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Erin

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3/31/2002
Erin's Jet

We have arrived in Houston. After a pleasant flight to Houston, we were picked up at Hobby Airport by our driver, Moses, who joked that we had to settle for him because Jesus was too busy today (Easter Sunday). Erin likes our apartment here in Houston. It is bigger that our Seattle apartment and was fully stocked on our arrival with groceries provided by a local church. Erin also has decided that she likes Houston in general—particularly the sunshine and warm weather. One thing that we have already noticed is that Houstonians are extremely proud of the MD Anderson Cancer Center, which is one of the world's leading cancer centers. We finished the day by exploring Houston and the Texas Medical Center complex and then going out to dinner.

Our day starts early tomorrow--we are supposed to be at MD Anderson at 7:00 tomorrow morning. Erin will undergo a spinal tap and bone marrow aspirate and will meet Dr. Jeha (pronounced like Jayhawk without the k). If things go well, Erin will begin treatment tomorrow.

Embarking for Houston
Erin and Christy enroute to Houston

3/29/2002

Today has been another overwhelming day. Erin began the day with breakfast with friends and then joined the Santa Fe Trail sixth grade for pizza generously donated by Pizza Shoppe. Erin's classmates sent her off to Texas by singing "Happy Trails to You" and giving her several gifts, including a "Don't Mess with Texas" pillow case. She then returned home to a steady stream of visits from friends and well wishers. Erin finished the day with a family dinner at Garozzo's—her favorite Italian restaurant.

Erin was lent a special item today to take to Houston—a cross that has been blessed in Rome and contains splinters from the cross Jesus died on. We are very grateful for all of the overwhelming help and support we have received this past week.

Cheerfulness is . . .

Getting home soon,

Having no leukemia,

Waking up in the morning after a good night's sleep.

Bryan Harris, SFT sixth grade


3/28/2002

Today has been another busy, but uplifting, day as we prepare for Erin's trip to Houston. Ignoring Bret's protests that he needed to drive the van to Houston so that Christy and Erin had transportation there, Mrs. Donegan (Erin's friend and teacher) insisted that Bret was not going to drive to Houston and that he was going to fly with Christy and Erin on Sunday. To that end, she simply picked up the phone and called auto dealerships in the Houston area until she found one that volunteered to furnish a vehicle at no charge during Erin's stay in Houston. Bret has now given in and will fly to Houston on Sunday with Christy and Erin (he is particularly relieved that he does not have to stop overnight in Oklahoma to watch the Final Four semifinal round). We simply have been overwhelmed and touched by all of the support and help we have received.

We now have finalized our lodging situation. Our Houston address and phone number will be: Bret, Christy, and Erin Wilson, 12303 Gulf Freeway, Apt., 1703Houston, Texas 77034, phone: 281-484-4596

After perusing the Yahoo Maps website, Erin was particularly pleased to find out that the apartment is near some of her favorite restaurants—Olive Garden and International House of Pancakes in particular.

Erin is leaving for Houston with great conviction that this will work. Interestingly, she never believed in the transplant and was on record a number of times that the transplant would not work. We hope and pray that she is right again.


3/27/2002

Today has been a busy day, as we have been preparing for Erin's journey to Houston this weekend. We have been busy finalizing our Houston lodging situation, transferring medical records to Houston, making arrangements for Rachel and Emily, and finalizing travel arrangements. Thanks to the generosity of some friends in the Kansas City corporate community, Erin and Christy will probably fly down to Houston on Sunday on a corporate jet. Bret will leave for Houston on Saturday (after the Kansas Jayhawks play their Final Four semifinal game, of course) with the van and our Houston household items. Bret will then return to Kansas City on Tuesday, courtesy of the Angel Flight network.

Erin's social calendar has been packed with visits and meals out, her favorite activity. She really enjoyed spending a half day at school yesterday, as well as dining out tonight at Houston's with Ms. Donegan, Ms. Thoeni, and friends. She basically has lunches and dinners planned out for the the rest of the week.

Many people have asked what they can do or give to be of help. Erin really does not have any material needs or desires. Yet, as readers of the website can probably tell, Erin really enjoys talking to and going out to eat with friends. Thus, two items come to mind: gift certificates to restaurants (particularly restaurants in the Houston area, such as Carraba's, Houston's or other casual restaurants) and long-distance phone cards. Erin has really enjoyed restaurant gift certificates over the last few weeks, and the phone cards were a great help when we were in Seattle.


3/26/2002

We are Houston bound. Erin's leukemia cells did not contain the antigens necessary for us to pursue the type of treatment Dr. Woods wanted to pursue in Kansas City. Thus, Erin will participate in a clinical trial at the MD Anderson Cancer Center in which she will be treated with a new drug called clofarex.

Thanks to the efforts of Dr. Woods and the rest of the CMH oncology team, Erin already has been accepted to participate in the clofarex clinical trial. In addition, several other details (like finding a furnished apartment in Houston) already have fallen into place. Although we do not yet know all the details of Erin's treatment regimen, we expect that she will receive treatment on an outpatient basis and that she will be in Houston for about four to six weeks. We will leave for Houston on Saturday, settle in to our new Houston residence on Sunday, and meet with Dr. Jeha at MD Anderson on Monday morning to begin treatment.

Erin has now recovered from yesterday's disappointment and is ready to continue the fight. After all she has been through—five rounds of chemotherapy, two rounds of radiation, and a complete bone marrow transplantation—she still wants to live and is still fighting. She truly is one incredible and brave twelve-year-old girl.


3/25/2002

We received disappointing news today. The blasts in last Thursday's blood counts turned out to be leukemia cells after all. Moreover, the number of leukemia cells in Erin's blood have increased significantly from last Thursday. Thus, Erin's last round of chemotherapy did not work as we had hoped.

Despite the discouraging news, the battle is not over yet—Dr. Woods still has a few more tricks up his sleeve. The doctors are looking at today's bone marrow sample to determine if Erin's leukemia cells contain any "antigens," which are markers that differentiate Erin's leukemia cells from all of her other cells. If her leukemia cells contain these antigens, the doctors will give her drugs that selectively seek out and destroy these leukemia cells. We will find out tomorrow whether Erin's leukemia cells contain the necessary antigens.

If Erin's cells do not contain the necessary antigens, Erin will likely head for the world-renowned MD Anderson Cancer Center in Houston, Texas. There, she would participate in a clinical trial for a new drug that has shown encouraging results for patients like Erin. If we end up heading to Houston, we could be there by the end of this week or the beginning of next week. Thus, tomorrow will be another big day in that it will determine our next course of action.

One encouraging factor is that Erin is in very good physical condition, which will allow the doctors to pursue the aggressive courses of treatment mentioned above. Although Erin was down after today's news, her spirits began to pick up tonight. We expect that she will return to her normal fighting spirit by tomorrow.

Patience is . . .

Waiting for stoplights

Waiting for school to be out

Waiting in line at the pool

Waiting to go home

Good luck, Erin

You will make it

John Campbell, SFT sixth grade


3/21/2002

Erin went to the clinic for blood counts today. Overall, her counts were favorable other than for one possible exception—her counts indicated that her blood contained 3% "blasts." "Blasts" are immature white blood cells that usually are a sign of leukemia. The clinicians at this point do not believe that Erin's blasts are leukemia cells. Rather, they believe that the blasts are a sign that her new marrow is working hard to regenerate new blood cells. They have seen this phenomenon before with other patients who have undergone GCSF treatment and heavy chemotherapy. We will know more on Monday or Tuesday after Monday's blood counts and bone marrow aspirate.

Erin continues to feel good and is doing well from an overall physical standpoint. Her days are filled with social activities and visitors. She really enjoys visiting with Mrs. Donegan and Mrs. Thoeni, two of her teachers at Santa Fe Trail School. Mrs. Donegan and Mrs. Thoeni are more than just Erin's teachers—they have become two of her best friends and biggest supporters. She often spends hours visiting with them, trading recipes and recounting her favorite episodes of "Trading Spaces."

Erin has also received a great deal of love and support from the Santa Fe Trail sixth grade class. Upon her return from Seattle last month, a book expressing her class's heartfelt love, concern and support was waiting for her. We will post some of the book's touching entries from time to time:

Erin

I miss you now

I wish you would get well

I really want you to come home

Please miracle, miracle please come true.

Mabel Young, SFT sixth grade


3/18/2002

Erin had another good clinic day today. Her white blood cell counts have now recovered to a level that allows her to discontinue the dreaded GCSF shots. Dr. Woods tentatively has scheduled a bone marrow aspirate for next Monday to determine whether Erin is back in remission. We will find out for sure after Thursday's blood tests whether the bone marrow test is still on for Monday.

In addition to the favorable blood tests, Erin has shown little if any graft-versus-host disease symptoms so far. Thus, Dr. Woods was also able to lower Erin's steroid dosage for the time being. We now essentially live from blood test to blood test, waiting to see whether Erin's leukemia has returned. Each test that comes back favorable is a small victory, giving us more time to enjoy each day as it comes and getting us one small step closer to being able to try another bone marrow transplant.


3/14/2002

Erin had another good day at clinic today, as her blood counts did quite nicely. Her white blood cell counts have recovered from last Monday's very low levels and her red blood cell counts continue to be good. Her only low counts are her platelets—she will undergo another platelet transfusion tomorrow. There continues to be no signs of leukemia cells in her peripheral blood. To celebrate her good counts, Erin and Mom and Dad went to Garozzo's Ristorante for dinner (instead of the Garozzos bringing dinner to us).

Erin has been in pretty good spirits lately. She enjoys accompanying Mom on family errands and has been taking daily walks to take in the unseasonably warm spring weather. Her favorite pastime, however, is eating out at her favorite Kansas City restaurants. Tonight she scheduled a dinner out with her Granddaddy Wilson for March 24 at the Grand Street Café—another one of her favorites!


3/11/2002

Erin had a good day at the clinic today, as there still are no signs of leukemia cells in her peripheral blood. Erin's counts are very low now. She virtually has no white blood cells and very low platelet levels. She underwent a platelet transfusion today to get her platelets back up. We will wait for her white blood cells to come back on their own with the help of her "GCSF" shots. In the meantime, we will take extra precautions to protect her from infections until her blood counts return to normal.

Erin had a busy social calendar this weekend. Coach Egner, the varsity basketball coach at St. Teresa's Academy, stopped by with well wishes from the STA basketball team and a "kachina" doll (a doll made by native Americans to ward off evil spirits). Erin also had dinner with family and friends at a Japanese steakhouse--she particularly enjoyed watching our cook try (without success) to flip shrimp into Emily's mouth.

Finally, Erin enjoyed the surprise box of gifts she received today from our friends at Option One Mortgage Corporation. She particularly liked the pajamas Option One sent her--she changed into them immediately and wore them the rest of the evening.


3/8/2002

Erin had a good day at the clinic today, as there still are no signs of leukemia cells in her peripheral blood. Erin's counts are very low now. She virtually has no white blood cells and very low platelet levels. She underwent a platelet transfusion today to get her platelets back up. We will wait for her white blood cells to come back on their own with the help of her "GCSF" shots. In the meantime, we will take extra precautions to protect her from infections until her blood counts return to normal.

Erin had a busy social calendar this weekend. Coach Egner, the varsity basketball coach at St. Teresa's Academy, stopped by with well wishes from the STA basketball team and a "kachina" doll (a doll made by native Americans to ward off evil spirits). Erin also had dinner with family and friends at a Japanese steakhouse--she particularly enjoyed watching our cook try (without success) to flip shrimp into Emily's mouth.

Erin went in to the clinic today for blood counts. Her counts were good in that there were no signs of leukemia in her peripheral blood. We expect that her blood counts will decrease to very low levels in the next week as a result of the past week's chemotherapy.

Erin spent a quiet Friday night with Dad watching one of her favorite television shows—Who's Line Is It Anyway? Having been apart for most of the last four months, Dad makes a special effort to spend lots of quality time with Erin. He comes home often for lunch and spends his evenings with her clowning around and watching her favorite television programs.


3/7/2002

Erin was in good spirits today. She went shopping with Mom and visited Father Ron to deliver some Seattle treats. Father Ron then gave her a personal tour of the newly refurbished church hall at Queen of the Holy Rosary Church. She also enjoyed several visitors to our house. She remarked to Mom that the only time she feels bad is when she sees that Mom and Dad are upset on her behalf.


3/6/2002

Erin is now back at home. We enjoyed sitting down for dinner as a family for the first time in a long time. Erin will begin taking "GCSF" (Growth Colony Stimulating Factor) shots tonight to help her blood counts recover more quickly and thus lessen her exposure to infections. Our neighbor, Lois Moushey, will again come over to administer the shots on a daily basis.

Probably the biggest problem Erin is facing at the moment is keeping her spirits up. She has had a few bouts of depression and anxiety lately, as the seriousness of her health situation has sunk in. We are working to keep her spirits up by encouraging visitors, engaging in family activities and getting her out and about. Despite these low points, Erin is more resolved than ever to keep up the fight.


3/5/2002

Erin is still on schedule to be discharged from Children's Mercy tomorrow. Her blood tests continue to indicate that she is doing well so far and that the chemotherapy is making headway against her leukemia cells. We will not find out if she is back in remission, however, until she undergoes a bone marrow aspirate in a few weeks.

Erin received a special surprise today. Several artists at Hallmark Cards, where Christy works, gave Erin several items of original artwork and other gift items. We appreciate all the support we have received from our Hallmark friends. We are grateful for all the gifts and well wishes as well as the flexibility Hallmark has granted to Christy in helping Erin in her fight.


3/2/2002

Erin now is about halfway through her hospital stay at Children's Mercy. She is scheduled to return home on Wednesday. So far, the chemotherapy seems to be working, although it is still very early to really tell for sure.

Erin continues to be in good spirits and has enjoyed many visitors during her hospital stay. Quite frankly, she has been a real hoot and a holler. Last Saturday night we thought we might get kicked out of the hospital for making so much noise and laughter. Erin was the life of the party, whether it was asking Rachel to "spill the beans" about her social life or doing her imitation of the Viagra commercial she saw on Canadian television while in Seattle. In addition, Erin announced to the nurses that she is entitled to senior citizen status on the floor because she has been a CMH resident off and on for seven plus years—longer than most of the nurses have been at CMH!


3/1/2002

Erin is now back at Children's Mercy Hospital, undergoing chemotherapy on an inpatient basis for the next six days. Erin is permitted to have visitors as long as they do not have cold, flu or respiratory symptoms. Thus, visits are welcome and encouraged during Erin's hospital stay.

In an unusual twist, Erin actually enjoyed her dinner tonight at CMH. That is because the dinner consisted of wonderful Italian food that the Garozzo family brought over to our house last night. The Garozzos are friends of Rachel's from St. Teresa's Academy and own Garozzo's Ristorante, one of the finest restaurants in Kansas City. Garozzo's is one of Erin's favorites—we dined there just before Erin's departure to Seattle to wish her luck, and she has been looking forward to returning there ever since. Thus, Erin was particularly delighted with this surprise. Grazie Mille!

Erin is in good spirits these days, laughing and joking and visiting with family and friends. In many ways she is the rock of our family. She does not like to see people getting upset on her behalf and worries about how her illness affects her family. In particular, she enjoys picking out and giving gifts to friends and family. She reminds us in many ways of Mary Beth Ricken, our friend from St. Louis who passed away from cancer a little more than thirteen months ago at the age of fifteen. Mary Beth is an inspiration for this website in that we have followed her family's example of providing updates over the Internet (www.ricken.org). Like Mary Beth, Erin's first concern is for others.

© 2002. Bret and Christy Wilson.