Many people probably believe I am passionate about childhood cancer because I lost a child to the awful disease. That is only partially true. There is so much more to my story and many reasons why I can’t function daily unless I keep the fight going. Awareness is just 1/2 the battle. Trust me, before my daughter got sick I knew almost nothing about childhood cancer. Honestly I didn’t want to know. It’s not exactly a pleasant topic. As most people probably do I turned a blind eye to the cute, sick, bald children I saw on TV commercials. I might have read a few facebook posts about a sick child then I would think “How sad and horrible”. I’d maybe say a prayer and move on with my day. I mean, isn’t St Jude curing all of them!?!? Send them your $20 a month and all will be ok. Right!??
The truth is, as wonderful as St Jude may be the commercials are very deceiving. They pull at your heartstrings but we are very far from a 80% cure rate. I believe people need to know the real truth and honest facts in order to want to join in this fight against childhood cancer. Unless you know the truth you can’t understand the urgency and need to make changes. Looking past the horrific treatments these children endure such as the prods and pokes, the burns, the screams, the sickening chemo, countless medications, nausea, indescribable pain, transfusions, sleepless nights, months and sometimes years...there is so much more to understand. I can try and explain what the nightmare is like but there are literally no words to describe how horrific it actually is. It is unimaginable and I describe it as a war with bloody casualties and horrendous scenes you can never unsee and only wish you could. Watching your child tortured day after day is your only hope for saving them and there is nothing you can do to make it stop. It destroys families and lives. It changes you~ forever. The truth is this...doctors, specialists, nurses have the best intentions to cure your child but the advancements are so few and the knowledge is so little that they are really just giving treatments their best guess. Some kids have cancers that are considered rare with a slight chance of survival and they survive. Some have more common cancers with high cure rates and don’t survive. It’s a game of roulette. Some types of childhood cancers do have more treatment options and higher cure rates because they have gotten most of the attention and funding while some have zero cure rates and little to no advancements. The treatments for all
of them are barbaric and many treatments haven’t changed at all over the last 40 yrs. There have only been a few drugs approved specifically for children while adults have 100’s of drug options...think about that...how can this be? It is for many reasons. I believe the main reason is because kids don’t have a voice. Many parents that go through this cancer experience can barely survive it themselves much less talk about it during or after the fact. If their child does survive many want out of the cancer world for good, understandably. They desire a life of normalcy and without the burden of cancer. If they lose their child the grief is too painful to constantly relive.
Drug companies deal with a lot of politics and red tape. They don’t want to experiment on children for ethical reasons. In order to try out new drugs on children the child has to be in fairly good health. Many of these children are in frail health and have aggressive or advanced cancers and don’t quality for drug testing. This is even though parents may beg for any new treatment options when the typical treatment options are exacerbated. We did, we begged and searched to no avail. Most childhood cancers are diagnosed after they are already in advanced stages. Many symptoms are subtle or acute or written off as typical childhood aches and pains. Many adults are diagnosed at earlier stages and have symptoms they can express to doctors and are able to request more testing.
The National Cancer Institute (NCI) is the government agency that funds most cancer studies. Of all the $ they allocate less than 4% is granted to children’s cancer research. Children are not a national priority and only the most common cancers get most of that 4% pot. The more “rare” types have little funding and therefore have made few advancements. Some types of cancer like DPIG have a zero percent cure rate...zero. The 5 year survival rate = a cure in the cancer world. Many of these children that survive for 5 yrs. after diagnosis are not necessarily cured. Many relapse months/years later and many are still enduring treatments at the end of 5 yrs. Some are lucky to survive but of those who survive 2/3 will have severe and lingering health problems because of their cancer treatments. Adult cancers and children’s cancers are totally different entities. What treats an adult may not benefit a child with the same cancer. A child’s DNA and bodily make up is different from an adults. Researchers and doctors are now realizing this and beginning to treat them differently. There are 12 main types of childhood cancers and literally 100’s of subtypes. We need alternatives to chemo and more targeted therapies. We are finally seeing some new less aggressive treatments being developed but it’s slow moving. It’s all about the money and money is needed to fund cures. If the government isn’t helping then it is up to private organizations to raise the needed funds and support the studies with the most promising research. That is what we do with our “United for a Cure Fund”. I fight with Mary everyday by first spreading awareness then finding ways to raise $. I plead, I beg, I expose my heart. It’s worth it to me. I couldn’t save Mary but maybe I can help save another child in the future.
When I first realized all of these true facts it blew my mind. In an advanced society where we can put a man on the moon and develop an atomic bomb why haven’t we found cures for childhood cancer? Or maybe a better question is why hasn’t anyone cared before? Now with social media and other news outlets we can share our story, our reality and work to help change things one person at a time. In fact childhood cancer has never been a priority. Ever. One child suffering is one too many and hundreds of thousands have suffered for way too long. My daughter once said to me, “If I have to die so others can live then I’m ok with that.” As much as I didn’t want to hear her say this at the time I believe she was much smarter than me. She has always been smarter than me and she knew something I didn’t. If she survived then the people who followed her story would never grasp the urgency for change. We shared Mary’s life through cancer because she wanted to. She wanted to change things and help others, her life was a secondary concern to her. I can promise you one thing, cancer is not rare. It will effect your family at some point in time if things don’t rapidly change. The childhood cancer rate is increasing, not decreasing. 1/285 children will be diagnosed with cancer by the time they are 20 yrs old. That’s 700 kids a day! Cancer is the LEADING cause of death by disease in children under the age of 19. The life span of a child effected by cancer is shortened by an average of 30 yrs.
If it hasn’t touched you already it will one day be impossible to turn your head if things don’t change. I just pray it isn’t your child, immediate family or best friend who is effected. But it very well might be.
Every penny we raise we give to research we feel is making fast and important advancements in the childhood cancer world. We want a cure. A good cure. One with less harsh treatments, fewer side effects and more lives saved. You can help by giving whatever you can and also by sharing our story. Thank you to all of those who don’t and didn’t turn their heads, who continue to lift up our family and constantly support us. There are thankfully many of you. ❤️🎗XO
www.curechildhoodcancer.org/United
