Faith That Sustains

It has been a rough month dealing with health issues once again but I believe the end is in sight, at least for now. My blood pressure finally seems to be under control. I am feeling better and finally sleeping better (unless my pets wake me).
If you are reading this blog, please be in prayer as my husband recently lost his job. I am praying for another one that will be better for him. Often when God closes a window He also opens a door. I want to make sure we don't miss an opportunity because we are focused on the wrong thing. We have peace because we know that all things will work out for us. Our New Years resolution was to be more faithful in church attendance and even on the nights where I am running in the door at the last minute and we are scurrying to get supper on the table, to remember to give thanks.

The Celebration of our Savior's Birth

This time of year I get teary eyed. I think so often and so gratefully that someone was born only to redeem us from sin. I can feel so unworthy until I remember that he came to make me worthy.

It has been a hard time. I had skin cancer surgery. My blood pressure has been very high and I have had fluid in my lungs. These are all the things that were caused by my radiation treatments so many years ago. The doctor said she feels I may be showing signs of congestive heart failure.
Does that scare me? NO. I was granted so many extra years to live....and live I have. I have loved life. I will do all I can to remain here for as long as God expects me to stay. I do not fear death. I am sad to leave behind loved ones and friends. I do not take to heart what the doctor says because I know that only God knows and determines how long I will live.
If I was told I would die tomorrow I would be grateful for all the bonus time I was given. Time to see my son grow up and many other wondrous things. The time has gone so quickly. I hope for more but I am happy for what I have had. I know that there is more to come and I take great comfort in that.

My Story Continues........

After Tom was better I began to have some problems with anxiety. I was shopping in a grocery store when suddenly I felt as though I would pass out. I had the overwhelming sense to flee and I did just that. A week or so later it happened again and again I fled. Later did I learn this was the worst thing I could have done. I began to see a therapist who tried to help me. In the end I read some books on anxiety and joined a support group. It took me years of having these attacks before I could get any kind of control over them. During this time Tom's Dad and I had serious problems. He would belittle me for them. If I prayed he would tell me I was wasting my time. This began the downward spiral which lead to our divorce. During this time he began to tell me things that he had previously lied to me about. Two of my attacks were so severe I called a friend who was an EMT. She saw me and kept saying she felt I had heart problems. I shrugged it off until about a year later an internist told me that I had two bad heart murmurs. Right after my radiation had ended I knew I had developed a murmur. That was mitral valve which is common and I wasn't overly worried. At this time I had another test which showed my aortic valve was now leaking with regurgitation. It also had stenosis which was diagnosed as mild. Over the next few years I had several tests done and for a while it remained the same. Shortly after I moved to my new house and remarried, it was worse. I was then asked to have a more involved procedure and that showed I needed the valve replaced quickly. The stenosis was worse and I was risking going into heart failure if I waited too long.

Tom's Story Ends Beautifully

Tom had to endure three years and three months of chemo for his protocol. While the first year was the hardest, he had to take a lot of steroid pills. He was constantly monitored closely for any signs of relapse. He finished up his protocol with a few glitches along the way. At the end, he was still in remission and has remained so for fifteen years. I will say that it did alter his personality. The kid who exuded so much self confidence began to think people could see him and know something was wrong with him. He was self conscious about his scar from his central line and actually told a few kids he had been shot. He missed an entire year of school and while he was gone they made a videotape for him. He was thrilled when it arrived and suddenly he turned white. A kid in one room said "We're making this for Tom? I thought he died." His friends visits were fewer and fewer. Some of the other high school juniors asked me if leukemia were contagious. He did meet other teens with cancer and went to a camp with them. He loved that. They also went to DisneyWorld together. He stayed in touch with some for several years but now he doesn't any longer. He also does not go in for checkups. He says if he is sick he will go but he doesn't need the constant monitoring. It was hard when he first stopped the chemo. I was having anxiety attacks. I felt as long as he had the chemo it was a safety net. Tom was thrilled at first but later began to worry which manifested itself in different worries. We slowly lost touch with the other families. I stay in touch with my friend Paula and the mother of another teen who survived against very bad odds. Her son just recently got married.
I know now that whatever happens to Tom is in God's hands. I believe that Tom was meant to survive this. I have been asked by other mothers why do I think that some children lived while others didn't. I cannot answer that except to say I believe for some reason Tom was meant to live. He had more complications than almost any other patient and each time he survived it. Tom has a deeply strong belief that God spared his life. He is a very good and compassionate person. He makes sandwiches and takes them to homeless people who live under a boardwalk. He has given them his winter coat at times. He has a totally different way of looking at things. Making money is not as important to him as perhaps it should be. He likes to spend his time doing things he loves. Like me, he understands that we are only here for a span of time. He wants to savor all the moments that he can. He knows the price he paid for that opportunity. Sometimes I think he is a hero.

Thanksgiving Prayer

Dear Heavenly Father,
Thank you from the bottom of my heart for allowing me to live so long after my original diagnosis. For bringing me through all that you have. Thank you for all you have done for Tom and for other people in my life.
Thank you for bringing me through the darkest clouds of fear and sorrow and into the morning light. I pray that my son will have a long and healthy life filled with all the good things. Not material possessions but spiritual riches. I have tried to teach him to see your hand in nature and to always know that a part of you is in others as well.
No matter what happens I will always know you have had this all in your hands. At times it was not easy but you were always there for me. At times I left you, but you never left me.
Thank you. Thank you. Thank you.

Tom's Story Part V

After Tom's reaction to the drug they decided they would make it from Tom's own DNA. They flew some of his blood to NIH in Bethesda Maryland and actually made the drug just for him. He never had another reaction. I was overwhelmed at all that was being done for my son.

If you have never known anyone who has had leukemia, it is a very difficult disease. The blood counts are constantly monitored because if too low (platelets) you can hemmorage. Often after chemo when Tom threw up it would lead to blood loss. The white counts are also very low from chemo and prohibit you from fighting infection. It's a constant balance of chemo and blood counts. At times your immune system is too weak and you are neutropenic. That means no fresh fruits or vegetables. Special precautions. No brushing of the teeth. When you get hit hard with chemo your hair will fall out. Just as it is coming back and you get hit again, you lose it again. For teenagers who are self conscious, this is especially upsetting. There are also bone marrow aspirations which are needed to monitor/diagnose. They are very painful. To see your child go through this is so difficult. You pray and you beg God to let it happen to you and not your child. You so desperately want to do something that will help but there is nothing you can do except hope, pray, believe and let your child know that you will be there with them no matter what. Throughout this ordeal we watched many children lose their battles. When a child younger than Tom died, he was always devastated. I tried to go to the funerals to support the other mothers but Tom didn't go. There were a few teens whose funerals he did want to attend. One of those was for George.
George was eighteen. He was so lovable and had a sister who bought her twins to the hospital. That always thrilled him. When we first met George he was doing so well. One day he was out of remission and we were so concerned. His mother had to leave the hospital and I volunteered to sit with him. He was vomitting blood and I was so concerned for him. He suddenly became confused and thought I was his mother. This was one of the most difficult moments for me. I had to comfort him and he kept telling me how scared he was. I called the nurse who ordered some transfusions of platelets for him. His Mom returned and we lost him the following week. I still miss him and so many of the other patients we came to know and love. I worry that they will be forgotten. Somedays I make a list and write their names down. Somedays I dream of them in heaven all together. George is always watching out for the younger ones. It is my great hope when I die to be with these special people again. To know them enriched me and I could never forget them, especially Danny, Richard, Michael and George. No matter how rough they had it, they always had a word of encouragement for Tom. I like to think of them now as guardian angels.

Tom's Story Part IV

Please remember that I am writing Tom's story about fifteen years after it took place. There are details that are lost to me but the general story is still very real in my heart and mind. Somewhere along the protocol Tom was receiving shots in his thigh muscles. We were told it was made from a fungus or bacteria and it was called L asparagenese. This was an important part of his intense protocol.
He had received several of these shots when after another he began to complain a lot. I looked at his leg and noticed it was slightly pink and felt warm. I called his doctor and inquired if we should be concerned. At this point we were home and going to the clinic three times a week. These were ten hour days of long waits. He would receive chemo in a chair and if all went well we would return home. Somedays tests were not good, white counts were too high and he would be admitted from the clinic. Sometimes he needed blood transfusions that could not be completed and that was another reason to be admitted. His doctor felt it was okay and he received his other treatment and we came home. Sometime during the night Tom began to make a fuss saying he knew something was seriously wrong with the leg. I called his doctor again who had us return for another visit. He again said the leg was okay but because Tom was now in a wheelchair saying he could not walk on it due to pain, we were referred to a pain specialist. The pain specialist said he could take two different pain meds, altering them every four hours. Tom's doctor felt he was enjoying the escape of his situation with pain meds but I was increasingly concerned about the leg. The following day Tom was feeling poorly and I again took him to the hospital. While we were waiting in a waiting room, he looked at me and said that he felt desperately ill. At that point he slumped from the chair and fell on the floor. I began to scream for the nurses to get his doctor which they did. Ultimately, it was discovered the leg had become infected and he was becoming septic. This means the infection was entering his blood stream. He was put into ICU for potent antibiotics. Before they even moved him, they started IVs in each arm which they were pushing the fluids in manually. To say I was scared was a huge understatement. That night Father Fred, the hospital priest came and sat with me. I told him that although I had previously known what might happen that evening it was made so very real to me. I could lose my only child. I didn't know how I could survive that. Father Fred shared a lot of wisdom with me and assured me that God would be with me and I would be okay. That night was the first night Tom wasn't in a room where I had a recliner to sleep. If I sat by him it was in a very uncomfortable chair. I paced most of the night but soon he seemed much better. The following day they moved him to the one private (isolation) room in ICU and brought me in a recliner. He was in there for several days more. I didn't have a phone in there but my nurses who had become so supportive checked on me constantly. As usual my friend Paula who was still there with Danny for most of our hospitalizations, was a beacon of light. Another close call and each one Tom pulled through reinforced my belief that it was God's will for Tom to live. I started to accept that he would be okay.