin visited the clinic today for a round of pre-transplant tests. The tests went smoothly—to Christy and Erin's surprise, Erin was able to go through three separate clinics and complete the testing in 90 minutes. Erin gets the day off from clinic tomorrow. She returns to clinic on Thursday.


6/24/2002

Today was a long day at the clinic, as Erin underwent both a red blood cell transfusion and platelet transfusion. Although her counts technically were not low enough to require these transfusions today, we opted to undergo the transfusions today so that Erin could undergo pre-transplant testing tomorrow and Wednesday without having to undergo transfusions on those days.

This week will be a busy week with a series of pre-transplant testing to determine Erin's readiness for transplant and to establish baselines for critical body functions that will be measured throughout the transplant process. Tomorrow, Erin will undergo an echocardiogram, EKG and pulmonary function testing.

We learned today that Erin's donor passed all necessary medical testing to be a donor. As long as Erin remains healthy, things are on the fast track for her transplant—she still is scheduled to begin conditioning chemotherapy a week from tomorrow.


6/21/2002

Erin underwent her bone marrow aspirate today, as well as another platelet transfusion. Her counts still remain extremely low. In fact, her "absolute neutrophil count" has decreased to nearly zero. As Erin's bone marrow aspirate was late in the day, we will not find out the results until Monday. We learned today that Dr. Gilman's preferred donor will probably agree to the proposed transplant schedule. As a result, we are still on for a July 8 transplant.


6/20/2002

No clinical activity occurred today. Erin continues to feel well, and she remains in good spirits. Tomorrow, Erin will undergo another platelet transfusion, as well as another bone marrow aspirate. We expect that her marrow will again be virtually empty, and we hope that it will again show no signs of leukemia.


6/19/2002

Erin's counts still remain very low. She underwent another platelet transfusion today, and her white blood cell/absolute neutrophil counts are at the same low levels of the past week. At this point we would not be surprised if Erin's counts do not recover prior to transplant because of the strength of her clofarex treatments and the weak state of her marrow. Although Dr. Gilman would have liked to see a week or two of ANC levels in the range of 500 to 1000, Erin's current low levels will not delay the transplant schedule.

We met with Dr. Gilman today, who laid out the plan for Erin's transplant. He has now selected the donor he would like to work with. The prefered donor is a 54-year old woman who is an "8 of 10" match. Dr. Gilman selected this donor over the 31-year old and 33-year old men (both of whom were "9 out of 10" matches) because this donor is slightly more of a mismatch and is thus more likely to generate the necessary "graft versus leukemia" effect necessary to fight and destroy any remaining leukemia cells. Once again, Erin's blood type will change--she changed from A- to O after the first transplant and will change to A after this transplant.

Erin's transplant schedule now is beginning to fall into place, subject to her new donor agreeing to the proposed schedule. At this point, Erin is scheduled to enter the hospital on July 2 or July 3 to begin her pre-transplant chemotherapy conditioning, with the actual transplant scheduled to take place on July 8. If things go smoothly, Erin will stay in the hospital for approximately four weeks.


6/18/2002

We are sorry to have disappointed those of you that tuned it to Metrosports tonight to watch the Children's Mercy Classic special. The footage of Christy and Erin at the clinic must have ended up on the cutting room floor! We did enjoy, however, seeing Dr. Woods' interview. This year's Classic was perhaps the most memorable of all, thanks to the participation of five of Golf's all-time greats--Arnold Palmer, Jack Nicklaus, Lee Trevino, Gary Player and Tom Watson. Congratulations to Tom Watson and all the volunteers for putting together such a successful event and for helping make Children's Mercy a first-rate institution. We are fortunate to have such an asset in Kansas City.

There was no clinical activity today, but tomorrow promises to be a big day. In addition to going in for blood counts, we will meet with Dr. Gillman tomorrow morning to go over the plans for Erin's pending transplant.


6/17/2002

Erin returned to clinic today for blood counts. Her counts essentially remained at the same low levels as last Friday's counts. She underwent a platelet transfusion, but no red blood cell transfusion. As Erin is only seven months out from her original transplant, it is hard to gauge the effect that clofarex has had on her counts. The low counts probably are due to a combination of clofarex's strength and her relatively weak bone marrow. She will return to clinic on Wednesday for more counts.

We do not yet know what effect Erin's low counts will have on her transplant schedule. We would not be surprised, however, if her low counts will delay the transplant. In the meantime, Erin remains in good spirits. She spent last weekend picking out Father's Day gifts for Dad. Erin concluded the weekend with a Father's Day dinner with the family on the patio at Garozzo's.


6/16/2002

Happy Father's Day!


6/14/2002

As expected, Erin spent a long day at the clinic where she underwent both a platelet transfusion and a red blood cell transfusion. Her white blood cell count and her "absolute neutrophil count" remained consistent with Wednesday's blood counts at 200 and 90, respectively. It now has been about seven weeks since her last clofarex treatment--clofarex has knocked her counts down like no other drug she has ever taken before. We hope its attack against her leukemia cells has been just as strong.

A film crew from Metrosports came in to the clinic today to film footage for the Childrens' Mercy Golf Classic, an annual fund raiser sponsered by Tom Watson. Kansas City area residents that tune in to Metrosports Tuesday at 6:00 pm just may get to see Erin and Christy on television!


6/13/2002

Erin spent a quiet day at home today. In addition to her normal activities of watching television, she spent the afternoon making payday bars for her friend, Chad Cleary. Erin also enjoyed going through the box of surprises she received today from the Hole in the Wall Gang Camp. She was going to attend the Hole in the Wall Gang Camp this week, but her low blood counts prevented her from going.

We received good news on the insurance front today—our secondary insurer has agreed to cover Erin's transplant. Now we can focus on the clinical aspects of her transplant. According to the bone marrow transplant coordinator at Children's Mercy, the donor search has narrowed to two potential donors—a 33-year-old man and a 31-year-old man. As far as we know, we are still working toward an early July transplant.

Erin returns to clinic tomorrow for more blood counts. We expect a long clinic visit with both a platelet transfusion and a red blood cell transfusion.


6/12/2002

Erin went into clinic today for blood counts. Her counts were high enough that she did not need any blood transfusions. We expect, however, that she will need both a platelet and a red blood cell transfusion on Friday. Erin's white blood cell counts remained constant today at 200 (2,000 to 5,000 is considered normal). But her "absolute neutrophil count" (the critical measure of infection fighting capability) increased from Monday's 76 to a whopping 96 today (1,500 to 2,500 is considered normal). We still expect her white blood cell counts and absolute neutrophil counts to increase dramatically in the next few days.

We should hear any day now from our secondary insurer regarding Erin's claim for coverage (our primary insurer has already agreed to cover Erin's transplant). Based on a reading of the tea leaves, we expect the insurance company to reject Erin's claim for coverage. In anticipation of this rejection, Bret shot a pre-emptive strike today by filing a statement explaining (politely, but ever so firmly) why the insurance company should not reject Erin's claim. We have played this game several times already and know how the game is played--we fully expect to prevail. Stay tuned while the drama unfolds!


6/11/2002

We received today the final results of Erin's bone marrow biopsy from last Friday. The results were similar to the preliminary results in that they indicated that Erin's marrow is still empty. On the positive side, they indicated that Erin's marrow is also leukemia free. Erin returns to clinic tomorrow for another round of blood tests.


6/10/2002

Erin had an encouraging day at the clinic today. Her counts, although still low, are starting to rebound. We expect that her white blood cell levels will increase dramatically over the next few days. In light of her count recovery, it looks like Erin will be on schedule to begin pre-transplant conditioning around June 25. Thus, she has about two more weeks of feeling good. We intend to take full advantage of her current good health and partake in her favorite activities—namely, going out to eat at her favorite restaurants. We are sure that a trip to Garozzo's is in the cards for next week!


6/7/2002

Erin underwent her bone marrow biopsy today. The results are preliminary but show that her marrow is still empty and that there are no signs of leukemia. We will find out more on Monday. Erin underwent another platelet transfusion today but did not undergo a red blood cell transfusion as expected. She will probably undergo a red blood cell transfusion on Monday.

We are very grateful for (but not surprised by) Kansas City's response yesterday to the blood shortage reported in Thursday's Kansas City Star. Erin is a direct beneficiary of Kansas City's overwhelming response, as she requires blood transfusions on a weekly (and sometimes daily) basis.


6/6/2002

Erin spent a quiet day at home today. Tomorrow will be a long and big day, however, as Erin is scheduled for a bone marrow biopsy. We also expect that she will undergo both a platelet transfusion and a red blood cell transfusion tomorrow. As far as we know, everything is still on schedule for a late June/early July bone marrow transplant.

We decided today that Erin will not go to the Hole in the Wall Gang Camp next week because of her extremely low blood counts. It simply would be too risky to send her now when she has virtually no white blood cells. But as one of her Hole in the Wall Gang Camp sponsors said today, "We look forward to seeing her next year!"


6/5/2002

Erin had a relatively short clinic visit today since she did not require any blood or platelet transfusions. Erin's white blood cell count is still virtually zero. Friday will be a long clinic day because we will go in early for a platelet transfusion followed by a bone marrow biopsy and then most likely a transfusion of red blood cells.

We would like to extend our thanks to Mary Kay Milligan (Karen Thoeni's sister) who packed up our Houston apartment yesterday and shipped back our belongings. Mary Kay moved to Houston last year and was a great help to us during our stay in Houston. We are fortunate to be surrounded by so many people that will do anything they possibly can to make our lives easier. Thanks to all of you.


6/3/2002

Erin went into the clinic today for blood counts. Her counts are virtually the same as previous counts—low platelets and no white blood cells. Therefore, Erin underwent a platelet transfusion today. The clinicians are looking into whether they can schedule Erin's treatments so that she can attend the Hole in the Wall Gang Camp in Connecticut next week. Erin has yet not decided whether she feels up to going.

Erin's next clinic visit is on Wednesday. She still is undergoing daily GCSF treatments, so we expect to see her white blood cell counts recover in the next week or so. Erin continues to be in great spirits. Last night she enjoyed entertaining some of Rachel's friends with her unique sense of humor.

Outstanding Sixth Grade Girl

"When this special girl entered my third grade classroom for the first time, I knew she was some one I would never forget. I won't! What a sweet smile she had on that first day of school almost four years ago, and she never lost it!! She was and extremely perceptive, caring and compassionate young girl . . . beautiful on the inside as well as the outside. She loved to have fun but never lost sight of the important things . . . not just academics but lessons of life. What a positive attitude she always displayed. I remember the celebration with pizza when she finished her long ordeal of chemotherapy . . . never once complaining EVER!!!! 'What a trouper,' I remember thinking. 'This girl is one in a million." I felt very privileged to have known her then, and I feel very fortunate to have been able to stay in touch with her since. She continues to teach me so much about life and its blessing through her brave fight and incredible perseverance to win the battle. Knowing her as I do, I have no doubt but that she will do just that!!! I have never known any one with such a zest for life, and I am sooooo proud of her. I'm sure this is too long, but it is hard to find a stopping place when trying to describe this outstanding young lady. I love her!!!!! (Mrs. Rardin)

© 2002. Bret and Christy Wilson.