National Cancer Survivor’s Day is a day of celebratory status for many children and their families across the world. This day should be celebrated to the extreme! Parties all over should be held. Families should hug and rejoice in their status as a survivor. I will also celebrate for all the children that survive and continue to beat the odds. Congratulations and may you continue to have good news!
Forgive me, but on this wonderful day of celebration, in order to have many more children survive, and to improve their long term outcomes, I must continue to express my personal perspective as a mother who lost her son to cancer or rather the inability to cure his cancer.
Ryan was 5. He was my only son. He was the baby of our family. Ryan’s smile and personality could light up the Earth. He was my world. He had Acute Myeloid Leukemia (AML). It’s a cancer that many don’t survive. It seems to have the ability to hide from chemotherapy and in his case he was cured and then relapsed five short weeks later. After six months of intensive chemotherapy and long hospital stays, it actually transformed. The protocol used to treat a relapse of AML did not help. His doctors found a trial protocol and ran with it. It put Ryan into remission, but while doing that, it also killed his immune system. He was without any kind of immune system for 3 months. During that time he had contracted meningitis, which caused and array of problems. Eventually a lung fungal infection took his life. He died two days before his 6th birthday. Five days before his bone marrow transplant that was meant to save his life. The truth is he was cancer free. But the treatment that made him cancer free was what ended up taking his precious, beautiful life.
It’s been almost 10 months since we have heard his laugh, seen his smile, held him in our arms. Each day without him is like a dream. I wake up and think to myself, “This was a dream. He’s still here.” But then I wake up a bit more and realize this is my reality. I have to remind myself of this each day that the sun shines on this Earth. It’s a very hard thing. If you have lost a child, you understand. If you have not, I pray you never have to endure the lonely nights, the dreams, and the reality of the sun’s wake up call shining on you when it no longer shines on your child.
Sunday, June 2nd, will be National Cancer Survivor Day. I will wake up after my dreams stop, my reality sets in, and when the sun shines in my windows and realize I cannot celebrate this day like others who have children that survived. It will be very painful. It’s another day to celebrate that has been taken from me. No more birthdays, no more Christmas’, no more Easters, or Forth of Julys, it’s another day Ryan can’t celebrate. It’s a reminder for me that childhood cancer awareness must be first and foremost in everyone’s thought. It’s a reminder to me that Ryan may still be here to celebrate his survival like others if there had been enough money in funding research.
I will see people post on Facebook about how their child survived. I will see people make comments to those parents about how strong their child was, that they fought the battle and won. Let me tell you, my child did not lose. From my perspective, it’s not about how hard the child fought. Ryan fought so very hard. In the end, his type of cancer and the lack of an effective treatment was what took him from us, not the strength of his battle. A five year-old boy does not one day say “I’m not going to fight for my life.” During doctor’s rounds, in the middle of a PICU hallway filled with strangers, what happens is a doctor tells you that they are sorry, but he’s dying. There is nothing more they can do. It is not because the child didn’t fight. It isn’t because he wasn’t strong. It is not because of anything except for the fact that there was not enough research funding for an effective cure.
Instead of celebrating this day with Ryan, I mourn this day because it’s a reminder for our family that he is not here. I congratulate each and every parent that still has their child with them. Like others who have lost their children to cancer, I will continue to reach out to other families like ours and try to make a difference in Ryan’s name. I feel it’s selfish in a sense because I do what I do in his memory.
I dream of being on the other side of the fence, where my child is still alive and here with me. I dream that we are the one’s celebrating National Cancer Survivor Day and he wakes up and says, “I wanna snuggle momma.” Sometimes the grass is truly greener on the other side, like National Cancer Survivor Day.
Let’s make some noise and create awareness on a national level to find effective cures for childhood cancer. Write your Congressmen and Senators and ask that more funding be devoted to children’s cancer!
Author: Mikelle Gailler Raffel
Survivor: What is survival really like for children? You will be surprised at the answer!