September is National Childhood Cancer Awareness Month – One Local Family’s Struggle
There are more than a dozen different monthly awareness campaigns each year for various types of cancers, four of them in September alone. All of them are beneficial in educating... the masses about the different forms of the disease and what we know about it or helping those who have it live longer, more fulfilling lives.
The best-known and most publicized campaign is National Breast Cancer Awareness Month in October. Perhaps the least known and publicized is this month's campaign for childhood cancer.
This oversight is tragic, but in keeping with a disease which has always been under-acknowledged and is vastly and consistently underfunded.
This point has been reinforced to me several times in the last year by a courageous father who is fighting for his young son, a victim of childhood cancer. Dan Feltwell is a single Dad from Margate whose four -year-old boy Danny has had a rare type of cancer for more than half his life.
As part of a month-long series of blogs focusing on childhood cancer during National Childhood Cancer Awareness Month, I give you Dan and Danny's story in Dan's own words. I encourage you to leave your thoughts, experiences and best wishes for the Feltwell family in the comments section below.
September 3rd, 2012
Danny and I have been in AI duPont Hosp since last Wed. because of side effects of Chemotherapy and an adverse reaction to new meds. St. Baldrick`s Foundation asked me if I would write about our Journey and how it is as a single parent raising a young child with Cancer. I wanted to share this writing with you.
Our Journey through Childhood Cancer
On Nov. 15, 2010 I had taken my son Danny to our Pediatrician for what I thought was a chest cold. Our Pediatrician thought this to be the case with Danny and we treated him as if he had a chest cold. Exactly one week later on Nov.22, 2010 I rushed my son to the Hosp. for what became so much worse, Childhood Cancer. At that moment Cancer was killing my world and the other half of me, my son.
We knew that Danny had a Malignant Cancer, Danny`s tumor was larger than his heart and originated in his Thymus, but we could not get a diagnosis. Danny was on a steroid regiment the week prior for what we thought was a chest cold which made it very hard to obtain a diagnosis. On that 9th day in the Pediatric Intensive Care Unit Danny was diagnosed with T-cell Lymphoblastic Lymphoma. Then Chemotherapy needed to start right away, Danny needed a Spinal Tap with Intrathecal Chemotherapy to treat his Central Nervous System immediately. Then Danny needed far too many more Chemotherapeutic Drugs over the next 2 ½ years, with the most aggressive coming in the first year. I thought, "No this cannot be true, this cannot be happening!". I thought "No Please not my 27 month old little boy, we only have each other and he is all I have!". We spent a total of 14 days/nights in the PICU then moved to the Oncology wing of the Hosp. Danny had to receive a very aggressive Chemotherapeutic Protocol in order to save his life but what came next I could never have prepared for.
I watched my son, never leaving his room, become so sick with treatment. I watched my son have very severe side effects from the very same medicine that will save his life. I became sick myself, I lost weight because I could not eat, I could not eat because I would not leave my son, I could not leave my son because he is my life, so I never left my sons side. Although Danny`s Cancer has responded to Treatment his Treatment was and is very difficult on him. We spent well over 250 days/nights as an inpatient the first year and many more since (well over 320 in total). This was because of the severe side effects from Danny`s Chemotherapeutic Protocol and many infections, most of which came in the first 7 months. Danny is having issues with side effects to this day but we have learned how to treat and maintain Danny through the end of his Chemotherapeutic Protocol, which will end April of 2013.
When we needed to postpone Chemotherapy, skip doses of Chemotherapy and reduce doses of Chemotherapy to 50%, to this day, I worried and I worry now. I have been raising and nurturing my beautiful boy since birth and as a single parent since he was just 18 months old. Danny is all I knew, he is a part of me that I cannot explain, Danny is my beautiful little boy. I could not explain well enough to my son that we needed to make him hurt in order to save his life. This hurt me not being able to explain, but how do you explain all of this to a 2 year old little boy. All I knew was to give him all of me and learn as much as I could, but there is never enough time. I needed to fight for my little boy in a way I knew nothing about. This anguish I felt for my son could only be described as a deep, very deep anguish. So I learned all I could in such a short period of time and in some way this gave me a feeling of control when I have none.
We are now into Danny`s 22nd month of Treatment, which has slowed down quite a bit and Danny is doing well. We still fight through Treatment and the side effects of his Chemotherapy, but the most important thing is we still fight. When a Child is diagnosed with Cancer that Child becomes a Child of every Parent who has a Child diagnosed with Cancer. We as Parents, whether single or not, become Family and Friends. We help each other and our Children together.
My wish is that I would never have written this and that No Child would ever have been nor will be diagnosed with Childhood Cancer. But I also know that there are Parents and Single Parents Fighting for their Child who is Fighting Childhood Cancer. I know we are not alone, I know there are more Children Fighting Cancer. I know that there are Parents like me. As a single Father I felt so alone when Danny was diagnosed, I felt so alone during our long Hosp. stay, but I know we are not alone and we have our Family and our new Family and Friends to help us along the way. Yet this makes me sad because I know we are not alone, there are more families just like us.
Danny and I have been truly blessed because we have each other today, so today we celebrate, Danny just turned 4 years old, and love each other more with every day. What has worked for me to find comfort, solace, or support was to reach out to the Childhood Cancer Community, to embrace this battle against Childhood Cancer. With my family I found that people grieve in different ways, some stay quiet and some find it very hard to accept and deal with and others jumped in to help but no one grieved as I did. Yet I also knew that my son needed me to be at my best, to make decisions, to comfort and care for him, to be as strong as he is but also to be as tender and loving as I could be. Danny and I have been blessed with another day together so we make the most of our days and continue on this Journey through Childhood Cancer.
Childhood Cancer is real and unforgiving.