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Erin

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11/30/2001

(Day 9)

It looks like engraftment may be starting. Erin's white blood cell ("ANC") counts increased from the 0 level of the past few days to a whopping 10 today (normal ANC levels range between 1500 to 7000). Although the doctors haven't really said for sure that engraftment has begun, Erin's nurse for today (Jean) insists that it has. Jean is so sure that engraftment has started that she said that we could quote her on the website!

Other than a platelet transfusion, today was uneventful. Erin spends most of her time sleeping and watching television. We did recently write a thank you letter to her donor. We are allowed to write her, but cannot tell her who we are or where we are. We will be allowed to meet her one year after transplant.

Erin's virus tests still indicate that she probably does not have a virus, although we have to wait until Monday to know for sure. In the meantime, Erin remains in isolation. While in isolation, she must remain in her room at all times and the health care providers must wear protective clothing when they are in her room. In addition, Dad can only be in Erin's room or outside the bone marrow transplant unit entirely—he may not walk around the BMT unit. These procedures are designed primarily to prevent potential viruses from spreading within the BMT unit.


11/29/2001

(Day 8)

Today has been a good (and another uneventful) day. Other than her nightly bout of nausea, Erin slept well last night and did not experience the problems of the night before. Although she will remain in isolation through Monday, her nasal and blood tests so far show no indication of a cold or any other viral infections. Dr. Sievers reiterated today that Erin is still doing "above average" and that he expects to see signs of engraftment within a few days. We want to again thank every one for the generous support we have received over the last several weeks and months. We truly have been amazed, and at times overwhelmed, by the level of help and support we have received from friends and well wishers.


11/28/2001

(Day 7)

Erin spent a restless night last night because of her mouth sores. Otherwise, today has been relatively uneventful. Erin's white blood cell counts (her "absolute neutrophil count," or "ANC") are still at zero, but should begin to recover at engraftment (see the Fred Hutchinson Transplant Process Page for a description of the transplant process, including waiting for engraftment). Although it is still early for engraftment, the doctors think we could see the first signs of engraftment in a few days. Erin has developed a very slight cough and slight case of the sniffles. As a precaution, the doctors have placed Erin in isolation for five days until they have determined that she does not have a virus. Nevertheless, Erin still feels pretty well.


11/27/2001

(Day 6)

Today has been a relatively uneventful day. Other than a bout of nausea last night, Erin continues to feel pretty well. She seems to feel better now than she has in the past couple of days. Dr. Sievers remarked that he is very impressed with how well she is doing. Erin received a small dose of chemotherapy today to control her rate of engraftment. This was the next-to-last of these treatments. The last such treatment will occur on Day 11.


11/26/2001

(Day 5)

Erin's white blood cell counts have now bottomed out at zero. This was expected and is the cumulative result of the chemotherapy and radiation that she received during the conditioning phase. Her white blood cell count should begin to recover in a few days. This recovery will be the first indication that engraftment has begun. Erin still feels well under the circumstances and continues to be in good spirits. She has now developed a daily routine, which includes two exercise sessions of walking the halls and riding an exercise bike.


11/25/2001

(Day 4)

Erin continues to do well. As expected, she underwent a platelet transfusion today. After some gentle prodding, Erin finally agreed to start taking pain medication for her mouth sores. She also wears ice packs at times to keep the swelling down in her cheeks. The nurses have noted some early signs of "graft versus host disease," such as skin rash and tingling in the hands and feet. These signs are expected and actually are viewed favorably. These signs, along with today's blood test, indicate that engraftment probably will occur earlier within the expected time frames—perhaps as early as Day 10.


11/24/2001

(Day 3)

Erin continues to do well ("above average," according to Dr. Sievers). As expected, Erin's mouth sores are getting a little worse each day and should peak about Day 10. She still has not reached the point where she is taking pain medication. Erin underwent a blood transfusion today to replenish her red blood cells, and she will likely undergo a platelet transfusion tomorrow.


11/23/2001

(Day 2)

Bret arrived today to give Christy a break. Christy will return to Kansas City tomorrow to spend a week with Rachel and Emily and will then return to Seattle on December 1. The first thing that struck Bret upon seeing Erin for the first time in three weeks was how good she looks. Her eyelashes and eyebrows have grown back and she now sports a head of fuzz and a "radiation tan."

As expected, Erin's white blood cell count is nearing zero. She will likely receive blood transfusions in the next couple of days to replenish her red blood cell and platelet counts. Other than sores in her mouth and esophagus, Erin feels great and is in good spirits. Despite encouragement to do so, Erin has not yet resorted to pain medication. She says that she doesn't want to take anything that she absolutely does not need. She is one tough girl.


11/22/2001

(Day 1)

Erin has now started a new phase—waiting for engraftment. This phase consists of monitoring, supportive treatment and managing complications while waiting for the first signs of engraftment, which should appear within 10 to 14 days.

Erin is doing well so far, with the only problem being the mouth sores mentioned in previous updates. She now takes all of her nourishment through intravenous feeding, and she is constantly spitting to avoid having to swallow. She has yet to take any pain medication, although she can do so if she wants. She received a small amount of chemotherapy today to make sure that her engraftment occurs at the right pace.

Erin got out of bed today to pick out gift items that Seattle-area merchants sent to patients at the BMT unit. She enjoyed picking out several items. But in her usual unselfish manner, she instructed Mom to take them back to Kansas City on Saturday to be given to her friends.

Happy Thanksgiving!!!


11/21/2001
Erin at Transplant, with her new marrow

and other gifts from her donor

(Day 0)--6:25 p.m. CST

Because the transplant actually occurred this morning, the doctors have determined that today is actually "Day 0" and will base Erin's treatment regimen accordingly. Erin is feeling pretty well today. Her only difficulty is mouth sores, which were expected. The sores have made it very difficult for Erin to eat, so she is now on intravenous nutrition.

We learned a little more about the donor today. It turns out that she is a nurse and that she worked in an adult bone marrow transplant facility. We also figured out from the date stamped on the transport packaging that she lives somewhere in the Eastern time zone.

(Day 0)--2:33 a.m. CST

The new stem cells arrived in Erin's room at 12: 15 a.m, Pacific time on November 21. It turns out that the cells actually were harvested earlier in the day on the 20th, rather than the 19th as we originally thought. The transplant began about an hour later at about 1:15 and was very similar to a blood transfusion. Erin was asleep during the procedure, tucked under her Santa Fe Trail blanket. Christy was in Erin's room during the transplant, while Bret and Rachel watched from Kansas City through an Internet video connection.

In addition to the stem cells, the donor sent Erin a card and some small gift items. These items arrived along with the stem cells in the same transport cooler. We cannot describe how grateful we are to the donor for giving Erin a renewed chance for life. We look forward to the day, one year from now, when we are allowed to meet the person whose selflessness saved our daughter's life.


11/20/2001

(Day 0)--9:20 p.m. CST

The stem cells are scheduled to arrive at the hospital tonight at around 10:30 p.m., Pacific time. Upon arrival, the stem cells will undergo some testing and procedures for about an hour. The actual transplant should thus actually begin around midnight tonight.


11/19/2001

(Day -1)

Today has been a day of rest and generally has been uneventful, other than one bout of nausea. As expected, Erin's appetite is now diminishing. Although she is in good nutritional shape now, the nurses will start her on intravenous feeding tonight so that they "stay ahead of the nutritional curve" instead of "trying to dig out of a nutritional hole."

No one has any details about when the stem cells will arrive tomorrow. According to Dr. Sievers, that is part of the mystery of it all—so that he doesn't slip up and tell us where they are coming from (we are not allowed to learn who the donor is or where she is from). He did say that the stem cells usually arrive late afternoon, and one of the nurses said that the cells sometimes arrive so late that the patient and family fall asleep while waiting. Thus, "Day 0" could be anywhere from 24 to 36 hours long.


11/18/2001

(Day -2)

Erin has now completed the conditioning phase and is through with the radiation and high-dose chemotherapy. Other than a slight bout with nausea last night, she has been doing pretty well. The nurses were quick to give her medication to deal with the nausea and will spend tomorrow monitoring her hydration levels. Christy is doing well too. She takes things minute by minute and keeps busy reading and attending to Erin's needs.

Tomorrow will be a day of rest for Erin and should be uneventful. Tomorrow will, however, be a busy day for some one else: A 36-year-old woman somewhere in the United States will enter a medical facility to have her stem cells collected and delivered overnight to Erin. This woman is truly an example of what is good in the world.


11/17/2001
Dr. Sievers

(Day -3)

Erin has now settled into the hospital and has completed the first of her high-dose chemotherapy sessions. She will finish her chemotherapy tomorrow. Other than being tired, she is feeling pretty well. Her attending physician during most of her hospital stay will be Dr. Sievers.

Erin's hospital room is nice, and she says the food is pretty good (even though her appetite has diminished and her sense of taste has been dulled by the radiation treatments). The hospital's internet connection is not particularly good, so it may be challenging for Erin and Christy to answer e-mails. Their hospital telephone number is 206-526-2032.


11/16/2001

(Day -4)

The pain and fever that Erin experienced yesterday have gone away. Erin is feeling much better today and is in good spirits, especially since she has now completed her radiation treatments. She will check into the hospital tomorrow at 8:30 to begin her high-dose chemotherapy treatments.


11/15/2001

(Day -5)

Today has been a difficult day, as the side effects of the radiation really have begun to kick in. Erin is very tired and has been sleeping all day between her radiation sessions and her clinic appointments. She has lost her appetite and is taking extra intravenous fluids to combat dehydration. She has developed a slight fever and is experiencing pain in her chest and shoulder. The doctors are monitoring the fever situation very closely and are giving her morphine for her pain. We are glad that tomorrow will be her last day of radiation.


11/14/2001

(Day -6)

Erin is now halfway through her radiation treatments, with two more days to go. She is feeling fairly well, although she is starting to experience some fatigue and dehydration. Erin will check into the hospital for high-dose chemotherapy on Saturday. She will likely stay in the hospital through December 20. Her address during her hospital stay will be: Erin Wilson,Hematology/Oncology Unit,P.O. Box 5371, MS CH-58,Seattle, Washington 98105-0371

Today, Erin wore the t-shirt that the Santa Fe Trail School made for her—it was a big hit with the nurses at the clinic! Erin has enjoyed all the e-mails and good wishes. She wants every one to know that even though she has been too tired to answer all her e-mails, she reads each one and appreciates all the kind and encouraging messages.


11/13/2001

(Day -7)

Today was Erin's first day of the conditioning phase (see the Fred Hutchinson Transplant Process Page for a description of the transplant process). She underwent two separate radiation treatments at the University of Washington. The radiation treatments will continue for three more days. The treatments went well, and Erin is in good spirits.


11/12/2001

Erin begins the conditioning phase tomorrow (see the Fred Hutchinson Transplant Process Page for a description of the transplant process). Erin's first radiation treatment will be tomorrow morning at 7:30 and the afternoon treatment will be at 4:00. She will be on several types of medications—some to control nausea side effects and others to prevent infections.

Erin and Christy spent last night watching the Wizard of Oz. Like Oz, Seattle is known as the Emerald City, which prompted Christy and Erin to sing "If I only had new blood." As Christy says, "Well, our girl from Kansas is in Oz—hopefully the wizard will be good to her. Unfortunately, this won't be as easy as clicking our heels together and saying 'There's no place like home.' "


11/9/2001

The schedule for Erin's transplant is now set. She will begin the conditioning phase on Tuesday, November 13 (see the Fred Hutchinson Transplant Process Page for a description of the transplant process). The conditioning phase will begin with four days of total body irradiation (two radiation sessions per day) and will end with two days of high dose chemotherapy. After one day of rest, she will have the transplant on November 20. The radiation will be given on an outpatient basis at the University of Washington Medical Center, and the chemotherapy will be given on an inpatient basis at Children's Hospital & Regional Medical Center. Erin will likely check into the hospital on the 16th or 17th and will stay through mid- to late-December.


11/8/2001

Erin is near completion of the preparation phase. Tomorrow, we will have a data review session with Erin's medical team to review the results of her testing and to set a final transplant schedule. At this point it looks like we are going to move the transplant schedule up one day so that the conditioning phase of radiation and chemotherapy begins on Tuesday the 13th with the Transplant occurring on the 20th. This change was made to accommodate the donor's schedule. We will know the schedule for sure tomorrow.

Christy is getting to know Seattle quite well after carting Erin around the past week--she has only gotten lost a couple of times. As Christy says, "Thank goodness they built that space needle. If I can see it, there is hope in finding my way!"


11/7/2001

Although still sore from yesterday's surgery, Erin is beginning to feel better. At this point, it looks as if Erin's cold will not cause a delay in the transplant schedule. An MRI test, however, revealed today that she has a slight sinus infection. We do not believe that this will cause a delay, but we should find out for sure on Friday. Erin met for the first time today with Dr. Woolfrey, one of her attending physicians who directed her donor search. Erin will start school tomorrow at the "Hutch School"—a school run by the Fred Hutchinson Cancer Center for pediatric patients and children of adult patients.


11/6/2001

Erin is recovering from today's surgery to replace her existing catheter with a "Hickman" catheter. Although the surgery went well, she is tired and not feeling particularly well. We have not yet found out whether the cold Erin had last week will cause a delay in the transplant schedule. We should find out tomorrow.


11/5/2001
Victoria, British Columbia

Erin resumed the preparation phase testing today after a weekend of sightseeing in the Pacific Northwest. She and Mom and Dad visited Mt. Ranier on Friday and Victoria, British Columbia on Saturday and Sunday. Erin really enjoyed Victoria, where she saw a killer whale on the ferry ride to Victoria and where she underwent some more "retail therapy" (the shopping was particularly "therapeutic" in light of the favorable Canadian currency exchange rates). Dad has now returned home to Kansas City, leaving Erin with Mom in Seattle through November 24.

Tomorrow will be a big day for two reasons. First, Erin will undergo surgery to replace her existing portocatheter with a Hickman catheter. The "Hickman" will allow the healthcare professionals to draw blood samples and administer chemotherapy without having to stick Erin with additional needles and to infuse the donor marrow. Second, we will find out tomorrow if the cold Erin caught ten days ago will require that the transplant be delayed.

Mt. Ranier

11/1/2001
Seattle Cancer Care Alliance

The preparation phase continued today with various tests and meetings with social workers at the Seattle Cancer Care Alliance outpatient clinic. The preparation phase will continue for another 12 days (see the Fred Hutchinson Transplant Process Page for a description of the various phases of the transplant process). We spent some free time this afternoon undergoing "retail therapy" (shopping) and sightseeing at Whidbey Island.

© 2002. Bret and Christy Wilson.