Families

The Cost of a Cure: A Parent’s Perspective

by Dan Feltwell
October 24, 2013

No cost is too high to give our children fighting cancer a cure.

Danny

Five-year-old Danny was diagnosed with T cell lymphoblastic lymphoma when he was 2.

As parents, we do whatever it takes. And with great sadness, sometimes we cannot do or spend enough – some of our children succumb to this disease.

The price my son has paid for his road to a cure has been high. He has lost 30-plus months of being a developing child. In those 30 months, we lived at the hospital longer than we were able to be home.

The pain and suffering my son has endured could not accurately be put to words. The mental effects on him have been great and the physical effects have been even greater, with possible long-term or permanent side effects from chemotherapy. I will never know what late effects from treatment he may have until they appear, and I pray that they never come late at night or early one morning and ravage my beautiful little boy.

The monetary costs have been astronomical. I left the only job I had the day I rushed my son to the hospital, and as a single parent, that was our only income. My son’s health care costs are well into the millions of dollars. I have spent my life’s savings, my retirement account, and what little money I have been able to earn in the last 35 months.

Danny-playing-guitar

Danny is now five months post-treatment and shows no evidence of disease.

I would spend everything all over again and again just to be where we are today. I am a truly blessed man because I have my son with me today, so do not think I am not grateful. It is really not about the money I have had to spend. It’s about something so much greater — it is about saving my son’s life at any cost.

What has been taken from me is my peace of mind. I can never really have a clear mind, to be worry-free and go on without thinking about childhood cancer and a recurrence. Childhood cancer will be a part of me forever.

I know a lot about the facts of this disease and the treatments we must give our children, and in some way this has empowered me, but I know too much. I have knowledge that no parent should ever have.

I will always worry about this monster coming back to try and take my beautiful little boy. I worry more now that my son has finished treatment, and at times the mental anguish seems unbearable. Danny will not be getting the chemotherapies that have saved his life, even though they have physically hurt him.

Dan-and-Danny

Dan Feltwell, left, with his son during treatment. “I will worry every day of every month because I do not know if or when childhood cancer will take hold of my son again,” Dan says.

Has my son received enough chemotherapy to keep his cancer from coming back? If it does, can we save his life again without causing him further harm? These are questions that have no answers, questions that haunt every parent of a child with cancer.

I will worry for a very long time after we end this part of our journey. I will worry every day of every month because I do not know if or when childhood cancer will take hold of my son again. I worry because I know the statistics and the facts of pediatric cancer — I know too much.

This cost of worrying about childhood cancer is only second to losing your son or daughter to childhood cancer, and I believe that neither is acceptable. We should never lose a child, nor should we ever lose our peace of mind, but these are our only two options.

Danny is now five months post-treatment and in remission. He has no evidence of disease, but we still fight, today and every day.

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