Chances are, if you stumbled upon this blog, you are here reading about my now 6 year old son Oakley’s journey with Prune Belly Syndrome & Kidney Disease. Both are life threatening and serious diseases with no cure. If you know me, I am a huge advocate for both diseases to bring much needed awareness. Prune Belly Syndrome only effects 1 in 40,000 births each year so it is little known.
My son’s journey with Prune Belly Syndrome, or PBS, has been a rough road. He has had countless procedures, tests, and surgeries. He has spent holidays and birthdays in the hospital. He has missed out on a lot of things a healthy little 6 year old boy should have experienced. Things like no swimming during the summer due to a catheter or a stoma. He cannot engage in contact sports as much as he loves football. No sleepovers due to the medical procedures he needs during the day and overnight to keep him stable.
But, he is alive.
When you give birth to a child that was not expected to survive, you claw and grasp for any opportunity you can to learn and educate yourself as much as possible. You stay up late at night researching and looking for any type of study you can find that may benefit your child to improve their quality of life. You join support groups online and you pound so much information into your head it could explode. With my son’s condition, he doesn’t really fit into any single category. I’ve joined and become part of many different groups and circles of friends to put my own little road-map together for him.
A few years back Oakley started getting little pinpoint dots all over his body. Then his lymph-nodes started to enlarge. I took him to the pediatrician and they ran blood work. Several more times this ‘rash’ presented itself. They ran so many different tests to find the cause. I remember them telling me that this can be a sign of a type of cancer called leukemia. My heart dropped. After more tests and meeting with a hematologist he was diagnosed with a mild platelet disorder.
Some aren’t that lucky.
My first experience with childhood cancer that hit home for me happened a few years ago. I met a woman who had a son a similar age to my son and also had kidney disease. We met in an online support group and really clicked. He was on dialysis for hours each night and was just buying time until he was old and big enough to receive a new kidney. His Mom & I would talk often on the phone and offer support to one another. She just lived a few hours away from me and we ended up meeting in person a short time after. I fell in love with her love for her son. He was adopted and shortly after is when they were notified that he had serious health issues. They were given the chance to back out of the adoption, but they didn’t blink an eye. They took that sweet baby home and loved on him.
I remember talking to her on the phone one evening and hearing her son cry in the background. She said he was being fussy lately. The cry wasn’t a normal cry to me, it was a hurt cry. Something was hurting him. She was determined to get to the bottom of it, they thought maybe his dialysis catheter was suctioning inside of him causing discomfort at first. But, it wasn’t that. He was scheduled for an ultrasound.
One evening I was driving to the store. My cell phone rang and it was her. I answered and she said, “Sarah, they found something and it isn’t good.” She told me he had a large mass on his liver, that it was cancer.
My heart sank, I started crying. Why? How? This sweet baby, his sweet mama. His tumor wasn’t able to be resected due to a previously diagnosed bleeding disorder. Another Mom from our kidney support group scrambled to get me a flight to Chicago to say goodbye, but it was too late.
Michelle called me, “Cole’s died.”
Cole Joseph Vida died on November 26, 2011.
Cole was worth more than 4.
September is childhood cancer awareness month. Talk about it, write about it, donate.
It’s not contagious, but it can come knocking on your door for your child anytime. Day, Night. Summer, Winter. Yes, your child. Your innocent, beautiful child who doesn’t have an evil bone in their body.
I understand it makes some people uncomfortable seeing children in their weakest state. Children in the process of dying in their parents arms. But, if this is what it takes to get people’s attention to save these kids, that’s what has to be done.
I frequent the same circles as families who have a child with cancer. We go to the same clinics and the same hospitals. We go to the same events that our children are featured at.
Our children might have a different diagnosis, but we get one another.
The hurt is the same.
There is one hurt I never hope I have to feel, which is the loss of my child from his disease. I don’t ever want to hear that there is nothing more that can be done. I don’t ever want to have to sign those do not resuscitate papers. I don’t want to be called into a small room while my child was in surgery to be told, “I’m sorry, he didn’t make it. We did all we could.”
No parent should ever have to endure that. But, they do.
25% of children with cancer die
35,000 children are being treated for cancer
13,500 children are diagnosed with cancer each year
This is why I go gold even though my son’s ribbon is green.
It has to stop.
Yes, my son’s life matters. Yes, his disease needs awareness.
But this month, I go Gold. This is for those lost and those still fighting the fight of childhood cancer.
A battle a child should never have to endure and a battle any parent should never have to watch their child fight.