Janie's Story
written by mom Tamara

Janie was born on September 26th, 1996. She was the completion of our family, having a newborn daughter and a 6 year old son was the best feeling for us. Janie was a very healthy infant, only having to visit the doctor's office once for a cold.

Sometime in early August of 1999, Janie fell down the stairs at our house. She was scared, but did not show any signs of an injury. About 2 weeks later she started to limp. Janie was running a very low grade temperature off an on and she was not eating as much. I thought this was normal for a 2 year old's eating habits. I took her to the pediatrician's office and explained about her fall down the stairs, limping and other symptoms. The doctor checked out her legs and sent us for x-rays. Nothing was found and we were told to come back in a week if nothing changed and they would send us to an orthopedic doctor.

Over the next week things were getting worse. Janie now had to actually hold on to things to walk. I called the doctor's office and got another appointment asking for blood work to be done before we were to see an orthopedic. On September 12th, 1999 we went for the 2nd appointment. We saw the nurse practitioner, who did a complete exam and asked about the bruises on Janie. She was concerned with something in Janie's belly and requested another doctor come in and take a look. They then ordered some blood tests. I was told that Janie had an enlarged liver and spleen and that she was anemic, they were going to call the Brenner's Children's Hospital in Winston Salem. The nurse practitioner came back in and said that we had an appointment at the Children's Hospital the next day and that they would be doing some tests for a malignancy. At that moment our lives had changed.

The next day at Brenner's Children's Hospital they confirmed that Janie had Acute Lymphocytic Leukemia. All I could associate with Leukemia is that all your hair falls out and you are sick a lot. Janie started treatment that same day. We stayed in the hospital for 4 weeks. During this time she was given the induction phase of the treatment protocol. Janie had
an infection, that is what kept her in the hospital so long. Life was really turned upside down. I stayed with Janie and my husband worked, then would drive the hour from our house to the hospital. We had to make arrangements for Jordan (Janie's brother) to stay with his grandparents during that time.

All of this happened 2 weeks before Janie's 3rd birthday. We were just about through with potty training and she was about to start preschool at our church. She now could not walk, had to wear diapers and was very weak. The medicine made her weak, made her joints hurt, and yes, made her hair come out. She was very prone to infections and needed to stay away from people.

The first part of October, Jordan was taking a trip with some friends to Disney World. Janie was released from the hospital and we could get back to a more normal routine at home. My husband continued working during this time, I had been loaned a lap top computer to work with as time permitted. I will say that, the company and people I work with were great and helped me in any way they could.

We continued making weekly trips to Winston and eventually the trips were monthly. Janie regained her strength and was very much a rowdy 4 year old girl. She got to start her preschool class in February 2000. I think that her illness and the medications were  like second nature to her because she was very young and did not know any different.

Just one week before Janie was scheduled to be featured here on MACS, we found out that she has relapsed. It is very rare for a patient on chemo to relapse. The doctor stated that she had a very aggressive Leukemia. We had to go through a month of intensive chemotherapy and weekly spinal taps. The Leukemia was now in her spinal fluid. After the 4 weeks we would have another bone marrow test to see if she was again in remission. She would then undergo radiation and within six months, have a Bone Marrow Transplant.

In June of 2001 we went to Duke Hospital, in Durham NC to start testing for Janie's Bone Marrow Transplant. Janie went through 2 weeks of intense chemo and radiation 2 times a day for those two weeks. On July 20th, she had her Bone Marrow Transplant. Janie and I stayed in the hospital until the end of September. Janie did very well with the transplant, she had no major problems. We made many friends during this time. Once she was released from the hospital, we had to rent an apartment no more than 10 minutes away from the hospital. We had to go to the hospital clinic everyday for checkups. I had to learn to give Janie her medications. I would wake up each morning about an hour before Janie to prepare her meds. Then off to clinic to get there by and 9:00 am and we usually did not get back to the apartment before 5:00 pm. Then I had to prepare her night time meds. Jimmie and Jordan would come to stay with us on weekends. We were lucky that our home was only 3 hours away.

Janie and I went home on October 30th, 2001. It was a wonderful feeling. We had to stay at my parents house due to our home being remodeled for Janie's return. During our time away my father had been very sick and was not given much time to live. Our home was finished and we moved back in. Janie was so happy to see Sprinkles, her cat. The same night we came home, she developed a fever, so off to the hospital we went. Janie continued to have fevers off and on. We now went to Baptist Hospital in Winston Salem for checkups.

On November 23rd, 2001 my father passed away. It was my parents 52nd wedding anniversary. He was buried on November 25th, my birthday.

Early December, Janie was hospitalized for fever, they kept us a little longer than I had expected. The doctors wanted to do another spinal tap. Janie once again had Leukemia cells. They told us they had no other options. No one could tell us how long we had left with our precious daughter. They told us to have the best Christmas we could. I called my 3 sisters and brother and told them, but how was I to tell my mother 2 weeks after she buried my father, that my daughter now was dying. How do I tell my 11 year old son that his sister is dying. This is so hard to write, I am bringing up emotions that I've tried to hide deep in my soul.

We made our make a wish trip to Disney in March of 2002, Janie could no longer walk, and she had Leukemia bumps all over her. We spent mornings at Disney and went swimming with the dolphins. The afternoons were spent sleeping. Once we returned home, we went to the hospital 2 days a week for blood transfusions. On Easter we thought her time had come. We called in the family and everyone told her goodbye and that it was time to let go. She surprised us all, she got up and dyed eggs that night.

April 13th, Janie had seizures and went into a coma. Later in the week we had to go and order a casket and make some funeral plans. Why do I have to do this? She is still breathing!! She's been in a coma a week now, how long can this last? My sister had come to stay with us for several weeks to help me. Once we had the arrangements in place and the list of people to call, I believe Janie felt is was finally time to let go. April 20th, I had gone to the store to get diapers, when I returned Janie had quit breathing, put still and had a slight pulse.

Life will never be the same for us. We have learned to live, but it is just different. We are now licensed foster parents and have a 20 month old little girl who we are hoping to adopt. Please continue to pray for our family.