I am not alone in this. So much of what I feel other parents are also feeling. This is what my friend Kristine wrote on the McKenna Claire Foundations FB page yesterday
“We are on a major organizational binge at our house. Our life has been chaos since the day McKenna was diagnosed, which will be 4 years in January. I was cleaning out bags of “stuff” that have been piled in corners of closets or dressers. What I found this morning is what you see pictured above.
This was McKenna’s final Mother’s Day gift to me. It was not lost on me thatit was covered in butterflies and that the gift itself was a blue butterfly keychain. What undid me was what she wrote on the back.
Reading her words, written in her shaky post-tumor writing, brought back every ounce of the hopelessness, guilt, and pain that I have been trying to keep at bay. My daughter trusted me to help her fight this tumor. She believed mommy and daddy would help her beat this tumor. And we didn’t……..
Please don’t tell me there was nothing else we could do. Cognitively I know that, but it still does not erase the fact that I failed the most basic parental directive – protect your child from harm. I am undone once again and I can do nothing but beg forgiveness from my girl.
I know that I am not the only parent who feels this way. I know that my child is not the only one to suffer. My life is filled with children and families who suffer like we do. And I know that there are some who suffer even more.
What I don’t understand us why we, as a whole, aren’t doing more about it. Why do we sit by and allow our children to suffer? Why are we funding billions of dollars for Ebola research when statistically your chances of dying from that disease are minuscule, yet our children (and adults) are dying at record rates from cancer.
I have watched my daughter suffer. I live with that pain and guilt every day. It’s almost 4 years later and not much has changed. I know of far too many children who suffer the same fate.
We are doing our best to help her “fight this tumor” together. It is not in the way any of us had planned. I don’t want my daughter to have a legacy, I just want her here, in my arms, but that is not going to happen.
This is a plea from a mother, not a foundation. If you are contemplating making a year-end contribution for tax purposes, please consider a pediatric cancer research foundation or a direct contribution to your researcher of choice. Our children are counting on us. Believe me, I know.”
It spoke to me on multiple levels and in multiple ways. In part because she speaks the truth nobody wants us to admit. She did fail her daughter as I failed mine. And forever we will know. Forever we will be haunted.. forever we will beg for mercy from this guilt we come by honestly.
I know that’s hard to hear, trust me its hard to stomach.
I did all I could when Jennifer was sick to try to find a way to heal her. I did all I could as she was dying to help her find comfort and I do all I can now to be sure she is remembered.. that her name is continually spoken aloud. But really what parent wouldn’t and hasn’t done the exact same in my shoes? Its that earlier time.. its before my child had an oncologist that I could have made a difference. It was then that I should have been fighting for her.
Do you see it? Do you understand it? This doesn’t have to happen. We do not have to be walking past empty bedrooms that should be filled with our wiggly toothed little girls. But we are. In part because we didn’t know the beast that was looming. Be better than me.
- Number one disease killer of our nations children
- Takes more of their lives than AIDS, cystic fibrosis, asthma, diabetes and congenital abnormalities COMBINED.
- Only thing that makes parents kiss their kids for the last time more often is accidents. Pretty broad category.
- Pediatric cancer research gets less than 4% of our federal governments allocated cancer research budget. (fyi prostate gets 5%)
- American Cancer Society/Relay for Life only gives 1 cent of every donated dollar towards finding treatments and cures for childhood cancer.
I still sometimes look at just those few facts. Undisputed facts and am in shock. How did I not know? How did all of my friends and our family not know. Even people that had close relationships to kids with cancer.. it doesn’t mean this information is known.. and if its not known it cannot be shared.
But it should be. Because its a problem we can do something about. Enough pressure. Enough people talking about it.. standing together saying hey this isn’t right can be the change that needs to happen. I obviously don’t know the answer.. and I don’t think any researcher does either.. right now… But with the right support they can. They will. And less parents will be forced into this nightmarish life that parents like us are experiencing. (If you are wondering… its way worse than you imagine)
The Ebola thing.. well my take on it is this.. I get it. Totally. Its highly contagious and therefore a really scary problem. If we don’t do something early.. well then it will take over and be so much harder to take care of then. I don’t fault our government for sending funds that direction at all..
But I do have to wonder.. That is a lotta money. I think the technical term is a crapload of money ..I’m guessing because of a mix of public pressure and logical ‘get ahead of the problem concern’ the money came .. seemingly out of thin air…
What doesn’t sit right with me now is that notion there just isn’t the money to do put towards these kids. Our kids. Not my Jennifer or Kristine’s McKenna.. its too late for them. But for kids like Wyatt currently in the battle for their lives.. or kids like a Emma or a Noah that are yet to be diagnosed. When needed it has been proven the money can come.. and quickly. Now is the time to attack pediatric cancer.
And also the adult cancers that will benefit from the innovation found with treatments for pediatric cancer. Example? Well.. like .. maybe you have heard of modern chemotherapy? It was pioneered by a pediatric pathologist. And for a current example you can look at Dr Jim Olsen and tumor paint. Something now being used for adult cancer.. created by a pediatric oncology team.
Thats part of the reason for our name.. We start with unraveling pediatric cancer.. the hardest and fasting moving group of cancer.. and the rest will no doubt unravel also.
One thing McKennas mom doesn’t write about, but is something I know we share is that we didn’t just fail our child that had cancer.. its our surviving children as well. My 5 yr old Jonathan, yesterday he just started crying. His heart is broken, he tries to understand it, to articulate it, but he can’t. His is 5. All he knows is he is hurting.
Failing her.. I failed him also. And our 3 yr old and 1 yr old. And so many others. Because my Jennifer.. she was one of a kind. What she could have brought to this world.. we will never know. But it would have been spectacular and beautiful, that much I know.
These are our truths. These are our stories. And we are not alone. But hopefully one day we will be, because there are so many ways to make a difference.
Money is incredible and I hope everybody can find a way to donate to us.. or to McKenna Claire or to any of the incredible organizations fighting to fill in the funding gaps. But its about so much more than just that!!
Its about spreading the knowledge. Now you know.. If you read this entry you can never again say you are surprised. So do something with that knowledge. Share it. Spread it. Talk about it. If there was a predator in your neighborhood you would tell your friends about it. Warn your neighbors. It might not go over well.. but it might. You might be the one to plant the seed in the right persons head that can evoke change. Because it won’t be me. Or Kristine or any other cancer moms. .. It falls to you. Those with cancer free kids in your lives..to make the difference.
YOU can do it.
Its hard though. I get it. But most things in life worth doing are really hard.
*** Right now I got the same sales call I get every night around this time. I answered. And I shared. The facts. My daughters name and our website. It felt a little .. I don’t know..uncomfortable. But also so empowering!! One more knows.***
As we all ring in the new year I will be so sad…incredibly sad..Saying goodbye to the last year I got to hold her. Touch her. And most importantly feel her touch me back. And other parents will just be starting their journey as a bereaved parent. 5-7 will be saying their final goodbye to their babies, because of cancer, before that ball drops.
I know you are sorry. I do.
Don’t just be sorry. Be active. . ..
..until there is a cure..