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
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Lost my son to AML as well after a bone marrow transplant from his sister. She was a perfect match. He stayed in remission for about 4 months before he relapsed and died. Prayers being sent your way.
Mikelle, I’m so very sorry to hear of your tremendous loss of your little boy, and I couldn’t agree with you more. I am also a childless Mother in the physical sense. My son also didn’t lose his battle to cancer, it was the lack of a diagnosis that ripped his precious life from this earth. Jadyn was my first and only child too. Each and everyday he lived of his short 2 yrs here on earth he always had a smile on his face and a friendly `hello` to share with anyone who passed by. He made my life whole and filled with the true love no-one but a child can give. The life i live now is just a day by day going through the motions knowing I’m one day closer to being with my beautiful lil man again. Thank you for writing this story so well because you’ve said it much better tahn I could’ve. You’re the voice of many of us parents who feel the same, but can’t put the emotions into words as well as you have. THANK YOU!
Thank you for sharing your story. I’m very sorry to say our babies had nearly identical stories. Our 12 year old daughter Cecelia died from chemo caused heart failure just days after she was supposed to get her sisters bone marrow. She also had AML and achieved remission but relapsed less than 3 months after completing treatment. She was also back in remission when she died a little over 9 months ago. She was very strong and fought very hard. I wish she could have won the war against AML.
I understand and agree with everything you said. We lost our 2 year old granddaughter, Ayanna, just a couple of weeks after her 2nd birthday. She had T-cell Lymphoma. Her cancer was gone, after suffering through the treatments for 6 months, but her immune systems was too weak to fight off a “simple” influenza virus.
Research is the key to finding ways to prevent and to cure cancer. I feel cheated when I hear about other children that have successfully completed treatment and are now happy and healthy but, am happy for them and their families at the same time.
Funding is being cut for cancer research all of the time because the senate and congress don’t have their priorities straight. We all need to be the voice for these children who can’t speak for themselves and let them know how we feel and that our votes will be reflected in the strides we see being made by them. It’s the least I can do for Ayanna. ♥
Hello Mikelle,
I am sorry for the loss of your little Ryan. I really appreciate how you wrote about being a fighter. My family lost two children both to brain cancer. My beautiful daughter Breanna was dx at age 4 with medulloblasta. She passed after 16 gruelingonths of treatment. After her second mini stem cell transplant something got into her lungs; unknown origin still today. Her cancer was gone according to her autopsy and her cause of death was lung failure. Just four years later my oldest son Jalen was diagnosed with glioblastoma multiforme. He went through treatment for 21 months and passed at home on hospice. His tumor just took over and there was nothing we could do about it but hold his hand, talk to him, lay next to him, pray, and cry. We are starting a foundation called Have Faith Be Strong in both Jalen and Breannas memory. We know childhood cancer is not rare! We work on awareness each and every morning doing posts of stories about all things related to childhood cancer. God bless you. We share the same pain forever.
Mikelle, I am so sorry your precious little Ryan is not here in your arms. You are right, it has nothing to do with the child’s strength, but everything to do with lack of funding, and also, lack of awareness. I wish there was something I could say to help you heal, but I know all too welll that there are no words that can magically make it all better. Just know that I will help you make noise to make a difference for the children of tomorrow, in memory of your sweett boy, and all the other little ones who faught just as valiantly only to be failed by ineffective treatments, and too harsh side effects. Sending you much strength, love and light.
I too lost my son when he was 12-1/2 to Acute Lymphoblastic Leukemia. He was diagnosed on May 1, 1990 and passed away on May 10, 1990. Not a day goes by that I still miss him. I wonder what kind of a man he would of grown up to be. The one thing he taught me was how to fight the fight. I am in remission from breast cancer and I got here through his strength.
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Reblogged this on HOPE ALWAYS and commented:
Another great post from 4sqclobberscancer…
I lost my daughter Bridget to osteosarcoma almost 8 years ago. She fought as hard as she could for 18 months as the cancer moved to every part off her body. If bravery, the will to live and being a warrior were what she needed to “win” her battle, then over the last month she would have gone to senior prom, graduated from HS and would be preparing for the next part of her LIFE, college. But though she was a brave warrior who wanted nothing more than to live, she was not one of the lucky ones. Yep, lucky. Lucky it was caught early, lucky the protocol worked, lucky it didn’t spread or that there were no unexpected side effects. Lucky. Good for you lucky ones! Really, I mean that. I wish my Bridget was one of the lucky ones, in addition to be warrior with the greatest desire to live. But she was not one of the lucky ones and she left this world after suffering beyond words. I miss her every day.
Thank you for sharing Mary. We also wish Bridget were here so we could run a survivor story on her. I bet she would have inspired many people to get involved by telling her story. It looks like she handed that job over to you and you are doing a wonderful job of spreading awareness. Thanks so much.