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.

Tom's Story Part III

We had been told that after the induction phase of the chemo, Tom would be going home and just have chemo in a clinic unless he developed other issues. I had thought I would be home in that first month. Little was I to know that every complication possible would arise. Tom had the worst reaction to the chemo. He would throw up for twelve hours continuously. There was a "chemo cocktail" given before hand but that didn't work on him. It contained benadryl and when he took it he was not only sick but then felt disoriented so he refused to take it at all. He was getting high doses of some of the most potent chemos. Idarubicin, donarubicin, adriamyacin, I could never remember all the names. During the early phasse he had a central line put in. He hated it but it kept him from getting stuck constantly with needles. When he finally got home from the hospital he came into the kitchen after a few days. His arm on his left side was horribly discolored and he said he had no feeling in it. My immediate thought was blood clot. I called his doctor who told me to bring him to the ER. I had to remove my chicken from the oven and go. Tom wanted to negotiate about this, reluctant to return. Fortunately my husband was home and he drove us. When we arrived there was a team of doctors waiting by. They told us a venagram was necessary but if there was a clot it could push it into his heart and kill him. I agonized and told my husband he needed to give consent because I was not feeling rational. He did and the procedure went okay but did show a clot near the central line and right outside of his heart. This was critical. Many calls were made to other pediatric oncologists to see if this had happened and what had been done. They discussed surgery but felt it too risky. It was decided he would be on bed rest for thirty days, inpatient of course, with heparin to dissolve the clot. We were told if the clot moved it could result in a heart attack, stroke or death. We made it through the next thirty days and later learned that the clot had been sealed off by Tom's body and his body had made new blood supply to compensate. Our bodies are amazing and wondrous things. Once again God brought us through a crisis.

Tom's Story Part II

Over the next few days we learned that Tom did in fact, have ALL, or childhood leukemia. I began to thank the Lord for that. I was then presented with a very difficult choice to make. I was told if I took the conservative route of treatment for him, he would most likely relapse within two years. There was a new, very aggressive protocol. Complications might ensue but without a sibling for a bone marrow transplant, this was by far his best hope. The doctor then told me that he only had a 35% chance of survival for five years. That was so devastating. Again, I told the doctor Tom was not to know how poor his prognosis was. Because he was a teen in puberty his risk was DOUBLE. All the while, I told Tom that he would be fine, just as I was. He met many other children on the cancer ward, some babies and he was overwhelmed at times. He then began to say how grateful he was to have lived sixteen years and experienced life because some of these kids were so very young with poor prognosises. I was so proud of how he handled it all. We were told that if he went into remission after a week, things would look much better. Despite the aggressive protocol and bone pain he was now experiencing, he did not achieve remission. The second week he was still not in remission. His doctor became very concerned. He called a special meeting and insisted his father be present. He told us that if Tom were not in remission by the end of the month the prognosis was even grimmer than he had thought. My husband ran out of the room, out of the hospital and went home. I was left there to digest this and then put on my brave face. I needed a minute and I went down to my car in the parking lot. I began to pray, actually I began to loudly call out to God. WHERE ARE YOU????How can this be happening???? Why did you let me live to see my only child go through this???? Then I began to pull myself together and draw upon my faith. I began to thank the Lord for the fact that on day 30 Tom WOULD BE in remission. I then called my parents and had them call everyone to pray and believe that we would get his answered prayer. My Dad began to fast and he came and prayed with Tom at the hospital. He told him that he knew he would be in remission. It seemed forever but on that last bone marrow day 30 our doctor was in Hawaii on vacation. Another doctor called him on the beach. God answered our prayers and Tom was in remission. We all cried when we got that call from Hawaii. I knew in my heart that God would deliver him. I never thought it would be easy but God would teach us many lessons along the road to his recovery. We just had to be patient and endure another night of weeping and know that our joy would come.

My Son's Story Begins

For the next several years I went for frequent check ups. Everytime I had a swollen lymph node from a virus or infection the doctors had me get a check x ray and blood work. Once the radiologist said that it was so fortunate I had not had chemo yet so WHEN the cancer came back I would have that to fall back on. As more and more years went by, I began to relax and realize that I was totally delivered from this disease. I remember after seven years focusing on the fact that every cell in my body was new and there was still no cancer. At some point I realized that I was never going to have any more children. Despite the precautions they had taken I was never able to get pregnant again. That was difficult to accept but I comforted myself by thinking that my son was healthy and any further children I had might have been exposed to radiation in my body, so perhaps that was for the best.

I began taking college courses and for three years (I started when my son was 13) I went off on tangents such as taking piano lessons and music courses. It seemed like I had a real life again. During the Springof 1990 my son came down with a horrible case of chicken pox. My doctors were worried because I had never had them. He was desperately ill and I had to take him several times to do the doctor when the office was closed, to avoid spreading them to others. He was still seeing a pediatrician. He began to lose all his color and when he slept he woke up soaked. I attributed this to his fever. A few weeks later when the outbreak was over he was still having some of the profuse sweating and his color was terrible. I took him back to the pediatrician who became alarmed when she saw his blood counts. She told me she was afraid he might have leukemia and he needed to be seen by a hemotologist right away. We made the appointment and saw a pediatric oncologist. He said that although my son's blood counts seemed to be coming back, he did think he was showing signs of early leukemia and that he wanted him to have a bone marrow. By now it was summer. I knew the phsycial discomfort of a bone marrow and I was very reluctant to that idea. As weeks went on Tom seemed to recover and I prayed and was ever hopeful this was a fluke. The doctor kept monitoring his blood and determined the day after Labor Day he would have to have the marrow done to see what was going on. We got to the hospital early in the morning and I fought to have him put to sleep for the test. They did it in the ICU unit and he was anesthitized. Shortly afterwards the doctor came into the room and told us it was deffinitely leukemia. I nearly fainted. I fell into a chair. There was a minister there, trying to speak to us but I just couldn't hear anything else. Again, the cancerous lion was at my door. Now this time looking to devour my child. My grief was unspeakable. Before long they were wheeling Tom's bed back into his room and I had to put on a brave show. I explained that he had leukemia. It would be at least a few days before we would know if he had ALL (commonly called childhood) or AML (adult). We were told to hope for childhood as the cure rate was better. That morning they introduced me to Paula. Her son Danny was 14 and in the next room. He was diagnosed with AML shortly before and having chemo. She hugged me and told me that I would be alright. I had no choice.

Part VI

During one of my last visits to the radiologist he told me he was very concerned about something. He said I still had a lump in my neck that didn't seem to have responded to the radiation. Panic set in. He also talked to me about how distressing it was for him to see me with my son and how he hoped I would survive. There was genuine concern which would really shake me.

A few nights later I had a bought of insomnia. I went to the family room and turned on the television and watched a show on at that time called The PTL Show. This stood for the Praise the Lord show. I thought the hosts seemed a bit flashy but they had a guest on named Vickie Jameson. She began to pray for people and she said that the Lord was telling her that someone had lymphoma and they were concerned because the doctor had told them that this lump should not be there. I do not remember her exact words but there was no doubt that she was describing my situation to a tee. She said that person should put their hand on the lump as she prayed for them. What I am about to say next may seem impossible but it happened. I could feel the lump shrink. I felt a warm sensation and suddenly I felt peace about the entire situation. I began to rejoice because I knew that God's will was for me to come through this. The following morning I went to church. I felt the Lord prompt me to testify about what he had done for me. I was not one who enjoyed attention and I tried to convince myself that it was not the Lord but my ego. The Lord does not let us fail Him. I suddenly prayed silently "Lord if I am to testify let the minister sing this chorus...." and guess what the minister then began to sing the exact chorus. Oh boy did I feel in the hot seat. I still was not about to stand up and draw attention to myself. At that point imagine my surprise when the minister said "The Holy Spirit is telling me that someone here has a testimony to share with us. Something wonderful has happened to someone and it will glorify God." I sat still in my seat. Finally he spoke to ME and said "I hope this won't upset you but the Lord is telling me you have something to share with us today." I kid you not, because of what transpired during that twenty-four hours, there is NOTHING that could ever convince me God is not real. The lump began to shrink even more and soon it was gone which was later confirmed to me by the doctor.
About this time I began to pray one day and I asked the Lord to give me a scripture to confirm my healing. I opened my Bible and it fell open to the verse on the header. My eyes immediately went to the scripture "Weeping may endure for the night but joy cometh in the morning." I began to anticipate the morning joy. Since that time there has never been a moment where I have not felt the Lord's presence with me. Life has given me other ordeals to deal with. I have other issues caused by the radiation I received thirty years ago. I have learned a lot. Mostly to trust in the Lord. He hears our prayers. He does not always answer the way we want but He will always be there for us. I am now at the point where if I knew I were to die I would be sorrowful to leave people behind but I would not be fearful. When we leave the world we leave it alone except that I believe we go immediately to the presence of the Lord if we are His.

Part V

I have described a lot of what was happening to my body physically. It was a very difficult time with having discomfort of skin burns and my surgery really took a toll on me. I was having trouble breathing with the tumor swelling and dieing and I was throwing up much of the time. I ate but still manged to lose 26 pounds over about six weeks. I was given medicine to take before the treatments but it really didn't help that much. Coming home in the car was terrible. One day as I went to pick my son up from the camp I began to throw up on the porch. The lady who opened the front door said something to the woman about perhaps I was an alcoholic. I was so outraged and began to lecture her about cancer and how she should not judge people when she had no idea what was happening.
During the radiation I became fearful of the machine. I began to have nightmares that the machine would not turn off. In my dreams (alone in this concrete (I believe lead lined) room I was doomed to be irradiated to death. I told my doctor and he told me this was a common dream. During the treatments I would count in my head at first and they seemed to take an eternity and I never felt so alone when they closed the door to leave me there.
I began to talk to the Lord. I would tell Him that if he were with me I knew I was not alone. I would sing choruses I remembered from church. I would think about my blood counts and my low immune system and I would pray that I would not get sick so I could finish my treatments. Mostly I prayed that God would allow me to raise my son. This was never a concerete time but I think I kept saying if I could only live until he started school...then I raised that to when he graduated grammar school. I tried to bargain with God. All the time I knew deep inside that whatever God's will was I was powerless to change it. All I could do was try to get myself ready for if that time came. I was struggling with being hurt by friends and family who I felt could have helped me more. Each day after radiation treatments my mother would drop me off and go to her house. I would go into the bathroom where I would remain for hours and have toys there to entertain myself as I was too sick to do anything else. Sometimes I would be sick for hours. When my husband got home I tried to have some kind of dinner for he and my son and I stupidly tried to keep my house up to my standards. I didn't have visitors and in hindsight this was a real waste of my valuable energy. It was the summer and I didn't have air conditioning. I did have a nice patio out back with a fenced in area and on my better days my son would play on his little tricycle and I would sit on the steps and take in the flowers. I would savor those moments and tell myself that this would pass. Eventually it did.

Part IV

There was a physicist who was part of the radiation team, Lee. He was from the South and had an easy way about him. He was calming. He made me lead lung shields to protect my lungs. I was so embarassed as I had to be topless for all this and much of the time I had a hospital gown and panties only on. They had to take pictures of all my purple ink radiation markers. The ink ruined some of my clothing. I was now having to buy new clothing. By the time the radiation was over I had lost nearly thirty pounds. The radiation machine, the XK Linear Accelerator I believe was the technical name, was huge. It reminded me of my refrigerator and to this day I believe radiation has a smell. Whenever I opened the door and hit the steps going down the smell would get in my nose. It made nauseous. They started with the chest first since the tumor was rapidly growing. My voice was very hoarse and actually I thought it was sexy. As the weeks went on my tumor swelled before dying and my chest hurt. I coughed a lot of the time. My son was brought toys from other people who worked there. My mother had to drive me, I was not allowed to drive, or capable of driving. She was not happy about that and let me know. I began to look for a place I could send my son and found a summer pre school camp. I enrolled him and he cried when I dropped him off telling me he hated that place. I told him I was sorry but I didn't think he should see the cancer patients that I was seeing. At times it was scary. People who looked at death's door. I wondered, will I look like this someday? I met two other young women who had MY disease. I had no choice but to identify myself by this disease because my life was revolved around trying to get rid of it. Susan had had chemo many years earlier and hers had relapsed. She was getting heavy radiation in hopes of killing it that way. She knew she would be sterile from the radiation and that bothered her. She was married and I never saw her husband with her. The other girl Sandra was also married and she was similar to me. I noticed the doctors tried to keep us apart but we kept talking every chance we got. They both envied that I had a child. Once a week we met with the radiologist after the treatment. I have to honestly say that I blocked out much of what he said. They were not happy that my tumor was shrinking slowly and there was some small ones in my neck that were not shrinking at all. It was going to be a long summer. I didn't know it then but I would end up having 58 radiation treatments. I would be so ill that I couldn't have chemo and they would save that for WHEN it came back. There was much discussion about that but in the end I think the decision not to give me chemo then probably contributed to my survival. Physically I have never felt the same as I did post disease and radiation. I had one goal then: to see my son grow up.

Part III

As I began to retell this tale something that really surprised me has happened. I have begun to have a dream about a recurring nightmare I had while sick. I think that I should not go into such details about the hospital stay but sometime within a few weeks I underwent a lymphangiogram and an extensive surgery. The surgery was where they collected biopsies, they collapsed my stomach to do that, they inserted a stomach tube and pump and I didn't eat until about ten days after the surgery. I also had my ovaries moved and sewn under my uterus to shield them from the radiation should I decide to have more children. Most importantly the removed my spleen because it was very enlarged. They wanted to see if the cancer was in it, because that was the difference between stage 2 and stage 3. They told me they could not find cancer cells so technically I was stage 2 but that the spleen certainly looked disease so this concerned them. It was decided that the tumor in my chest was so large that I needed radiation immediately. There was a meeting of doctors whether to hit me with chemo first but then felt I would not be able to breath if they didn't get me radiated quickly. I left the hospital right after having my abdominal stitches removed (the scar was at least a foot long) and went to another hospital to meet with the radiology team. They took lots of xrays and I had to come back the following week for my first treatment. They told me I would need a lot of radiation and to expect hair loss, burns on my skin, weight loss and nausea.
I began to shut down as Dr. Haas began to talk. At one point I asked him to stop talking, explaining I was feeling physically weak and on overload mentally. I went home after that for the first time in many weeks. I thought I would be so happy to be home until I walked in and saw my sink filled with every cup, glass and utensil that we owned, all dirty. My floor was filthy and I just slumped into my bed and held my son. I wondered how I was going to get through this. By this time I was talking and praying constantly. I would bargain with God, telling him that surely he would not want anyone but me raising my son. I would point out the condition of my house. I begged him to take away the physical and emotional pain I was feeling. It was June now and the yard was pretty with things in bloom but I just saw it all from my windows. I kept wondering how I would get through the radiation with my toddler in tow. About this time, I called a friend I had grown up with. She had a daughter a year younger than my son. I told her what had happened to me and she said "I'm sorry, this is so depressing. I just can't handle it. I wish you well but I can't handle talking to you and hearing about this." I had hoped she would offer to help with my son but instead she hurt me so badly that thirty years later I can feel the sting of those words. Many years later this woman would get cancer, lose a baby and contact me. She never spoke of what she had said to me at that time. We talked for a time but she is no longer a part of my life.

Part II

I had my son Tommy's third birthday party and shortly after I was admitted to the hospital. I was so anxiety ridden I fainted in admissions when they took blood. I kind of woke up in a hospital bed with my clothes on. The nurses were so kind to me and I had a wonderful roommate who was about my age. A college student named Stephanie with very high blood pressure. We talked about books and she was a great distraction. They did some preliminary things and the day they were doing the biopsy they moved me to another room. It was a private room and I wondered if they felt I would need the privacy. That morning they took me in and swabbed my neck. I was awake and the surgeon was having a discussion about his golf game. I felt his tone change and then he sewed me up and I was whisked back to my room. Later in the day a hemotologist came into the room and introduced himself. Thirty years later I can still picture what he was wearing...down to his Indian silver and turquoise jewelery. He told me that I had Hodgkins disease and my response was "Thank God I don't have cancer." He looked at me with shock and asked me what I thought Hodgkins disease was. "I dont' know." He explained there were two kinds of lymphomas; Hodgkins and non Hodgkins. He said I had the Hodgkins variety. There were four types of Hodgkins disease and preliminarily they thought I had type two. They would need more testing and a confirmation of that. I remember the sensation I suddenly felt. It was as though my body were falling...through the bed ..... through the floor........through the Earth itself. Then the first thought hit me. I might not survive this. I might not be here to raise my three year old son. I asked the doctor to give me a minute to let this sink in. He told me he would be back the following day and tell me more. I would need a bone marrow aspiration to make sure it hadn't spread to my bones. I would be also be having a lymphangiogram. I picked up the phone and called my husband. I told him and he was just quiet. I wanted him to tell me that he couldn't live without me that there was no way I would be taken from my son. Instead he said that he had been reading up on my symptoms and he felt that Hodgkins seemed the most likely. He came at lunch time, acted very normal and left less than an hour later. He was picking Tommy up from my mother's so she could come to the hospital.
The following morning they came in with some very large looking needle. I was in a teaching hospital and what I didn't know was this was a resident. He attempted several times before finally getting some marrow. It was very painful and suddenly I began to have problems. I had to have my hips elevated and learned he had taken a piece of the cortical bone, a sizeable piece. He was in my hip seven times and you can see this on an x ray now. As though that were not eventful enough during the night some man who was an alchoholic in the hospital to dry out got loose, pulled out his catheter and came to visit me. Imagine me, on pain meds and in a lot of pain opening my eyes. I hear something dripping but don't know what it could be. My private room was quite dark, the nurses kept the door shut but this guy had opened it a tiny bit. "Bathe me." Well I must have heard that wrong and asked him to repeat it, which he did over and over. Again I am hearing dripping and feeling something wet through the covers dripping onto my leg. I press the buzzer over and over but no nurse comes. At this point the man puts his leg on my bed as though he is going to climb in. I feared him causing me PAIN and I began to scream. That's when the nurse threw open the door, turned on the light and suddenly I see the man is naked, blood is what's dripping. She literally drug him out of my room calling to me she will be right back. She is very upset and apologizes over and over. At this point, all I care about is having relief for my pain in my hip. The next day all the nurses and doctors who know me are popping their heads in to tease me about luring sick men to my room...my private room. Anything to distract me. I had this wonderful nuse named Leeta. She held my hand when I was having the bone marrow. I nearly squeezed her hand and crushed it but she never left until it was done. She always checked in on me after that even when I wasn't her patient and God love her, she once bought me White Castle burgers. I shall never forget your kindness.

Introductory Post

Today I have decided to start a journal of faith, and perhaps some other things. I have been reading so many wonderful journals that have inspired me and I wanted a place to talk about my faith in God, my beliefs and perhaps learn a little more about my journey as I write down what has already happened.

My story began when I was 22 years old and the mother of a two year old very active little boy. I had been married for a few years before he was born and for about a year I had been tired all the time. I went to several doctors but had been diagnosed as having mono. When I found a lump in my neck I was told that swollen lymph glands are a part of mono and nothing to be concerned about. A few months later in the middle of the night, I awoke to stabbing pains in my back. I actually looked to see that I had not been stabbed, that is how severe the pain was. My mother came to stay with my son and I went to a local emergency room. They did xrays and gave me a shot of demorol which actually stopped my heart, I lost consciousness and awoke to profuse vomitting. They sent me home telling me I had torn a muscle, and yes, my lymph nodes still indicated that I had mono. What will happen next is so rare and looking back, I can only say it was God's hand upon me. Roughly a week later, I received a phone call from a doctor who had seen my xray. He had called the internist who was caring for me and told him he was very concerned about what he saw. The internist told him, as he had me, that I was worried about nothing and I just had mono. This doctor (may God always bless you doctor for taking such a chance, and if you are wondering if he knows YES I have contacted him and told him that he helped to save my life) told me that I needed to see another internist as soon as possible and have further testing done. About this time, my husband came home with the announcement that his health insurance had changed and he had joined an HMO. I was not happy about that at all but our costs would be so low and he pointed out I had spent a lot of money that past year trying to find out what was wrong with me. Other than being told I was anemic and needed iron supplements and being told about the mono nothing had been done to help me. I reluctantly made an appointment with the HMO and a wonderful internist, Dr. Thurston. The first time he saw me he was very concerned. He sent me for an xray and concurred that something was wrong. He set me up for a tomogram which would show the layers and depth of my chest. He called me in after receiving the results and gave it to me straight. He told me I either had leukemia (and because I had been sick for so long that would have been the worse prognosis OR I had a lymphoma.) There was a tumor in my chest and I needed to have a lymph node biopsied. I also needed a bone marrow aspiration but he didn't tell me that until I was admitted. Smart man. He set up a hospital stay and believe it or not, I was happy to KNOW that I was not crazy as the first internist had suggested but that I was sick. Perhaps now they would help me. It was now April and my son's third birthday was early May. I figured if I could just get through that party I would then be on my way to getting better.