 I wanted to share another story with you this time a story with a difference.One full of hope and faith with a brighter tomorrow. A family who held together and put there faith in God.  This Is Jacob's story writen by his Mother Amy: Jacob was born in January of 1990. He was my first and after 31 hours of hard labor, I would have been proud had he been a warthog! I was 18 when I had him so, all of his life, we've been growing together. Last February (1995), when Jacob was five, he started complaining of being really tired and his eyelids drooped all the time. We thought he was coming down with something, even though he had never done that before. Then he started complaining of “seeing two of everything”. I let that go for two days because I wasn't sure he was expressing himself correctly. When he woke up the second day and said: “Mommy, I'm tried of seeing two Winnie the Pooh’s, I knew it was time to see a doctor. My husband and I thought maybe he had a sinus infection or maybe some kind of eye ailment - we had no idea it was a tumor. Saturday morning, February 25, I took him to see his pediatrician. She suggested that he see an opthamologist sometime soon but, she did not feel that it was extremely urgent. By that evening, he had started falling down, falling off things, and complaining a lot. By now, we had some serious concerns. Monday morning, February 27, I took him to Kentucky to see an opthamologist. After careful examination, she suggested some blood work. She said she did not feel like Jacob had a tumor. His optic nerves were healthy and that is one of the best ways to detect a brain tumor. When the blood work came back on Tuesday, it was normal. Now hispediatrician thought that maybe he had a virus; more waiting. By Wednesday, Jacob's equilibrium was so bad he could be sitting still on the couch, lose his balance, and fall to the floor. He and his sisters thought this was SO funny! But I really had a bad feeling. I kept calling the pediatrician with my concerns. She set up an appointment with a neurologist for that day. When we met with the neurologist, he tested Jacob in ways that no one had done before. He asked Jacob to squeeze his hands to see if oneside was weaker than the other. And, indeed, his left side was weaker. He tested Jacob's reflexes, how well he could follow a pen with his eyes,walking, hopping, etc. He ordered a CT scan immediately. Jacob had seen a lot of doctors so far but, nothing had been done to him but a blood test. When he saw the CT scanner, his eyes welled up with tears,mine did too. The CT itself doesn't hurt but, it makes a lot of noise andcan be very intimidating. I held my sons hand and we prayed together as they were taking the test. The doctors kept looking at me and my son with the strangest expressions. We could see each other through the protective glass. I knew something was up. After sometime, the doctor came in and said Jacob needed contrast (a special die injected by IV to aid in seeing thebrain). Jacob cried and so did I as they stuck him. When the test was over, the doctor showed me to a chair and asked me to sit down. I did. When he told me it was a tumor, tears rolled down my cheeks. He explained to me that to get a better idea of what they were dealing with, Jacob needed an MRI (magnetic resonance imaging). Asked the doctor if this was serious. He looked at me and, with the eyes of a loving father, he said, “Yes, it is very serious.” He held me in his arms as I cried. We admitted Jacob that night to the children's hospital to get him prepared for his test in the morning. My husband and I stayed there inthe room with him as he slept peacefully, totally oblivious to the tragedy all around him. All night, I sat by his bedside and cried. I knew that all brain tumors were serious no matter which way you looked at it. The nurse brought me pamphlets to ponder on. I thought about my son dying, what I was going to tell my two young girls, and just how I was going to cope with the devastation. When the doctors came back with the results of the MRI, the news was not good. Jacob had a brainstem mass and because of the critical area, any surgery would be risky. They gave us the options of: doing nothing,trying to remove the tumor (which would almost certainly end in death), ortrying to biopsy it and go from there with treatments of radiation and possibly chemotherapy. We decided to go with the stereotactic biopsy. This procedure involves placing a “halo” with little screws around the head andinserting a small needle down through the scull and extracting a piece of the tumor for study. They sent Jacob home on a Friday night, March 3, with large doses ofsteroids to reduce the swelling in his brain before the surgery, the following week. On the morning of Jacob's surgery, I was a mess. My husband was so calm, a tower of strength. We knew the risks involved and it really scared us. If Jacob were to lose as much as 5 mL (a teaspoon) of blood, he would die. After four hours of waiting, with family and friends huddled around us,the surgeon came out and said that Jacob came through the surgery fine. But, we had to wait three to five days for the pathological tests. Jacob stayed in ICU that night. We took turns going back and sitting with him, as they would only allow one of us at a time. This was the only time my husband and I were separated during his care. The nurse came in every two hours to check on him. If my husband was with him, he had to come and get me because Jacob would not let anyone examine him unless I was there. When the pathological tests came back, they showed that Jacob had a brainstem glioma. it was a growing mass with terminal capabilities so,it was labeled malignant. As soon as we knew what we were looking for, we started doing research. The doctors avoided the most important question in our minds ~ how much time did we have left with our son? The research gave us the answer to this question, 12 -16 months. The only treatment the medical profession had to offer was radiation therapy twice a day. Then, if the tumor responded, chemotherapy. Jacob stayed in the hospital three days after his surgery. The steroids were starting to show some of their ugly side effects: edema, weight gain,mood swings,increased appetite, and it can change the chemical levels in a person's blood. Jacob was just at the beginning of these symptoms, on a small scale. They sent us home on a Friday ~ one week and two days after he was diagnosed. All of this happened so fast! The following Wednesday, Jacob began his radiation therapy. It didn't hurt and it didn't involve needles. Jacob was fitted with a special mask that was marked with the area of where the radiation went in. The mask has a dual purpose: they didn't have to mark on Jacob's skin and it held his head still. When he had a treatment, they would lay him on a table. They would put the mask over his face and clamp it to the table. The actual radiation took about 90 seconds. That was the only time I wasn't in the room with him. I watched from the desk on a video screen. The first day of radiation went well. The second day he started vomiting. It was hard for the doctors to diagnose the vomiting since it can be caused by several things: increased cranial pressure, a side effect of the radiation, or it can just be a virus. At any rate, his doctors were concerned because he couldn't keep his medicine down. Without his medicine, he would die. So, back to the hospital he went. While he was in the hospital, we had to be transported by ambulance two times a day to his treatments. He loved that! Sometimes the drivers would turn the sirens on for him. The chemistry's in Jacob's blood were changing fast. He was still vomiting for no known reason. They drew blood from him twice a day. This got to be a real challenge. Each time it got harder to find a vein that could be used. He was so small that a lot of the time his veins would collapse. Sometimes, it would take two or three tries just to get on tube of blood. Jacob and I got real good at finding “good ones” for the nurses. Jacob would stay calm as long as they would try for the vein he suggested. Otherwise, they had to hold him down. My husband and I slept in the room with his every night and my two little daughters stayed with friends. This hospital stay was nine days long. When they got his chemicals in his blood stabilized, they sent us home. By this time, we were ten days into treatment, twenty-five more days to go. We lived one hour from the treatment center. It was too hard for me to drive everyday and make arrangements for my other children so, we took our aunt and uncle up on an offer to stay with them. They lived about fifteen minutes from his treatment center. So, for the rest of his treatment time, we lived in their home. That took some adjustments, along with the idea that our son's illness was very serious. We thought about other stories of children with cancer and other related diseases that we had heard of. We really understood the anguish, despair, and hopelessness a parent can feel. Our other children were also having trouble adjusting. Our middle girl was four and the baby turned a year old during his treatments and took her firststeps at the treatment center! They wanted and needed more time that I had to give them. I experienced a lot of guilt because of not being able to take care of them properly. My mom worked at a daycare center and they graciously allowed the girls to stay there, free of charge. Mom would keep both girls with her. They both cried, everyday. Especially the baby. She would scream and reach for me and I had to just turn away. After about a month of taking the steroids, the symptoms took full charge of his body. He had gained 10 lbs. He began having joint pain and troublewalking. He couldn't climb a flight of stairs. It was heart wrenching to see him this way. He was like an old man. We applied for disability for him and it was approved. Jacob was also allowed to have one wish granted. He choose to meet Mickey Mouse. In April, 1995, Jacob had another MRI. It showed that he had a 33% reduction in his tumor. That was great news! We had been given an extension on his life. The first week in May, he had his last treatment. We had a party for him with a cake, games, and party favors. He had been so brave and such a good patient. And best of all, we got to go home. Now that we are home, things are really different. We left with a healthy, active five year old. We came home with a disable, sometimes bedridden, five year old man. Jacob's health is still deteriorating due to the steroids. Now he has gained 26 lbs. He's in a wheelchair whenever we go out. He has a nurse that comes in to help with his care. He watches a lot of TV, colors,and plays video games. He cant go outside by himself. His stomach aches constantly but, he is home. We are so thankful to all be together as a family again. Jacob's moods have also been better since we've been home. As for the future, we will just have to wait and see. We have investigated many treatments in alternative medicine. Right now we have him on a number of herbs and are beginning the transition to a totally organic diet. Our savings are depleted and every cent goes toward Jacob's diet and care. In July, Jacob gets to meet Mickey Mouse in Florida. In August, he's starting Kindergarten. After that, it's a waiting game. He still sees his doctors once a week. They keep an eye on his symptoms and try to keep him comfortable. Our family mourns for the part of our son that we have already lost. Each day we pray to be good parents and be sound in our thinking and judgments. We try to treat each of our children the same and keep their lives full of continuity. Hopefully, someday soon, we'll have a cure. *Update* It's now 1999, Jacob is 9 yrs. old, and starting 4th grade in August. Many things have happened to us since this time in 1995. Jacob has been hospitalized several times, though most of them were concentrated in 1995-1996. He has some behavior difficulties, rages, memory troubles, balance problems, double vision, and he is a hopeless hypochondriac. He has had recurrent bronchitis and even suffered with the shingles. His last MRI showed no tumor and not even any residual tissue. He still sees his neurologist on a regular basis. He is free from all chemicals and medicine at this time and we have long abandoned the organic diet. He still takes vitamins and herbs. He did start Kindergarten. The state had to hire a teacher to come in and teach him, as he was on a feeding tube (NG) most of the fall of 1995. We sent him to the public school for the second semester but, he missed so much, we made the decision to home school. My girls are fine though, both are clingy, especially the baby who is no longer a baby. She is five and starting Kindergarten herself this fall. The middle girl, Leighah, is starting the 4th grade with Jacob. My husband and I just celebrated our 10th wedding anniversary. This whole nightmare has made us so strong and reliant on each other. We are truly best friends and totally dedicated to our children and each other. He is currently working as an electrician. As for me, I am a stay-at-home mom. I would love to go into nursing after all my experiences but, home is where I need to be right now. I still live on pins and needles, watching Jacob for signs of reoccurrence but,so far, so good.Jacob had an MRI on July 7, and it showed a normal brain with no changes. Amy and her family were blessed with extra time with Jacob.He is beating the odds. There is still the chance that the brain tumor could come back but I truely believe it will not.God will lead the way. God bless you Jacob, we love you((HUGS)) May I always turn to you. There is peace within my spirit By the wisdom of Your Way, For Your grace is everlasting, Giving strength to live each day. Though the clouds arise, and starless skies bring fear into this heart of mine, I'll always turn to You, May I always turn to You... Lord, Your Word's a Light unto my path, A Lamp unto my feet. You have brought me to Your throne of grace, And in You I am complete. Though at times I sail the stormy sea, And the answers are not clear to me, I'll always turn to You, May I always turn to You, I pray. Now I greet the dawn as daylight comes; With joy inside this soul of mine, I turn my heart to You, For Your love is shown anew Today!
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