This is a survival story in the making of a little boy's battle with cancer. His name is Seth and his battle started the summer of 1998. There was a carnival in town and we had taken Seth down to ride some of the rides and see some people in town that he had not seen in awhile. He was just recovering from a throat infection. I was a little worried about keeping him out so late, but Seth was having such a great time playing with all of his little friends that I just couldn't take him home. That night he definetly had more energy than I did.
We went looking for his Nana to get a candy apple. That was when his swollen gland was first noticed. I was a little upset with myself for not noticing it sooner. I took his temperature and it was normal. He had eaten very well all day. Although he was just getting over the throat infection, he had been acting lively just like any normal kid, for about a week now. Since it was so late and he had no other symptoms of illness, I waited until the next morning to call his doctor.
The next morning Seth was so full of energy and showing no other signs of ailment. I called the pediatrician to discuss the swollen gland. The doctor asked alot of questions, such as temperature, eating habits, sleeping habits, vomiting, loose bowel movements, energy level, ect. All of these were normal. He believed that this was associated with his throat infection and we should just wait and keep an eye on it. If there were any changes in the symptoms, we were to call him immediatly. A few days went by and there had been no changes. I talked to my family and friends in the medical profession, and the more people I talked to, the more I was convinced that it was something more than a throat infection.
The doctor was called again. His new diagnosis was a bug bite reaction of some kind. He felt it was very common in the summertime for children, and he wanted to wait about a month to see if there were any changes in the size of the gland or his symptoms. This diagnosis just hit me the wrong way. I had never heard of such a thing. I decided it was time to get another doctor involved for a second opinion. When the second doctor was notified, he got Seth right in to be examined. The doctor did not seem too concerned, at first. Actually, he tended to agree with Seth's pediatrician, but because I was overly concerned, he decided to take a few blood samples for testing and watch the swollen gland for a week. The doctor called me a few days later to let me know that a few of the tests came back and so far everything looked normal. He wanted to know if there was any change in Seth's symptoms. I told him that there weren't and that Seth was acting and playing normal. He said he would inform me when the rest of the tests came in, and not to worry.
Two days later, Seth developed a fever of 102.6. I took him to the second doctor, the one that was running all of the tests and he examined Seth. He diagnosed it as the flu and didn't feel it was associated with the swollen gland. There was only one test remaining but he decided to test him for TB. Seth was given the under-the-skin test and we waited the 48 hours, to see the results. By then, the last test result would be in. We went home and waited for the results. Seth's fever stayed the same but he did not have many other symptoms of the flu.
When we returned to the doctor two days later the tests were all negative. The doctor sat me down and told me that he was stumped and wanted Seth to be seen by a infectious disease doctor at major hospital, instead of the limited resources in our area. I ageed. An appointment was made for four days later. I was not too concerned about everything that was happening. I kept telling myself, that until I knew what it was that I was dealing with, then I would just wait. Seth was feeling fine, playing well, but was still running a fever.
The next four days seem to go on forever. Finally, the day arrived and we were on our way to the hospital. The trip itself took three hours. I was impressed on how well Seth handled the trip. When we arrived at the hospital I was really in awe of the location. It was nestled in the hills of a small town in central Pennsylvania. Being from a small, country town, I was a little hesitant about going to a large hospital.
The doctor was very nice and had a good rapport with children. Seth warmed-up to him rather quickly. The doctor wanted to run some more blood tests, along with a C.A.T. scan and a biopsy of his swollen gland. He said from the results that he saw from his other tests, he did not see any reason for alarm, but stated that he needed to know what we were dealing with, to get Seth the proper medical attention to clear-up his swollen gland. We had the blood drawn first and Seth was a real trooper. He was getting use to being poked at. His biggest concern was that they gave him a bandaid. We then headed back to the doctor's office for the biopsy. Seth was so scared it was really hard on me, but he did not want me to leave the room. They took two samples to make sure that they had enough to complete all of the tests that they were going to run. The pathologist that performed the biopsy said he would have the preliminary report in about ten minutes. We awaited the results in the waiting room.
Seth suddenly looked so small and fragile to me. He was such a joy in my life and having all of this to deal with was bad enough, but on top of that, I am a single parent, and not having someone to share this with was tearing me apart. When the results came in, the doctor called us back into his office. The doctor said that his blood worked looked fine although his hemoglobin looked a little low. Now, he said that a little bit of anemia could be caused by many things. He asked if Seth drank alot of milk, which he did. He then told me to constrict his intake to just in the morning with his breakfast. I was shocked at what he was about to tell me next. He said that the biopsy showed that the tumor was benign. I thought that I was going to fall out of my chair because I had no idea that they were even looking for cancer. I guess I was just ignorant of the idea.
The doctor continued with saying that he believed it to be caused by an infection of some kind and that he would send us home with an antibiotic but we still needed to get a C.A.T. scan to see if any other lymphnodes were involved. We headed down to radiology to get Seth started on drinking the orange flavored sulfer for the C.A.T. scan. He was so tired. It was extremely hard to get him to drink. He fell asleep during the C.A.T. scan, which was a god-send because he needed to be very still. Afterwards, we headed home. Seth slept the whole way home and the rest of the night. He was so tired out from his ordeal and I was very grateful that he was. I had a very emotional day myself and needed the time to compose myself before becoming the mother again.
The next morning, I went to the pharmacy to fill Seth's antibiotic and I ran into a small problem. My perscription plan did not cover the antibiotic he needed. The pharmacy called the doctor to see if he would change the perscription to one that the plan covered; it would save me a couple hundred dollars. The doctor was in a meeting and would call back in an hour. I took Seth to my mother's house to visit while we waited for the doctor to call. I returned to the pharmacy an hour later and the doctor still had not called. The pharmacy called the doctor again and informed him what was going on. The pharmacy said that the doctor wanted to talk to me.
This is were things get a little confusing. He said that he knows that the pathologist report showed that the tumor was benign, but the lab did a more thorough test and found some malignant cells. He believed that Seth had lymphoma. He did not want me to get the antibiotic and wanted me back at the hospital first thing in the morning. To tell you the truth, I had no idea what lymphoma was exactly, but I thought cancer. I did not know what to do. I took Seth back to my mother's house so that I could get things straight in my head, and called those who needed to know. Seth felt the tension in the family. I did not want to tell him anything yet. He had one free day, before going back to the hospital. I wanted to give him at least one more day as a normal kid. The best way to do this was to take him to McDonalds and play whatever he wanted. It was a great night.
We headed down to the hospital early the next morning. Seth was not vey happy to be going back. He kept repeating that he was not sick and that he did not know why he had to go. He still was running a fever but was still eating and drinking fine. I really did not know how to explain all of this to him. I explained that his neck had a bump on it and the doctors needed to find out more to help get the bump off of his neck. He excepted this for now.
When we got to the hospital and checked in with the receptionist, she showed us a different entrance and waiting area to use for all of our visits. There are also sick children being seen by doctors and the hemotology/oncology kids needed a safe room away from infections, because their immune systems were so weak. This was very difficult to understand because not everything had sunk in yet.
Seth saw the hemotolgy/oncology doctor. The doctor did a physical examination and reviewed the results of the biopsy. He then explained to me that he believed that Seth had leukemia and that he needed to do a bone marrow aspiration to find out more. He then explained that the C.A.T. scan showed that no other lymphnode was involved, but that he found the reason for his fever, Seth had a sinus infection.
Wow, first I had to deal with lymphoma and now possibly leukemia. On top of that he had a sinus infection. Dealing with cancer is one thing, but when they throw in something such as a sinus infection, and make it sound like they found the answer to a million dollar question, it was almost too much to deal with.
First thing they had to do was get an I.V. started. Seth really does not like needles, but had gotten a little better after being poked so much the last few weeks. When they were ready to begin, it took two nurses to hold him down. He was screaming so loud that it was tearing me apart. Nobody should have to see their child struggle so much, and this was just the beginning. The doctor asked if I wanted to be in the room when they did the bone marrow aspiration, I thought it was best if I was not. I did not think I could handle the situation very well and did not want to get in their way. Seth went with them to the procedure room with no fight, he was tired out from fighting them with the I.V.. The doctor said it would not take long and shut the door behind him.
It seemed like an eternity before those doors came open again and they all came out. I knew that Seth would be given some drugs to help with the pain, but I was surprised to see so many smiles on everyone's faces. The doctor said that Seth was great. The doctor informed me that they had a conversation about the Power Rangers and Seth decided that he was the Red Ranger and the doctor was the Green Ranger. He told me that I had a great kid and that he was very entertaining. He did not cry or fight once, but talked, to him and the nurses the whole time and kept asking him what he was doing. The doctor told him that they were looking for bad guys in his back. Seth kept trying to look and got a little agitated with the nurses for not leting him.
About an hour went by when the results of the bone marrow came in. Seth cotinued playing in the waiting room with a family friend, while I went with the doctor to his office to discuss the results. I could feel my heart pounding and the room just seemed way to small. I looked down at my hands and could see my knuckes beginning to turn blue from clutching them so tight,waiting for what the doctor was about to tell me.
He began by saying that what Seth has is called BURKITTS LYMPHOMA. He would explain more in detail what that was later. He informed me that the bone marrow aspiration showed some cancer cells present. It was a reading of just 32%. This made the doctors believe that Seth had only had the cancer in his body about one month give or take a week. He then explained that the treatment for this type of cancer was very aggressive chemotherapy and that needed to be started as soon as possible. He wanted to admit him in the hospital right then and get him started. I agreed with the doctor's plans and we started the paper work of getting him prepared for admission.
Now a little break in the story to explain a little bit about Burkitts Lymphoma. This particular cancer is linked to the Africa. Interesting enough, the same regions as malaria and yellow fever. It is one of the most common childhood tumors in Africa and is very rare in the western countries such as the United States. There are two types of Burkitts Lymphoma, African and non-African. African Burkitts begins mostly as a jaw or orbital tumor where non-Africans usually begins as a abdominal tumor. Burkitts Lymphoma, both African and non-African, is one of the fasted growing malignancies in humans. To give you an idea just how fast, the Burkitts cancer cell doubles in size every sixteen hours.
Seth's particular form of Burkitts was rare in that the tumor grew outward instead of in towards the eye socket and brain. We were very fortunate that it did. We found the cancer very early.
The doctor began to inform me of the chances of survival. With the cancer in the bone marrow Seth had a stage 4 cancer. Although this was a very rare cancer, there had been alot of progress in the last two years. The United States is using a protocol that was formed in France. Statistics show an 80% chance of complete remission if the cancer cells had not yet found there way to the brain. The doctor felt that Seth probably would not have any cells in his spinal fliud, but with there being some in the bone marrow, he needed to do a spinal tap to be certain. The test would be done tommorrow morning. If there happen to be any cancer cells there, the statistics show only a 20% chance. My body started to go into shock, but before I could break down, there was a knock at the door and Seth needed me. He could tell that there was alot of tension in the air and he wanted to be comforted.
At this time we were escorted through the hospital clinics to the childrens hospital and up to the cancer ward. The walls were all decorated with pictures that kids themselves had painted or colored and there was a huge mural near the elevator of a fish talking on a telephone, and another one dancing. Seth was in awe of the playroom size and selection of toys. That was nothing compare to his private room. The cancer pod is closed off from the rest of the floor by a set of glass doors. You then go through your own private door. They already had Seth's name on the door with hearts all around it. We walked in and Seth had his very own tv, vcr, and super nintendo. There was the bed of course, a couch that is an extra bed for parents, a sink to wash up with, Plenty of cabinets for medical supplies and personal belongings, and a nice size closet. Then there was another door that opened up to a large bathroom with bathtub, shower, sink, toliet, and lots of room. Seth was running around like he was lord of the manor. Nobody would have guessed he was just diagnosed with cancer.
The nurses came in and put a fresh I.V. in and began running fluids. They explained to me that the more fluids that he has running through his body the less damage the chemotherapy would do to his body. Wow, things were certainly moving fast. The doctor came in and started to explain to me the protocol they use and an experimental trail that was being run internationally. I had a choice and he needed to know which one I thought we should procede with. The two protocols were very similar. The experimental trail was to see if given smaller doses of chemotherapy, would there still be a good rate of remissions(cures) as with the heavy doses in the original protocol. The original protocol was the one they borrowed, for lack of another term, from the French. It is a very extensive chemotherapy protocol in a short period of time( 6 to 9 months).
This was a difficult decision to be making in such a short period of time. I was not sure if the decision I was making was made for the right reasons. I thought that the shorter version of chemotherapy was too risky. The doctors had found the cancer early since Seth only had 32% in his bone marrow. I was too afraid to try the experimental study in that the doctors had just one good chance to get rid of the cancer. If the cancer was to return he would only then have a 20% chance of making it and would need a bone marrow transplant to do it. With the speed of the cancer growing in his body it was too much of a risk for me to take.
The doctor wrote the orders for the chemotherapy and said the first set of drugs would be up in about four hours, giving the fluids enough time to get Seth's juices flowing so to speak. Then he said he had a few more things to discuss with me.
There was a discussion on central lines. Most cancer patients use central lines to get there chemotherapy, other drugs, and blood samples for daily counts. In younger children this was extremely easier on them because they did not have to be poked so much. There were two kinds that the doctor wanted me to consider, a broviac, and a metaport. The major difference between the two was that the broviac was a visable tube that came out of the chest and the metaport laid just uder the surface of the skin. I chose the broviac for the reason that even with the metaport they would have to poke the skin. The operation was to be scheduled after the first round of chemo. that would last the next four days. I asked the doctor if there was a possibility of Seth getting hame after the first round of chemo and before the operation if just for one day. Seth's fourth birthday was in a week and knowing that he would be in the hospital for that I wanted to be able to give him a birthday party with his friends before he got too sick. The doctor agreed to give us two days as long as he did not develop a fever. We would have to return to start the next round of chemotherapy right after that, the cancer was too fast spreading to give him any more time.
The chemo started without any difficulties. I keep waiting for the side effects to take place. I knew that they did not happen that fast but I was trying to prepare myself for the worst. Instead Seth acted no different, he wanted to play super nintendo all night but soon got tired and went to sleep. The first night in the hospital was full of emotions I had never experienced. I did not sleep and all, the noises from the machines and other patients was shaking me. I was glad to see the sun come up and Seth begin to stir.
Seth was ready to go home. He kept telling everyone that he was not sick. Being three almost four years old , he could not comprehend what was going on and was getting angry . I sat him down and explained to him that he had "bad guys" inside his body and the doctors were giving him power rangers magic medicine to go in his body and fight the "bad guys." This calmed him down some but I knew we had a real long road ahead of us. He then was was taken to another room for his spinal tap. They gave him meds to calm him. They reacted more like halucinating drugs. He kept telling me there were pretty lights everywhere and when they put in the chemo drugs he anounced to everyone that he could feel the magic medicine going through his body, down his arms and legs. He then decided to give all the doctors and nurses a specific color and they would all be the power rangers. Seth of course had to be the red ranger. The doctor was green and the nurses were white blue and yellow. I was given the color pink. He came through the procedure in good spirits and with no side effects. We later found out that there was no cancer cells found in the spinal fluid. This was good news. As the week progressed I finally began to realize exactly what was going on around me. I cried at night when Seth was asleep. I hated seeing him go through all of this. He was so small and being a single parent, he meant the world to me.
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