Yesterday was my daughter’s half birthday, she would have been three and a half. The thing is I will never have a picture of her at three and a half or four or five or six or seven, and on and on and on 💔 This is real. This is the reality for so many families. This was not something we ever imagined happening to us. It wasn’t in our genetic history. She wasn’t more predisposed to get cancer then other children are. It just happened.
Even though Neuroblastoma is considered to be a “rare” cancer, it is the most common solid tumor cancer in children.
Believe me when I say, it feels far from “rare”.
On average, 43 children are diagnosed with cancer everyday and it is the most common cause of DEATH by disease in children.
If you were to google right now the survival rate for Neuroblastoma you could probably find a pretty high number.
What you don’t know is that number is probably for the stage 1 or 2 low or intermediate risk kids. The survival rate for kids like Emery is only 30-50 percent.
The more rare a cancer gets the lower the survival rate goes, some as low as ZERO percent... 😧
AND...that’s only if the treatments don’t kill them first.
I have followed so many other pages of kids fighting cancer that have passed away because their bodies weren’t able to handle the side effects of the treatments...Infections that causes sepsis, respiratory and organ failure, viruses and colds that most kids with adequate immune systems would handle just fine but not a cancer kid that has no immune system from the chemo that was given to them.
Parents take their children into the hospital thinking they are doing what’s right, thinking they are doing what they have to do to save them but end up leaving the hospital without them. BUT what else are we supposed to do? If we do nothing then it is certain they will die.
Why don’t kids get the best of the best?
If you had asked me before Em’s diagnosis I would have naively guessed that cancer treatments for kids would be the safest and the research would be top notch...I quickly figured out that was not the case.
Do you know how many protocols are set up to catch cancer early in children?? Zero! It hurts when I let myself think about what Emery’s life could have been like if we had caught it sooner. What her story would have looked like.
Did you know that the average years of life lost when a child DIES of cancer is 71 years. Em lost all of those years.
The average years of life loss with adults is 15. Don’t get me wrong cancer sucks whether you are young or old but why wouldn’t a child who has their entire life in front of them get the best chance of actually living that life?
The most common age group of kids diagnosed is under the age of 5, the population least able to tell us that something is wrong.
The average age of diagnosis for a CHILD with Neuroblastoma is 2, exactly how old Em was. Average age of an Adult diagnosed with cancer is 67. Again don’t get me wrong any age sucks but what I would have given to see Em live to be 67. What I would have given to have been able to take her place. She had hardly lived her life. She had never experience so many things. Too many things to even try to list. And even with the 3 short years she was given 1/3 of them was spent in a hospital.
By the time kids are diagnosed with Neuroblastoma it has already metastasized in 80 PERCENT of patients.
Relapse happens in at least 50% of kids with Neuroblastoma and there is no cure or current protocol in place for recurring or relapsed Neuroblastoma.
The government funding for childhood cancer is PATHETIC.
You can go google and see just how bad it is. Just how little kids get compared to adult cancers. Yes, there are more adults that get cancer then kids. But does that mean that kids should suffer just cause there’s less of them. Just because they are too little to use their voices. Too little to speak at rally’s and don’t use any sort of social media yet.
It falls on the parents to make the difference. Parents who are hardly keeping it together as it is as they watch their kid being tortured every day. Parents who can barely make it through the day to then go and be their child’s voice. Parents who are brave enough to show others exactly what their child goes through on a daily basis even though they shouldn’t have to. Parents who have lost a child and are now fighting for their own lives everyday to say enough is enough. 💔
The sad part is that it’s the parents and the non profit organizations that make up most of the funding for research. We have to. We don’t have a choice.
The pharmaceutical companies just look at the numbers and since they don’t feel the pay out for actually researching new and better drugs for kids would be high enough they just don’t do it. It’s all about the money, they don’t care about our kids.
The pharmaceutical companies only give 1% of their research and development budget to Childhood cancer treatments. The NCI (National Cancer Institute) budgets at best about 5% to childhood cancers. That’s not 5% for Neuroblastoma. That’s for every type of childhood cancers.
Do you know how many different kinds of childhood cancers there are? Just off the top of my head, no googling, I know of Neuroblastoma, ALL and AML(Leukemia’s) rhabdomyosarcomas, retinoblastoma, (I’m already at five different cancers all getting the same five percent funding so we’re already down to 1% per cancer but that’s not even close to all of them) Dipg, osteosarcomas, Wilms tumor, Ewing’s sarcoma, medulloblastoma, etc ...It is not fair and it certainly isn’t right. Without the funding for research kids are just going to continue to die.
Does any of this make you mad? Does any of it make you want to cause a change?
People get so outraged over other things going on in life at the moment. They want to make big changes so that kids will be safe and be able to live their lives without being in fear...and even though yes I also want kids to be safe there are more kids that die every day, every month and every year from childhood cancer but for some reason it’s not talked about. There is nothing a parent can do to keep their child safe from being diagnosed with cancer but we certainly can do better when it comes to their outdated, harsh treatments.
The funding, research, treatments and awareness have to be better.
I will be Emery’s voice for the rest of my life. She should still be here. She should never have known that cancer even existed yet alone go through all that she went through and still not have lived to celebrate her 4th birthday. She deserved better. I do believe it will get better.
I do think more people are finding out the truth when it comes to the governments lack of funding for childhood cancer and the horrible out dated treatments that are way too harsh for kids. I really do believe it will get better, it has to get better but it’s too late for my Emery. She’s gone. Her fight it over but like I always say ours is just beginning.
Let’s not let it be too late for your kids or your friend's kids or the next 43 kids that will diagnosed today.
I don’t like talking statistics, comparing one way a child dies to another because any young life lost is tragic. But all everyone seems to see is the numbers. Well the numbers are there.
Just from my experience of walking the halls at Children’s Mercy with my daughter...the oncology floor was almost always full...FULL. Quite a few times when we were unexpectedly admitted from the ER we would have to wait all night in the ER for a room on the oncology floor to open up.
I think the problem...well at least I hope the problem is that no one knows.
It’s not displayed all over the internet, tv, magazines and newspaper. It’s not in our faces every day like other issues are. Posts like these don’t go viral. And when you do see a story most of the time what you see are the cutest little bald kids that are full of smiles and bravery and courage...and don’t get me wrong they are all of these things and more but that’s not reality.
Childhood cancer is cruel, painful and aggressive and it steals away their childhood.
Even though I’ve never seen anything as inspiring and courageous as a child fighting cancer they shouldn’t have to be so brave. They shouldn’t have to look their parents in the eyes and tell them that they will be ok without them. We are not ok, I am not ok. 💔
Imagine if a gunman went into a school today and shot 43 kids and 7 of them died...now imagine if that happened EVERYDAY. What would people do? What would people say?
Or...
Imagine if some virus or disease was to come along and start killing an average of 7 kids every day, what do you think people would do? Panic? I would! It would be all any one talked about. Well guess what there is a disease killing that number of kids everyday...it’s called cancer.
What can you do to help? Here are just a few ideas.
Follow and support other cancer families pages. Help them as they go along this very difficult journey.
Follow and donate to well known non profits that are trying their best to make a difference for kids. Real funding for research and better treatments.
Here are 3 non profits that I know are making a difference in childhood cancer research. https://www.alexslemonade.org/ https://beatnb.org/ https://www.stbaldricks.org/
Talk about it! Tell your family and your friends and post it on your social media accounts. When you see a local fundraiser for pediatric cancer-go do it! Share it.
Spread awareness.
We have big dreams when it comes to what we would like to accomplish ourselves with funding for research and helping other families in honor of Emery and will definitely keep you all updated! 🎗🦎❤️
We have applied to become a 501c3 foundation and are still scheduling more fundraisers. We have 6 families that we are supporting all that have a child with Neuroblastoma. It’s just a small way of keeping our Emery’s memory alive. 💜🦎🌙
Follow us now on Instagram at teamemeryforever and Facebook at Team Emery Forever- Bringing the Thunder to Childhood Cancer