I know because Hubby and I have heard that word twice. Hubby lost his father to the same type of brain tumor that claimed our sweet Joey's life in 2010 when he was just six years old.
September is Childhood Cancer Awareness Month. I didn't know this three years ago. Three years ago I didn't know anyone whose child had had cancer. I had only heard strangers' stories. I felt a passing sadness for them before I moved on with my day, glad that it was not my child.
But then, in April of 2009, it was my child, and it was the worst kind of cancer possible. The kind that was incurable no matter what we decided to do. The kind that made the doctor insist we draft a DNR (Do Not Resuscitate) for our five year old child because he was not expected to live through the summer.
I felt a constant sickness in my stomach. The sickness that comes from the "this-can't-be-happening" place.
Only it was happening. And Hubby and I had to make some decisions.
We had to decide whether to fight the impossible fight, or to let our child go. How is that a choice? I couldn't fathom not doing everything we could possibly do for our precious Joey. He underwent six weeks of radiation that, along with the placement of the inoperable tumor, made him shake uncontrollably.
|Joey at the beginning of his journey.|
He began taking steroids to quell the pressure from the fluid around his brain. Fluid that, if it built up, caused him to vomit several times a day. But the steroids also caused extreme weight gain that made it hard for him to move or be comfortable.
|Joey, four days before he died.|
He also took chemotherapy in pill form and intravenously, as well as other treatments that would help stave off infections and raise blood counts.
Some people call this cruel. If we knew he would die anyway, why would we put him through that?Was it all for our own benefit?
Perhaps. But we also had other children to consider. How could we explain to them that we were just going to let their brother die?
And, there was all that talk of miracles. So many people praying for a miracle for Joey. So many stories of other miracles. So many people with stage 4 cancer that were miraculously cured. Why shouldn't we be able to hope for a miracle for Joey?
We battled for fourteen months. For fourteen months that signed DNR sat on my desk, taunting me into guessing when we would have to use it. Fourteen months of wondering if all the things we had read about children with brain cancer - that they go blind and are unable to walk, talk, eat, or function - would happen to Joey.
In the end, very little of that happened. Joey did lose bladder control, and it was very difficult for him to move. He could still see and eat and talk, although even those small tasks were getting difficult for him.
We never had to use that DNR. The doctor who encouraged us to create it told us that he was shocked that Joey had survived a year.
And the year wasn't all horrible. There are moments from that year that I will cherish until my dying day.
Watching Joey dance with Stripy Kitten to the African music at Disney world.
Listening to him sing Jungle Bells for the family on Christmas day.
His deadpan jokes when we least expected them.
His whispers to me in the dark, "Mommy, I am so your boy."
And believe it or not, holding him as he took his last breath. Losing a child is a horrible, awful thing, but not being with them as they leave this earth must be something that haunts a parent eternally. My only comfort in this terrible situation was that I knew how and when my child would die. Some parents don't get that. They don't get to say good-bye.
According to the American Cancer Society, cancer is the second leading cause of death among children under 15, after accidents.
Cancer and freak accidents...every parent's nightmare.
I wonder, as celebrities gear up for their annual Stand Up to Cancer Benefit on t.v. tonight, why we aren't focusing more on pediatric cancer? Or maybe we are, but I am still hiding in a shell and I just don't know it.
It is still hard for me. It's not hard for me to talk about Joey or to share certain parts of his story. It's hard for me to go to pediatric cancer walks and see the children who are battling or read other people's stories of their current or former battles. It's hard for me to get behind a fundraising cause or promote an issue.
It's hard for me because it makes reliving it again too real and too fresh.
And I'm not fully healed. I don't think you ever fully heal after something like this.
But, I know there are things I can do right now.
I can direct you to Mary Tyler Mom's blog. She lost her precious daughter, Donna, to cancer as well. For the second year in a row, she is sharing Donna's story - all of it - on her blog and on Huffington Post Parents. I admire her for reaching a wider audience, for sharing the painful parts again, and for enduring some hateful comments from heartless readers.
I can encourage you to do something about this. I know there are some of you out there who are passionate go-getters, who want to be involved in something that matters. Google it. Google everything you can about pediatric cancer and how you can help.
Wear a gold ribbon on September 13th, which is known as “National Childhood Cancer Awareness Day" to show your support for a family battling cancer with their child or for a family who has lost their child or for a child you know who is battling right now.
And since it is hard for me right now, until I can fundraise and walk and all that, what I can do is talk about Joey and write about him and ask you to share his story. It's easy. Just pass the link to this blog on to someone else who you think could benefit from it or post it to your Facebook wall or tweet about it.
We "cancer moms" don't share our story because we want pity. We don't want to make anyone else feel guilty that their children are healthy. We don't want accolades for being strong and having grace.
We want our children back.
But we can't have that, so we want to make sure that another mama doesn't lose her child to cancer.
From the website Go Gold:
"Improvements have been made in childhood cancer survival rates over the last few decades. For example, the most common form of cancer in children, Acute Lymphoblastic Leukemia (ALL), went from a 10% survival rate in the 1960's to an 85% survival rate today. However, due to a lack of research funding for new treatments, children today are still being treated with drugs that were developed in the 1960's. Most of the progress has come from increasing the combinations and/or dosages of existing toxic drugs, not from the development of new therapies. Sadly, for the majority of these youngsters, the nightmare of childhood cancer doesn't stop after treatments are completed. Toxic drugs damage and alter healthy, growing cells in their developing bodies, and many survivors experience long-lasting side-effects as a result of the treatments for their cancer. Some side-effects include delayed or disrupted cognitive development, stunted growth, infertility, endocrine dysfunction, learning disabilities, damaged speech and/or hearing, physical handicaps due to nerve damage or amputation, prolonged emotional strain, and difficulty trusting others."
Don't just feel a passing sadness about this and move on with your day. Let's do something about this. Not just this month, but every day.
*Dedicated to all families and children battling this beast, but especially to Nate who recently finished treatment, to Andrew and Zach who are battling, and most of all to Donna, Brinkley, and Joey who are playing with the angels and still inspiring us every day.