The Trip Down the Road of a Life-Threatening Illness

Delta Winds: A Magazine of Student Essays
A Publication of San Joaquin Delta College
2003

The Trip Down the Road of a Life-Threatening Illness

Tajmah Jones

In the days before my son's diagnosis, my family's life was like any other's - my family was made up of my husband, my two children (both under the age of three) and myself. My husband and I both worked; he worked during the day and I worked in the evenings. We were a typical young American couple trying to survive and pay the bills while still juggling a family life. During this much simpler time in our lives, before we had ever been faced with a life-threatening disease in our family, I had never realized how the effects of such a disease could spread way beyond one's health. But once Leukemia invaded my baby boy's body, not only did it change his health, but it also invaded and affected our whole family in many different ways.

Anthony's health started to deteriorate at the end of May 1998. Within a few weeks, we realized something was seriously wrong. On June 10, 1998, Leukemia became the diagnosis for my son. My son had changed from an extremely active, rough-and-tumble little boy into a severely weak, lethargic and sick child. It was heart wrenching to watch this disease suck the life from his tiny body, but what was equally as hard to watch were the effects of the chemotherapy and medical procedures that were required to save his life.

The painful procedures, I believe, were the worst for Anthony and us, as parents. A child only used to having small needles from a booster shot prick him was now being dug into with gigantic needles long and thick enough to travel through the bone in his hip or to reach the spinal fluid in his spine. My husband and I, week after week, would try to calm our child during spinal taps and bone marrow aspirations as he would kick, scream, and cry. Finally, we fought with the doctors and forced them to allow sedation for him, but our son's emotional anxiety about these procedures never went away. Today he is still a severely anxious and fearful child.

As for the chemotherapy, although it was used to rid him of cancer, it also had many serious negative side effects on his health. Our son lost his hair in clumps. Eventually, we ended up shaving it all off, and to help him through this, his daddy shaved his head too. At times, our son would develop sores in his mouth and throat, making it impossible for him to eat solid foods. I tried to make it better for him by allowing him to have a diet of chocolate pudding, but it could not ease the pain completely. In the future, he may not be able to have children due to chemotherapy. Neurological problems, developed since his chemotherapy began, have caused problems with his fine motor skills. He now walks on his toes. Chemotherapy also depleted his immune system, which made him tremendously susceptible to any cold, flu and infection.

Because Anthony's immune system became severely low, we had to change many personal habits also. Constant hand washing before touching Anthony or after he touched anything became a part of our routine. He could no longer eat fruit with skin or have plants or flowers around him because of the pesticides. When we were in enclosed areas with many people, he had to wear a mask. The house and his toys had to be cleaned thoroughly to rid them of any unwanted bacteria or germs. Despite all these precautions, at times he would still catch a cold or the flu. When someone with a normal immune system has a cold, that person can usually simply buy an over-the-counter medication and his or her immune system would fight it off, but for Anthony it was different; it usually meant a trip to the hospital and sometimes a hospital admission. As a matter of fact, the Hematology/Oncology ward and clinic at the Sacramento Kaiser was our home away from home.

Immediately following my son's diagnosis, we were admitted into the Hematology/Oncology Ward of the Sacramento Kaiser. Anthony and I were there for a month. After Anthony was healthy enough to return home, we still had to return to the clinic in Sacramento three times a week, at first for his chemotherapy and medical procedures. Our lives had become a whirlwind of appointments. My family became close to the staff and the other families at the clinic who also had children with cancer. During this intensely straining time, we appreciated having individuals to talk to -- individuals who understood our exact same pain. Through these people, we discovered support groups and events for children with cancer that we still attend to this day. These became a special part of our lives.

Anthony also had a favorite nurse that he looked forward to seeing each time he had an appointment; she would kiss away his "owies" and find Power Rangers in his ears. These were wonderful people who we only met due to my son's illness, but who made our lives much richer. In a sense, we had a new family at that home away from home. More time was spent at that clinic and in the car than at our true home, but it was necessary and that was all that mattered. Our schedules had changed drastically; the days of coming and leaving to work and home were a memory. Not only had the clinic and the hospital become our new home, but also caring for my son had become my only job.

Once my son's doctor spoke to us about what caring for a child with Leukemia would entail, I realized I could not keep my two part-time jobs. Time was precious now, so I quit two waitress jobs to stay at home and care for my sick son and his little sister. Due to the loss of income, credit card bills went unpaid and other bills fell behind. Paying the bills were no longer my family's first priority as before; saving my son's life was. With help from many cancer organizations, we paid what we could, but eventually filing for bankruptcy was the end result. To me, it was worth the consequences of having a bankruptcy on our credit report. There was no way I could have worked to pay those bills and taken care of my son at the same time; life had become too stressful.

With the busy schedule, the emotional pain, the fear and anxiety that my child might die, the new financial strains, the absence of my home and family, and the continual exhaustion, I felt the stress was enormous. Not only was I under tremendous pressure, but my husband was also. While holding all the financial pressures upon his shoulders, my husband had to continue working his regular job and was unable to see his sick son as often as I was. Anthony, too, had emotionally fallen apart; he was a young three-year-old child who could not understand why this was happening to him. Due to the confusion and stress he was under, he would act out with poor behavior. As for my little girl, she did not understand why she was left at Grandma's all of the time and she was under stress also because of the change in routine and missing her family. Fights between my husband and I began to occur. Many times when there is extreme stress in my life I tend to take it out on the person I am the closest to, which ended up being my husband during this difficult time. Eventually, I sought out therapy for depression. Therapy and the support groups helped me to find peace among the chaos. A play therapist helped Anthony better understand the medical procedures and the reasons for them. Although this was a difficult time in my family's life, there were many things that we gained and learned.

Despite the many negative effects, I can definitely say that I have gained knowledge and awareness that I would never have had if not for my son being diagnosed. When I became a parent of a child with Leukemia, I gained knowledge about the disease and many other types of cancer that I would never have known otherwise. This knowledge helped me to understand the need for better cancer research, donations and fund-raisers. I researched what would be beneficial to my son in case of a relapse and learned about the benefits of cord blood. My youngest child's cord blood is now stored in case Anthony should ever need it. Life with a life-threatening disease in my family has made me aware of how precious life is. I never take it for granted. Our family no longer worries as much about the small stuff and always tries to make time for each other now.

Life since my baby boy's diagnosis of Leukemia has been an extremely difficult road to travel. As I stand near the end of that road, at the point where my son has entered one year of remission off chemotherapy, I understand that my family has learned an extreme amount from this trip. Not all the effects of having a child with Leukemia have been positive, of course; but now I realize that before life may have been easier, but now our family's life is much more meaningful.