Angel of the Month
Jody Fariello is like all Mom's everywhere. She is devoted to her two children, a loving wife, daughter and friend. Raising her family in Ohio, Jody was living the American dream when "life" suddenly derailed in the form of Childhood Cancer.
Jody immediately became a "mother warrior," when her now 3 year old son Roman, was diagnosed with Neuroblastoma on April 25, 2007. Jody not only began advocating on behalf of her own son, but on behalf of the thousands of kids living in the United States with cancer. Realizing that Childhood Cancer is not equally funded as other types of Adult Cancer, that only one pediatric cancer drug has been approved by the FDA in the past two decades, and that the media does not want to show images of sick children with bald heads, Jody set to work.
With her fellow "mother warrior" Debra Nickell, Jody co-founded RALLY 'ROUND THE GOLD RIBBON as a way to bring awareness to Neuroblastoma and all Childhood Cancers. The gold ribbon is the symbol of the disease like the pink ribbon is the symbol for breast cancer. Jody and Debra feel that raising awareness is key to garnering media attention, political support, funding for research, and a CURE.
Q. Please tell us what Neuroblastoma is and how many children it affects each year?
A. Neuroblastoma is an early Childhood Cancer of the Sympathetic Nervous System. It is a solid tumor cancer that originates in the neck, chest, abdomen and pelvis but most commonly originates in the adrenal glands. It is a very aggressive cancer with about 70% of the cases at diagnosis having metastasis to other areas of the body like the skull, the orbits of the eyes, and the bone marrow. The survival rate is a mere 33%. The average age at diagnosis is 2 years. About 500 to 600 new cases are diagnosed each year. There is no known cause or cure for Neuroblastoma.
Q. Your three year old son, Roman, was diagnosed with Neuroblastoma on April 25, 2007. What was your immediate reaction and what did you do right away in terms of his immediate care?
A. Roman was only 18 months at diagnosis. At that exact moment when the doctors tell you your child has cancer, you as a parent must forgo all parental control and give it solely to the doctors. They are the control masters of your child's life from that point on, not the parents anymore. You are literally taken out of your world as you know it to be, and thrown into another world.
Q. Where did you find your greatest strength at the moment of diagnosis and where do you continue to draw strength from?
A. I found my strength that day to be with our daughter Sheridan. With the news, I immediately thought of her. We had to be strong not just for Roman, but for her as well. I still find that my greatest strength is found with both of our children. They are both amazing and teach me every day about strength in different ways
Q. Tell us what Care Pages is and why you became a member of this online community?
A. Care Pages is an amazing online "family" in every sense of the word. It is a great way for you to meet other families walking down the same path, like Childhood Cancer. They become sometimes more involved emotionally with your family's news, than they do with their own personal family members. It is really a great thing to know that we are not alone in our journey with Roman. The feeling of being connected is a positive experience when you feel disconnected with the outside world. I became a member because I wanted to reach out to the other families that were going through the same nightmare as we were; to share Roman's information and maybe give insight to another family on our same path. Also, for the information you get from the other families about the side effects of drugs, reactions, symptoms etc. No doctor can give you the insight that a parent can going through the same thing.
Q. How did Roman's diagnosis change your outlook on life and the world around you?
A. Roman's diagnosis has changed more than my outlook on life, it has changed life itself. I always tell people that we do not look at life anymore through the same old eyes as we did before Roman's diagnosis. Our eyes have new lenses:. We live for the here and now. We live for the moment. We don't procrastinate ever, especially when it comes to the kids. I often tell my non cancer parents that we do not live the same way as they do. We do not look at life the same way that they do. We do things differently than they do. We have been given the chance to live in a different way because we know it could all be taken away from us in a second. Life changes in a second. We are living proof of that.
Q. Why did you start your own organization, Rescue Roman, and what are the goals of the organization?
A. Rescue Roman was actually named by me, but was not started by me. RescueRoman.org was created by a dear friend of mine's husband, Jeff Allen. He and my best friend, Anne, wanted to do something for Roman as a way of getting our story out there and to keep up on our family updates and news about Roman. It has worked well and Roman has quite a following. Since Roman remains "NED," I felt the need to make a difference with awareness for Childhood Cancer. I co-created our Gold Ribbon Campaign and website called RALLY 'ROUND THE GOLD RIBBON (rallyroundthegoldribbon.org), with another Neuroblastoma mom, Debra Nickell. We know there is an immediate need for childhood cancer awareness in general. No one knows about it or likes to talk about it. So, we decided to start our own gold ribbon campaign. Like with the pink ribbon being the symbol for breast cancer, the Gold Ribbon is the symbol for childhood cancer. But no one knows that, and we know that has to change. Our goal is to spread awareness by passing out gold ribbons to wear. Made from satin ribbon and a safety pin, we take orders from across the country in hopes of getting the Gold Ribbon out there and the message that childhood cancer does exist and it is killing our children. We want to see gold ribbons everywhere, in schools, in churches, in malls, and on products. The catch is we do not charge for the gold ribbons. We felt that was the best way of getting the message across our country. We rely solely on donations to keep a never ending supply of ribbon, safety pins and to pay our mailing expenses. It has worked very well so far. We have already mailed out over 14,000 ribbons across the country.
Q. Please tell us about the gold ribbon and its significance of it in terms of childhood cancer.
A. The funding for Childhood Cancer is not what the children of this country deserve. It is not even close to being what it should be. My personal opinion for this is that the media does not want to do stories on bald headed kids who are knocking on death's door. Therefore, without the media's help, no one knows about it except for the families and friends of the child with cancer. Another thing I have found is that when the general public hears about childhood cancer, they immediately think Leukemia because that is the most talked about childhood cancer. There are many different types of childhood cancers rolled into what is termed Childhood Cancer…can you imagine if we did that with adult cancers and termed it Adult Cancers??? That is another reason, I believe, that funding is not at an acceptable level. Like Neuroblastoma, no one knows what that it is, but colon cancer and breast cancer, everyone knows what those are. Money raised for those cancers, goes directly towards those cancers. With Childhood Cancer, if money is raised it goes to all types of childhood cancers, and not one specific type like Neuroblastoma. Childhood Cancer cannot compete with breast cancer or colon cancer because of the amount of people who get those diseases. Childhood Cancers are supposed to be "rare" but 46 children get diagnosed each school day in this country with a Childhood Cancer. I do not call that "rare" at all, especially being one of the 46 on April 25, 2007. The only way money gets raised directly for these cancers is by the parents of the children that are affected by that cancer. Government does not give adequate funding for the children with cancer in this country. It goes to the more known adult types of cancer like breast and colon. By raising awareness, we hope to change that for our children
Q. How is Roman doing today? What type of little boy is he? Also tell us something about your daughter and his sister.
A. Roman is what the doctors have termed "no evidence of disease." What this means is that Roman will always have cancer but the tests and scans show that there is no evidence of it that can be seen at this time. It's a very scary way to live but we gladly accept it because we know things can change for us in a second. Roman is doing amazingly well. Looking at him, you would have no idea what he has been through. Roman is walking strength. He is such a happy, loving little boy. He is very smart and great with his little hands. He loves to build things with blocks and Lincoln Logs. Everyone who sees him and meets him calls him a "miracle." Roman is the epitome of strength and bravery and courage. When we named him Roman, we had no idea that this strong name would be so fitting for him.
Sheridan is Roman's older sister. She is 5 now. When Roman was going through his treatments and his transplant, it was extremely hard on Sheridan being away from her baby brother and both Mike and I. We made certain that when one of us was with Roman, the other was with Sheridan. She is a fun, energetic and smart little girl, so full of life and energy. I always call her our "fireball." She gave Roman "therapy" that he could get nowhere else. The love they share with each other is a gift from God. Sheridan is what kept us going when we thought we couldn't go on anymore.
Q. How can the average person advocate the government on behalf of more funding for Neuroblastoma, which is a common childhood cancer, and other cancers that primarily effect children?
A. The average person can advocate for more funding for Neuroblastoma and all Childhood Cancers by helping to raise awareness. That is why our RALLY 'ROUND THE GOLD RIBBON campaign is so extremely important in letting everyone know the GOLD RIBBON is the symbol for Childhood Cancer. The general public does not know that Childhood Cancer even has a GOLD RIBBON as its symbol. Adequate awareness for all Childhood Cancers needs to be the priority, then the funding will soon follow. A few ways that people can help are listed below:
Q. I consider you a mother warrior. A mother who is doing what she has to do to protect her child and care for her entire family. Did you always know you had this type of strength and the ability to inspire so many people?
A. I always knew that if I were to become a mother, I would be just like my own mother, God rest her soul. I appreciate being termed a "mother warrior." I think being faced with what I have had to face, any mother would do the same thing as far as protecting their child at any cost. But, when it comes to being a mother who inspires others and that unexplainable strength to want to make a difference for Roman and all children with Childhood Cancer, I really think I have always had it in me. It was just waiting for the right moment to be unleashed.
Q. I have noticed that you always pray for other families and visit other mothers in the hospital to offer support. Why do you do this and what does it do for you?
A. I am a loving caring person in general. I will hug anyone and everyone. I really feel that sense of purpose when I visit another family or meet another family who are on the same cancer journey as we are. I immediately want to do everything I can and am able to do to help them. I feel like God chose me for this role and I might as well do whatever I can while I am in it.
Q. What advice can you give to families who have a child who is newly diagnosed with cancer?
A. The advice I would give a new family who has just been handed the worst news of their lives is this: Take it one second at a time. Take it one day at a time, because in the cancer world, nothing ever stays the same. Be flexible. At that point, all sense of time disappears and from then on you are on your child's clock and calendar. NEVER turn down help of any kind. You will need it even when you think you don't. And, NEVER stop believing in the power of prayer or miracles. Keep faith alive and well in your household.
Q. How can our readers support Rescue Roman? What is it that you need most?
A. Your readers can support Roman and all kids fighting for their lives, by wearing a gold ribbon to raise awareness. If your readers need a ribbon, please visit us at www.RALLYROUNDTHEGOLDRIBBON.org and we will get ribbons to them. What we need the most is monetary donations to help us keep making ribbons so that we can continue to pass them out for free to spread awareness. Not everyone can afford to buy a ribbon or ribbons. This way, everyone will get as many ribbons as they want and the awareness begins. With awareness comes attention. With attention comes help from corporations and businesses. Then, media attention is bound to follow.
Q. I am going to change gears here and ask you a few different types of questions. Who is your role model?
A. My role model is not just one person, it is all of the little cancer warriors who fight every day for their lives, like my son Roman. They are in every sense role models and most adults can stand to learn more than a few things from them. I am honored to call my son Roman, my role model.
Q. What is your favorite quote?
A. My favorite quote is from the movie "Mr. Mom" where Michael Keaton's character says "220, 221, whatever it takes". That is the quote we live by in our household, especially when it comes to Roman and Sheridan.
Q. What is your motto?
A. My motto is live for each day, live for each moment, for it can be taken away from you without any warning.
Q. What is your favorite book?
A. My favorite book is "Don't Sweat the Small Stuff." That became ever so clear and apparent after Roman was diagnosed.
Q. What do you do to relax or take some time for yourself?
A. I love music. I love to just sing while doing dishes, or while riding in the car. And the kids like to hear me sing. I get the most comfort listening to music and really listening to the words of a song.
Q. Do you have a lasting thought we did not ask?
A. My last thought would be this: Any cancer is bad in any family. Any loss is bad in any family. But a child losing their very young life to cancer is not natural. Natural is a 78 year old person who dies from cancer. Not natural is the 2 year old who has not even lost their first tooth yet, or been potty trained yet, or the 5 year old who has not even gone to kindergarten yet. No, those are NOT natural by any means. We can send men to the moon, we can save an economy from collapsing or a car industry; we can even send money to other countries to help them with their illnesses and tragedies. We can do stories on animals and the treatment of animals, but we can't even save our own children from dying from cancer. I hope in my lifetime, we find a cure for all cancers for they are all bad. I just so happen to think that Childhood Cancer is far worse than you can ever imagine.
For more information on Jody and Roman Fariello, please visit www.rescueroman.org.
To advocate on behalf of Neuroblastoma and all Childhood Cancers or to make a donation, please visit www.RALLYROUNDTHEGOLDRIBBON.org.
To sign a petition advocating for more funding for Childhood Cancer research, please visit People Against Childhood Cancer (PAC2) at http://curechildhoodcancer.ning.com.
To donate to Childhood Cancer Research, please visit Cure Search at www.curesearch.org.
To help make a wish come true for a child suffering from Childhood Cancer, please visit Make-A-Wish-Foundation at www.wish.org.
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