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Jacob's Journey
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The
story of our family’s battle with childhood cancer.
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My name is Scott and I am Jacob’s father. It was devastating when we found out about his illness. My wife and I are pharmacists and understand the mechanics of the disease and its treatment. However, we found ourselves searching for more information to help us cope with our fear. After scouring the Internet and talking with friends what was most helpful were stories of other family’s battles. Hearing about their ordeal – their trials, their fears, and hopefully their successes – meant a great deal to us. Now that Jacob is in remission, my family and I want others to know what it is like to deal with this terrible disease – to tell our own story in order to raise a greater awareness of childhood cancer. And hopefully this information will ease the journey of another family through their own traumatic experience with this disease.  The Brief Story In early 2008 we suspected something was wrong with Jacob. He was lethargic, pale and had bags under his eyes. His pediatrician ran tests and didn’t find anything wrong. We thought perhaps he was just run down and needed more rest. In February he had his first of several major nose bleeds – blood literally poured from his nose. By March his left nostril completely plugged up. His pediatrician was perplexed but thought it might be really bad allergies. We tried a nasal steroid spray but it made no difference. An appointment was scheduled with an ear, nose and throat (ENT) specialist, but the earliest we could get in was late July. In May both nostrils were plugged and Jacob could only breath through his mouth. Thick viscous strands of mucous started coming out of his nose. These boogery-ropes disturbed a different pediatrician enough for him to call the ENT’s office and plead for an earlier appointment. The ENT doctor diagnosed it as a lymphoma tumor located in his nasopharynx. It was devastating news to hear that our child had cancer. We were really terrified, but several years earlier, Jacob's mother worked as a relief oncology pharmacist at her hospital. When we got the diagnosis of cancer, she immediately talked to a highly respected pediatric oncologist who gave us hope. Everything quickly fell into place and he was admitted to Children’s Hospital Central California. Burkitts Lymphoma is a fast growing cancer. The tumor in Jacob’s nasopharynx had grown to the size of a small chicken egg and completely blocked his nasal passage. If left unchecked it would have pressed down significantly on his soft pallette, completely blocking his airway. Luckily his cancer was confined to one place and had not yet metastasized. Fast growing cancers, like Burkitts, are very treatable because rapid cell growth makes these cancer cells more susceptible to chemotherapy. Jacob was started on a chemotherapy protocol specifically for Burkitts Lymphoma developed by the Children’s Oncology Group (COG). He responded well and his tumor almost immediately began shrinking. His treatment was broken up into a series of hospital stays. During each admission he would receive multiple chemo-drugs over several days and then be discharged home where he could recover. After regaining his strength, Jacob would be readmitted to the hospital and undergo another course of chemo. This was repeated for five full cycles of chemotherapy. Sadly in between each cycle of chemotherapy my poor little boy’s body had been hammered so hard that his immune system was weakened to the point he would pick up a serious infection. Like clockwork, within a few days after coming home from the hospital after a course of chemotherapy, he would be readmitted for several days of antibiotic treatment. Chemo-drugs (for the most part) cause indiscriminate damage to living cells. Cancer cells grow more rapidly than most normal cells and thus are damaged more easily than normal cells. The idea behind chemotherapy is to administer enough chemo to damage the cancer cells but not so much that the remaining normal cells are severely damaged. The cancer patient is then given a break from chemotherapy so that the normal cells can recover. Then the process is started over again. During each cycle of treatment, the cancer cells are knocked down a little more. Treatment is continued until the cancer is gone. It is usually a long, hard road. Jacob was already weakened from the disease and the chemotherapy weakened him further. He lost his hair and there were times when he had little, if any, appetite. He was usually at his weakest while in the hospital. Sometimes the simple effort of walking up and down the hallways of the oncology unit was too much for him. And there was always the ever present danger of picking up a life threatening infection because his immune system was severely depressed. He had times when he was very sad because he missed his little brother, or home, or not being able to play like a normal eleven year old boy. He disliked being tethered to an IV pole, and needles and surgical procedures scared him. But overall, he faced this challenge – the fight of his life – with a quiet, enduring strength that amazed me. He made his mother and I very proud. It is difficult to describe what it is like being the parents of a child with cancer. My wife and I understood the details of the disease. This knowledge helped. But we were also very scared. The prospect of losing our child – of facing his mortality – was surreal. We knew that he had a better chance of surviving cancer now, in this day and age, than in any previous time in history. We knew that tremendous advancements had been made in treatment options, and that he would receive the best care possible. But we also understood all of the possible ways things could go wrong. Knowledge can be a double edged sword. Once we dealt with the initial shock of learning about Jacob’s cancer, we found that the best coping technique was to take things one day at a time. One of us was always with him in the hospital. My wife would take the “day shift” and I would spend nights with him. The nursing staff was great, and the hospital encouraged parents to participate as crucial members of their child’s healthcare team. It was an added benefit that Jacob’s mom worked as a pediatric clinical pharmacist at the hospital. It made it easier for us to understand what was going on since we “spoke the same language” as the other medical professionals. By the end of October 2008, Jacob finished his last course of chemotherapy and his last hospital stay. A full body PET/CT scan showed no detectable trace of cancer. The entire family was worn out and exhausted. We didn’t feel like we had won a battle – there was no clean cut, definitive victory. It only takes one cancer cell to start the disease going again, and there are limits to scanning technology’s ability to detect very small amounts of cancer in the body. We pensively waited for additional scans and tissue biopsies. Only the passage of time allowed for the accumulation of enough evidence that we felt comfortable saying Jacob was in remission. And that point did eventually come about. Jacob is now doing well. He’s a healthy, growing, teenage boy. His stamina has not completely returned and he easily tires after physical activity. This will improve in time. The whole ordeal with cancer took its emotional toll on each of us, and it has taken time to readjust to “normal” life. Looking back there is something we would change. In the beginning, we would have been more aggressive in seeking a demonstrative diagnosis of Jacob’s nasal problems. If we had pushed harder we would have gotten the diagnosis earlier and started chemotherapy when the tumor was smaller.  If we could give another family facing cancer some advice it would be this: Take things one step at a time. The whole concept of having cancer, going through treatment, getting really sick, is overwhelming. It can easily emotionally incapacitate someone. But know that dealing with cancer is doable. There have been incredible advancements in medicine which have dramatically increased the chances of survival. And don’t be afraid to ask for help. You will need it. There are people out there who will help you – both trained medical professionals and friends and family.
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www.TostePharmD.net
Copyright © 2008-2011 Scott Toste
Copyright © 2008-2011 Scott Toste