My heart breaks every day when I think of this moment.
The moment before they finally closed Hayes's casket.
I couldn't stop kissing her sweet face and saying "excuse my sweet baby" over and over again.
It wasn't just a nightmare, it was real life.
A wife who loses a husband is called a widow. A husband who loses a wife is called a widower.
A child who loses his parents is called an orphan. It is not a word for a parent who loses a child.
It's something that people don't mention because they don't talk about. It's too scary. This is our reality.
I was asked often, but what was more difficult in Hayes' struggle?
One of the most difficult was to feel completely alone in a world of over 7 billion people.
That nobody really knew what Steve and I were feeling.
The feeling of life continues to move when ours moved in slow motion; in a hospital room. In the painful slowness of childhood cancer treatment.
I remember when my child Hayes started cancer treatment.
I remember thinking, "Wow, my daughter has cancer!" It must be one of the first MAI. "
But as we entered the cancer unit at Primary Children 's Hospital, I saw all these beautiful, small bald heads and remember thinking, there had to be an influx of childhood cancer in Utah.
As I expressed to my husband, he told me with the knowledge that cancer was probably not new.
Cancer was probably something that has been around forever and we didn't know it.
We didn't know why we had to drive the carpool, we had to do the shopping, we had to prepare our children's school lunches and we had to help them with their homework.
The banana tree had camouflaged the frightening truth that childhood cancer was destroying the lives of thousands of people around us.
Losing a child is beyond anything you can understand.
I remember when I was a mom for the first time, my stomach was stiff with nausea at the thought of losing a child.
It is so beyond any pain a parent can ever imagine.
Losing a child is like having half of you literally die. Half of you die slowly in the pain of childhood cancer.
The pain of not wanting to admit the nightmare of the possibility of losing a child.
But here's the thing, even up to the last minute of my child's life, I was contacting doctors around the world to get answers.
I knew I was missing something. I had to be because in my mind, Hayes was about to destroy everything I was afraid of.
He was about to beat Hayes. He had to because I had faith.
While watching my baby breathe his last breath, he breathed in a force that I never imagined was possible.
He knew he was changing the world and I was just the lighthouse to carry on his legacy.
Do you know what else was incredibly painful about his fight against cancer?
Watching my battle for a child, I literally cry through the pain of cancer treatment.
Observing it absorbs fever above 103 degrees and groaning with pain because it cannot swallow the pain of aphtha to chemo.
As a parent, it's a heartbreaking accomplishment that doesn't have a minimum of words in my son's life.
Cancer and chemo were in charge and I was just a spectator in the fight. It hurts too much to realize it.
He couldn't even be home. He was so weak from the chemo that he was stuck in the hospital for over 30 days at a time.
He and I left our family completely separate. I was alone and my husband was alone. It was so difficult.
But it was worth it, because I would have given anything to fix it.
If I hadn't tried everything to fix Hayes, I would have regretted it. No question.
Because my worst nightmare would have wondered if I had done everything possible to fix it. And apparently, I did everything possible.
Losing a child puts you in a completely different group, because suddenly you are no longer part of the group of child patients.
Now you are part of families that have lost a child due to accidents, overdoses, for everything without a label.
I am simply a mother who loses children and any mother who has lost a child understands it. It's just so bad.
- After his death, Savanna and Steve founded the HayesTough Foundation. The organization works to provide financial help and emotional support to families affected by childhood cancer.