Ayven’s Story

I have had the pleasure of watching Ayven grow… seeing the times she was so sick and to now seeing her on her first day of school right next to her twin.  She is growing to be a pretty amazing person.  I have also had the moments of broken with her mom, hearing her fear, feeling her anxiety on scan days… knowing that her mind hopes but knows her cancer could come back.  I have learned that even AFTER childhood cancer there are so many dangers ahead… chemo is not kind, steroids break down bones.  Ayven’s journey is FAR from over…

Share.  Comment.  Engage.  This is childhood cancer…

Ayven’s Story

By her ‘Momcologist’ Kim

Ayven’s story begins the same as many others. Many childhood like ailments that had doctors leaning towards a simple answer. It took us eight whole months of doctor visits until we finally got a diagnosis. Just not the one we had hoped for.

Neuroblastoma – a word foreign to our ears. What was it? What did treatment entail?  How will we get through this?

WILL SHE SURVIVE? 

A question that loomed at the forefront of our thoughts for days…months…years…

It’s a question that I was afraid to ask, and – let’s face it – even the best doctor in the world can’t predict the future.

It’s hard to explain what having a child diagnosed with cancer does to a parent. It’s hard to explain the heaviness and utter devastation that is felt when you hear the words, “Your daughter has a very large mass in her abdomen, which is undoubtedly a form of childhood cancer.”

The world as you know it comes to a halt. Many cancer parents will tell you that they don’t remember many things in the days and weeks following diagnosis. It’s almost like it is too much for the human brain to comprehend.

Ayven’s treatment was long and grueling. She endured several rounds of chemo, one major surgery, and many smaller surgeries. It took a toll on her tiny fragile body, and it took a toll on us.

But somewhere in that pure devastation there is also something miraculous. There is HOPE.  There are people who rally around you, and lift you up, and keep you going…even on the days when you feel like you can’t.

The exact night that Ayven was diagnosed, I was visited by a real life angel. She may not see it this way, but it was the one event that helped me put everything into perspective. A fellow cancer mom, who happened to be down the hall in the PICU with her son (who had been fighting for his life) took time to come and talk to me. She told me that no matter what, we had to have a positive attitude. No matter what, we had to believe.

So that is what we chose to do. Anyone that came around Ayven had to be hopeful…anyone that came to visit had to believe! We made it our mission. She was going to survive because we were going to be her strength!

We are the lucky ones. The ones who made it through the storm and still have our child to hug. We know this – and literally think about it every.single.day. We are the lucky ones whose daughter was diagnosed at such a young age that she doesn’t remember most of her treatment, hospital stays, surgeries, scans…

We are the lucky ones, who received a better diagnosis – stage three, instead of stage four.

Many times, people who are unfamiliar with pediatric cancers think that once a child is “in remission” or NED (no evidence of disease), they are healed and are ready to take on a long, healthy life. That’s where they are wrong.

While we are SO EXTREMELY thankful that our girl is here with us, she still fights every single day. Ayven has many post treatment issues that affect her on a daily basis. But we have her – and we can handle issues. Not everyone has that luxury (if that’s what we call it).

Childhood cancer research is underfunded. Our kids have more toxic treatments and less answers. We need research. We need money allocated to help our kids.

September is Childhood Cancer Awareness Month.  Please help in any way you can.

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