Research that Benefits Children and Families—Uplifting Stories

For my course in research this week, I was asked to share a personal story of how research has benefited someone I know. My husband and I were married in 1978 and had great difficulty getting pregnant. We were truly surprised and blessed by our first child - a beautiful baby girl in September of 1987. When our daughter was 3-years-old, she began having health problems. By age 7, she was diagnosed with an inoperable brain tumor.  She was given two years to live. You can’t imagine the emotional distress and pain we felt knowing that our little girl, that we prayed for for so long, was going to die so young; not only die, but suffer a horrifying, painful experience as well. We were told that as few as ten years prior to this time, an MRI would not have even been able to detect this tumor since it was so deep in her brain. We were amazed and glad that we lived in a time when the medical profession seemed to be so advanced. The leading oncologist on the case said that “even though we know a lot about the human body, we just don’t know that much about the brain.” That surprised me. Knowing that doctors could remove a heart and give someone a new one, how could they not “know that much about the brain”? My daughter underwent chemotherapy once-a-week for a year (enough for a 300-lb. man), months of radiation, four brain surgeries and monthly hormone shots for three years. If it were not for the relentless work of countless researchers and people subjecting themselves to this research, chemotherapy, radiation and hormone therapy would probably not have been in existence or available to my child.

According to Wikipedia, “As is obvious from their origins, the above cancer chemotherapies are essentially poisons. Patients receiving these agents experienced severe side-effects that limited the doses which could be administered, and hence limited the beneficial effects. Clinical investigators realized that the ability to manage these toxicities was crucial to the success of cancer chemotherapy.

“Several examples are noteworthy. Many chemotherapeutic agents cause profound suppression of the bone marrow. This is reversible, but takes time to recover. Support with platelet and red-cell transfusions as well as broad-spectrum antibiotics in case of infection during this period is crucial to allow the patient to recover.

“Several practical factors are also worth mentioning. Most of these agents caused very severe nausea (termed chemotherapy-induced nausea and vomiting (CINV) in the literature) which, while not directly causing patient deaths, was unbearable at higher doses. The development of new drugs to prevent nausea (the prototype of which was ondansetron) was of great practical use, as was the design of indwelling intravenous catheters (e.g. Hickman lines and PICC lines) which allowed safe administration of chemotherapy as well as supportive therapy” (May, 2011).

While someone could say that knowing you were dying of cancer might make it easier to subject yourself to clinical trials for medicines, I can’t imagine being in that position. The shock of being told you or a loved one has cancer is unlike any other diagnosis. I greatly admire any person who was willing to undergo clinical trials to further medical research. You might think that participating in any research to save your own life might be selfish, but I see it as completely unselfish. The diagnosis and treatment of cancer has only come about because of researchers who were passionate about curing cancer and people who were willing to suffer so that my child might live.

Candace is now 23-year-olds. She has a little sister who is also in college. She attends college, lives at home and works full-time. Even though she is legally blind, she can drive within a few miles of home and has a level of independence that we were sure she would never attain. Candace is a tenderherated, compassionate, caring person. Everyone who meets her is amazed by what she has suffered through. She rarely talks about it and doesn't want people to know. She wants to be "normal". Every birthday is a celebration – a blessing. Not only do I thank God, but I am truly grateful for the knowledge, research and sacrifice of all those who have come before – who made her treatment possible – who gave us options other than just the inevitable diagnosis of a painful, premature death.

Wikipedia (May 3, 2011). Retrieved from http://en.wikipedia.org/wiki/History_of_cancer_chemotherapy