#StepUp and Express Yourself - like Ava!

Ava_Art_StepUpToday, we #StepUp with Ava's mom Gina, who brings us the story of her brave daughter's battle with lymphoma. Kids like Ava are little artists, musicians, and authors with so much to learn and share with the world. But their ability to create, explore, grow, and thrive is threatened by insufficient federal funds for childhood cancer research. Please read and share Ava's story with the message: Kids with cancer have only just begun writing their own stories. Please #StepUp and support more funding for childhood cancer research. Encourage everyone you know to learn more about the need for greater federal funding.

Ava_SmileGina:  "In mid-February 2013 I noticed a bump on my daughter Ava’s head. She was 8 at the time. I thought she must have just bumped it playing around with her brother but it never went away. Ava's doctor and dermatologist both told me it was fine - a benign cyst. The doctor suggested leaving it alone but my husband and I decided we wanted it removed.

Getting the 'cyst' removed was supposed to be a simple procedure. While I watched the doctor remove the mass from her head, I could see her struggling. Things didn’t seem right! I saw her pull something out of Ava’s head. The doctor had a confused look, and I felt like something was wrong.

She pulled out another piece from Ava’s head. At that point, the doctor asked me to leave the room.

The entire procedure took three hours. The doctor called me back into the room and said it wasn’t a cyst as she had originally thought. She sent the mass in for testing. We called several times a day, every day.

Words No Parent Should Hear

When Ava had her stitches removed, we got her results. Ava and I waited in the waiting room while the doctor talked with Ava's father Todd. We had a bad feeling and we didn’t want Ava in the room to hear the results. I’ll never forget the look on my husband’s face as he walked towards us.

He tried to act normal as we drove home. Once we got home we got Ava occupied with something so Todd could share the results with me—Ava had lymphoma.

The Isolating World of Childhood Cancer

I honestly felt like the results were a mistake:  Ava was healthy and strong. We started looking around for the best hospital to care for Ava. Todd and I agreed Children’s Hospital Los Angeles was the best for her. I called and we met with Ilanit Brook, MD, in Children’s Center for Cancer and Blood Diseases the next day... one day before her ninth birthday.

Ava had surgery on Wednesday, March 27, 2013 and just over a week later she was admitted for her first full treatment of chemotherapy. None of us understood what a cancer patient had to go through to get well again.

Ava spent most of 2013 either inpatient or at the clinic. We watched our daughter loose her hair twice. She was in a wheelchair for such a long time. She had countless surgeries, and she has to be home schooled.

As of this summer, Ava is still fighting cancer. She was just hospitalized with a fever at the end of July. Almost every time she's been in the hospital she has to be on isolation. No one can come in her room without gowning up. Ava loves her friends, but cancer is very isolating. Cancer has taken part of my daughter's childhood away. She will never get these years back!

Ava_Smile2_croppedA Call for Change: Kids Deserve More Funding

Ava still has a year left in her treatment, and it is heart breaking watching your child go through such a horrible disease! Since Ava's diagnosis I've done a lot of research. It's really sad to me what I've learned:

Childhood cancer only receives 4% of federal cancer research funds? That's just wrong!

There have only been two new drugs developed in the last 20 years to treat childhood cancer, because it's not profitable enough? There needs to be a change.

I watch my daughter and other kids with cancer and I just can't accept that some of them might not make it. It's not fair, and it's not right. Kids deserve more funding."

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We agree, Gina! Here are a few ways to support today's #StepUp message in honor of Ava and all children battling cancer:

  • Spread Ava's story by sharing this blog post;
  • Educate your family and friends on the need for more funding by sending them here;
  • Share your child’s favorite book or song with the author/artist via social media. In honor of your child, ask them to #StepUp in support of more childhood cancer research funding.
  • Tweet at your favorite musicians with the message: Help kids with cancer keep singing and dancing! Please #StepUp and support more funding for childhood cancer research: http://stepupforchildhoodcancer.com/