June 3, 1997

Dear Pat,

I hope that you are continuing to have good days and thank you for remembering Jan in “Our Hope”. It really was a comfort to know that so many people were praying for us. Jan fully intended to write you concerning her transplant but was just not able to do so. I will do my best for her.

As you know, Jan was diagnosed with Cronic Myelogenous Leukemia on June 10^th, 1994, the day Alister was born. When Jan’s leukemia began to accelerate in December 1995, Dr. Lewis, Jan’s Oncologist/Hematologist, recommended she go to the M.D. Anderson Cancer Center in Houston, Texas for an evaluation. Jan and I flew out in January, 1996 and her acceleration was confirmed. Without any treatment, the doctors gave her only 2 to 4 months to live. Prior to this time Jan’s leukemia was kept in a drug-induced remission for 18 months using Interferon and Hydrea drug therapy. Since there had been no 6-antigen non-related matches found on the national or international registries, the doctors wanted Jan to try an intense chemotherapy treatment consisting of 3 drugs to be given by IV for 5 days. Jan elected to have this procedure done in Jackson, Tennessee, at our local medical center. The doctors hoped that this procedure would force Jan back into the less severe chronic phase buying her more time hoping a donor could be found.

On January 19^th, 1996 she had a double life port put in so she could receive her chemotherapy and medications. She spent 40 days in the hospital, 35 of them in isolation. She was able to have a support person with her at all times and could receive visitors when she was up to it. She lost all of her hair, had terrible mouth sores too; she lost her appetite and developed a total body rash besides constant vomiting and nausea. Much of this time was a blur to her as she slept a lot during her worse times. We learned to take 1 hour at a time and 1 day at a time too. Finally, after several weeks Jan’s body began producing enough white cells so she was able to go home.

Jan and I went back to Houston in March 1996 and sadly enough, new tests showed that her Leukemia was still accelerating. The doctors told us at that time that Jan’s only hope was a transplant. They would have used me as her donor there and then but they needed antibodies and their last 2 batches had been contaminated and they didn’t know when they would be receiving another batch. The doctors suggested we go to Richland memorial Hospital in Columbia, South Carolina as Richland had been having a good success rate using partially mismatched related donors. While plans were being made at Richland I took Jan, Alister and Mom to Ocala Florida, where we grew up and where Mom lives, for a 2 week vacation. Jan enjoyed herself so much getting to see her friends again.

We had her first testing done at Richland in April 1996. Mom and I were tested as potential donors and even though mom matched 4 out of 6 antigens and I only matched 3 out of 6, the doctors wanted to use me because I was younger. There had been some donors in their 60’s according to the doctors but I was their recommended donor in Jan’s case.

Jan was accepted into the transplant program. We were delayed a few times, as Jan had to be free of infection before she could undergo radiation and chemotherapy. In preparation for the transplant Jan had to have 2 root canals done and had to take antibiotics for a large mouth ulcer.

We left Jackson on July 5^th, 1996 for Richland to undergo the transplant. First of all Jan had her double life port removed and a triple Hickman catheter put in July 8^th. She began transplant conditioning at Richland on July 9^th. When the transplant process began she underwent 3 days total body radiation and then 6 days of intense chemotherapy to completely kill her white blood cells and immune system to be ready for the transplant July 19^th. During her conditioning she was hooked up to IV’s most of the time and felt ok, in her words.

As the donor, I was a little apprehensive and I’d only been in the hospital once as a child to have my tonsils removed. Jan assured me that I’d like my warm blanket and they gave me something to help relax me through my IV. I was admitted early on July 19^th for the procedure, which took only a couple of hours to complete. I was put to sleep and the doctor extracted 1500 cc’s of marrow and fluid from punctures in both sides of my hips. They just taped the sites, closed them up and put several layers of gauge bandages over my hips. Several days before the procedure I had given 1 ping of blood which was given back to me during the procedure. Of a long page listing the possible side effects that I could have, I only had anemia. My red count dropped from 12.5 to 7.5. I took iron pills for 3 months and ate all the iron rich food that mom forced me to eat. Within 2 weeks I felt fine and the doctors told me that my body should replace the marrow I had donated in 6 weeks after the procedure. After all, if big “he-men” donors normally needed 4 units of blood after they donated, I was entitled to a little anemia.

My bone marrow as processed throughout the day to extract the mature T cells. Jan received my marrow, which they placed in a little plastic bag decorated with little flowers and “happy birthday” that evening through a 2-hour drip in her IV line. Jack, his parents, Alister, Mom and I were with Jan during the transplant. We had scripture reading, prayers and sang.

The two weeks after the transplant were the worse time for Jan. She felt awful all the time. The doctors said she was experiencing the effects of everything she’d had up to that time. She had mouth scores, lost her hair, nausea, vomiting, no appetite, etc. The Richland staff was always on top of things and gave her medications to combat her side effects and numerous other medications to fight infection, to encourage engraftment, replace what her body had lost due to her treatment. All of this was done through her Hickman Catheter. At times she had up to 9 medications dripping at once. On day +13, tests showed that Jan’s bone marrow had started to engraft. During her hospital stay she spent most of her days and all of her nights hooked up to IV’s. She was weaned gradually to pill form medication and had to be free of fever and able to eat before she could be released. When her white count reached an acceptable level on day +27 she was able to leave the hospital and go to the apartment we had rented.

We chose the apartment from an approved list given us by Richland because the apartment had to meet certain specifications; vinyl furniture, no drapes, deep cleaned carpet, freshly painted walls, clean air vents, and more. The apartment had to be cleaned twice a week with Jan’s bathroom cleaned everyday. Everything had to be sprayed with a germ killing spray. Jan was not able to have any live flowers or plants. Clean linens were of the utmost importance, as Jan had no immune system. We also bought 2 room hepa air filters to keep the air as dust free as possible.

Jan returned to the clinic 3 times each week to be checked. She received blood, platelets and other IV’s as necessary. As she grew stronger she went twice a week. She received several IV’s daily at the apartment plus taking 40+ pills, Mom was the pill pusher and took care of the IV’s. Jan’s catheter had to be flushed daily, I learned how to draw up the saline and heparin and learned how to hook up the IV’s as Mom’s backup but with Mom’s background in nursing, I always felt better with her doing it.

After Jan had gotten used to the routine at the apartment, Alister came to stay for 6 weeks. He was the best medicine in the world for Jan. Jack came over as often as his work schedule permitted and Jan sure enjoyed his visits too.

Jan had to stay in the Richland area for approximately 100 days post transplant. She was able to go to services during part of her stay. The congregation prepared the nursery for her by cleaning and spraying everything and she had the room by herself. Her communion was prepared separately to avoid germs.

Whenever Jan left the apartment she had to wear a mask but could take it off on the floor at the clinic. When Jan felt up to it we would go for late afternoon rides and did go to the mall a few times during non-busy hours. At the mall we’d push Jan in the wheel chair and she enjoyed her outings very much.

Looking back over the last 3 years, it would have been overwhelming without the love, prayers and support of family, friends and Christians. Jan told me that the transplant was “doable” with the Lord’s help, and by taking one day at a time she was able to get through it all. She kept her spirits up and made the best of each day.

When we returned to Jackson, Jan saw Dr. Lewis weekly and she continued to be platelet and blood dependent, which was normal for condition. She received her platelets and blood at the hospital and her IV’s at the clinic plus she was taking 40+ pills daily.

Jan had to have a lot of help because she was very weak. She had not regained her strength caused by the side effects of all she’d been through. She was so glad to be back in her home and did small projects whenever she was able. Mom stayed in their home for several months helping Jan.

Before Jan came home to Jackson, ladies from church cleaned the house from top to bottom and had the upholstery and carpet cleaned professionally. She continued to run the hepa filters to keep the house as dust free as possible. The house was to be cleaned twice a week for a year with Jan’s bathroom was cleaned and sprayed daily.

Jan had very limited use of the kitchen because she couldn’t handle raw meet, and fresh vegetables had to be thoroughly cleaned before she could touch them. She was restricted from eating certain foods and couldn’t eat at restaurants that had food bars or food that had been sitting under lamps. Leftovers had to be discarded after the 2^nd day also.

Jan was able to attend services from time to time. The back classroom at our congregation was sprayed with a germ killer and she would sit by herself and she would stay away from the crowds. Being able to go to services and be with other Christians was the highlight of her week.

Jan was able to do some Christmas shopping in early November. She had all her gifts bought and wrapped by Thanksgiving. She wanted so much to be home for the holidays and the Lord blessed her by letting it happen.

Fatigue and nausea were Jan’s major complaints. At her 6 month checkup in January, 1997 at Richland the doctors told Jan she might just have to live with chronic fatigue, but thought a lot of it was due to her medication. They were beginning to taper her IVIG and would have tapered more medications at her 9-month checkup, which could have been done in Jackson, as it was just blood work. She was due to have another bone marrow aspiration at her year checkup at Richland and then have her immunization at 18 months post transplant with yearly checkups thereafter.

The facilities at Richland were just wonderful. Jan had a nice spacious well-lighted room. Each patient was required to have a support person at all times and it took Mom and I both to take care of Jan’s needs. Each room had a couch that made into a bed, guest trays for all meals and snacks were provided. There was a kitchen, laundry facility and numerous support groups. The doctors and staff were just great too. They took such an interest in each patient and their families. I would highly recommend Richland Memorial.

The last week in January 1997, Jas was beginning to have more fatigue and developed a hacking cough. Her doctor gave her cough medicine but after a week of no improvement he decided to have an X-ray taken. Jan’s red count was down to 8.4 so he thought part of the fatigue was due to the fact she needed blood.

She went to the hospital on Tuesday, February 4^th for blood when Dr. Lewis told her she had a spot of Pneumonia on her lung. She was to stay in the hospital overnight. Her condition began to worsen and she developed a virus. It was becoming more and more difficult for Jan to breathe even though she was on oxygen. Every test done to determine what the virus was came back non-conclusive. Jan was given large doses of broad-spectrum antibiotic. By Monday, February 10^th, Jan’s condition had deteriorated to the point that Dr. Lewis decided to do an open lung biopsy. This procedure was done on Tuesday, February 11^th. Jan was put on a ventilator, kept sedated and paralyzed as not to cause any additional stress on her body. She was weaned from 100% oxygen to 60% but she never came off the ventilator. She held her own for a couple of days before her organs began to fail. She began hemorrhaging and Dr. Lewis gave her blood transfusions but was unable to stop the hemorrhaging.

On Wednesday, February 19^th, 1997, Jan’s condition worsened and we knew she wasn’t going to make it. The ICU nurse let Mom, Jack and I take turns being with Jan during the day with other family members coming in during regularly visiting times. Jan took a turn for the worse around 5pm and died shortly before 7pm with her family at her side. She was finally at peace and in God’s care. The date, February 19^th was exactly 7 months after her transplant.

She fought a long, courageous battle and knew that a transplant was her only hope for a cure. She was originally given a 30% chance of survival, which she willingly took. She wanted most of all to live to raise her baby. There are bone marrow transplant success stories and we all wanted Jan to be part of that number.

Jan said she wanted to have an autopsy done if anything happened to her so that she could help others. Dr. Lewis told me that the autopsy results showed that the virus was non-specific and they were unable to grow cultures. He said this happens in about 70% of the transplant cases. Her results were sent back to Richland and Dr. Lewis assured me that Jan’s results would be helpful to others.

Being a donor was such a small thing to go through with minimal discomfort. To save someone’s life I’d do it again in a heartbeat.

I hope that this letter will be of help to others.

In Christ,

Judy Lewis, sister of Jan Reese