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Lee passed away at 5:10 PM January 31, 2002
Born on July 28,1983. Lee was 18 years old. The journal was created to share Lee's story with family, friends and other parents of children battleing cancer.
Lee was diagnosed January 6, 2000 wth stage IV Alveolar Rhabdomyasarcoma.
Lee's Story
Lee celebrated his 16th birthday on July 28, 1999. There were several very important things that Lee felt were very important in life, school, football, appearance and driving a car.
The high school football season was just beginning and he looked forward to playing on the high school football team. Growing up playing football this was definitly very important to him.
Lee played Saturday football with friends almost every Saturday morning, coming home bruised, sore and very tired.
The season began, practice very intense but he was determined to make it. Just days into the practice season Lee was injured. He complained of lower back pain for days, was seen many times by our family doctor for symptons, strains thats all it was.
Lee continued to play football, but his back and now headaches were causing him much pain. More visits to the family doctor and more symptons just to be told he had strained his muscles and he needed to allow them to heal. The doctor prescribed viox for imflamation to help with the pain, it did give him some releif. I made numberous phone calls and appointments to this very same office, which offered more pain meds to cover the headaches. I decided not to put Lee on any medication for headaches since they did not know why exactly he was having such headaches. Lee began missing day after day of school, eating the viox and any asprin product like it was candy.
It wasn't until one evening that Lee sat next to me on the sofa and said 'I think I'm dying' that I realized after months of complaints that something was not right, I phoned the doctor back and asked for lab tests to rule out any medical condition. Of course, I really thought we needed an orthopedic and we were not dealing with any medical condition.
Lee said the pain was different, began like he was very sore from playing football, just more intense from within his body. Bachache, headache, shoulder pain, and any moving joint area. These symptons were shared with the doctor each visit. The same diagnosis was made each time.
December 1999 Christmas was approaching, I remember clearly this day. I was working, I called home to check my messages and there was a message from the doctors office to call them immediatly. I was very alarmed to hear this message and the urgentency in the nurses voice. I returned the call, Lee's lab reflected quite a problem. His counts were so out of the normal ranges, they needed him to be seen by the hemotoligist right away. We were looking at some type of cancer.
The shocking news devestated me. I phoned my mother to go to the office and retrieve the lab reports and to meet me at work.
We heading home to wait for Lee to come home from school. He arrived looking puzzled to see our vehicles home earlier then normal. He walked in the house and said ' am I dying that you are all here?' 'did my labs come back?'. I had to do the hardest thing I thought I would ever have to do, tell him the truth.
I faught tears and explained that something was wrong with his labs, a blood disorder of some sort is all we knew. I did not want to use the word cancer since we did not have a diagnosis however, I did tell him it could be related but we would get through this and I would be there no matter what.
The appointments were made with specialists to review the labs and examine Lee. No diagnosis, but we did get another referral to be seen by the pediatric oncology department at our local medical center. More tests were needed and scheduled.
Bone marrow biopsy was needed to possibly identify the disease.
We arrived at clinic to have this procedure done. Lee's best friend Stu came along to be by his side. The procedure began and the time slowed it seemed to almost a stand still as we waited for results.
The doctor returned, there is cancer in the marrow. MRI, X-ray and catscans were also needed now. The doctors could not identify the type of cancer, only that it appeared to be in the bone.
Christmas eve, Lee and family spent the evening at the hospital. No diagnosis at this point however, his calcium was high and needed treatment and he had anemia which means he needed blood. We returned home very late.
Christmas morning, I got up and began preparing dinner and waiting for family to arrive. It was to be a happy day.
As family arrived Lee was still in bed, after checking on him several times he just was not up to getting out of bed. Grandma (my mother) arrived and went to see if he was ready to get up came back to me and said he had a high fever and could barely stand.
I phoned the hospital and Lee was admitted. The beast had now fully began to emerge itself. I was able to bring Lee home for New Years where yet another sympton emerged, he was losing his sight.
A bone biopsy revealed that Lee had bone cancer but still no name. After 2 weeks Lee was transported to the National Institute of Health in Bethesda, Maryland.
Tests were set up immediatly to find out a diagnosis. Within 48 hours the doctors gathered with us and told us what Lee had was rare, and carried a very poor prognosis. The cancer was wide spread, brain, marrow, spinal fluid and 2 masses near the kidneys.
At this point it did not appear that I was going to bring Lee home. Emergency radiation to the brain started immediatly, along with intense chemotherapy. Lee had fallen into a grave condition at this point.
Lee's life I thought was going to end abruptly. I was terrified of the word 'cancer' alone without seeing the illness. Our family was torn in many directions. I put my job and marriage on the line and remained in Maryland with Lee and his father leaving behind my husband and two younger children for almost 3 months. I was determined to save Lee's life giving up anything that I had to.
Treatments were harsh, emotions were out of control as family and friends gathered next to Lee's bedside waiting for him to return to himself. He was weak, and very sick. He was unable to walk and remained in a wheelchair weeks. As the days passed, we grew very close to one and other. Giving each other support and hope that Lee would beat this. Family members were always near, my mother stayed with Lee, myself and his father for days at a time to be there in anyway she could. My mother remained by our sides through out this battle, giving up whatever she had to that allowed her to be with us at anytime given time.
The radiation treatments ended 28 days later, and the brain scan showed responsive activity from treatments. As the days went by Lee began getting stronger and more determined to beat this disease.
We began coming home for weekends, visiting with family and friends. As Lee got more strength we began doing treatments outpatient as much as possible. Lee had to have many blood transfusions to help him regain his strength. The drugs that were killing the cancer cells were also destroying his immune system.
As time passed Lee began looking at his life and what he had done and what he has not. He found himself looking at life from a different angle then kids his age do. He began showing his affection with I love you's and a smile. Lee had always been a kind boy but also was a teen, and with teens comes the embarressment of showing feelings for the parents and family. Lee's smile had returned and with this smile came his feelings for everyone. He made sure each time he saw someone to express his love for them, and that he did with big hugs and kisses and plenty of loving words of his love to go with them.
Over the months we made many new friends, we became very close to several families and we helped each other through the tough days we all would endure.
The parents here at NIH were special, they shared there worse fears with each other and at the same time gave strength to the new families arriving. We learn to cope from each other and used each other as teachers.
As a parent of a child with cancer, you must learn how to help this child go on each day.
Your family will be changed forever.
My strength grew as Lee's did. We learned together how to live with cancer.
Lee's strength and spirit grew each day. His positive attitude emerged and I watched this boy grow into a young man and continue to fight for his life. Lee had tought me so much in such little time that my life will be forever changed. I had thought I could not learn anything more....I was wrong. I'm a stronger person because of Lee and the love he had for me. I was his strength he said.
As the months passed Lee was feeling like himself, the pain was gone and scans were clear. No cancer could be identified. The treatments continued.
Lee began trying to catch up with school work, even though this seemed impossible being out so long he tried and he tried consistantly. All Lee could focus on now was that diploma he wanted so that he could go onto college.
This goal remained always, school was very important he would tell others, your nothing without it. As he grew even stronger Lee began being Lee again but never letting a moment go by without expressing his feelings for another. You would always hear 'I love you' from Lee. His smile could lite up a room and his love for life shined through.
Lee enjoyed making others laugh, and if he heard a young child cry at clinic he would try his hardest to bring a smile to that sad face.
There has been so many memories I cannot begin to share all of them because of the madnitude of them. Lee's love for life showed everyday and every minute and wanted eveyone to know how precious life was.
Remission continued through out treatment.
Lee made his weekly appearance at our local clinic bringing smiles through out the halls.
Scans were clear and Lee was even happier now, you could see the anxiety in him as we waited for results each time. He would tell us he is fine but you could see the fear in his face as we could on all of our faces.
Lee has had more courage and strenght then I have ever seen in anyone. Because of this he has touched so many lives in so many ways.
I came across a webpage one day and decided to share Lee's story with the world. In my entries you will find many tears and many memories. Journaling has helped me through some very tough days and without it I'm not sure what I would have done. I found that writing my thoughts helped me, it was a place to go when times were bad and a place to go when I wanted to tell the world something that brought me joy.
I began keeping a journal March of 2001.
To Lee's friends, EP high school staff, EP students, our community, co-workers, family and the many new friends who have offered their support.
Lee, Tiffany, Chas and I thank you so very much for the on going support that you have shown for Lee and our family. This means so very much to us all. We thank you for the many cards, gifts and donations that you send. Lee enjoyed every peice of mail sent to him. He looked for mail everyday.
Thank you so very much for sharing your time with my son.
Lee's mom
Journal
Wednesday, October 1, 2008 1:04 PM CDT October 1 already. The leaves are beginning to change color and days are becoming milder. Its actually a very beautiful time of year. The holidays will be here before you know it.
This year will be special, my firt grandchild is due to arrive in late November just in time for Christmas. I'm sure he will be amused by all the different color lights flickering..(did you catch that? its a boy!). His name will be Blake Lee. I like it.
I'm sure Lee already knows he is about to be an uncle and is watching over his little brother and his growing new family.
Take care,
Tracy
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