How my daughter's childhood cancer diagnosis changed our lives

In July 2012, my husband and I heard the words "your daughter has a brain tumor," and our lives changed forever. You hear about adults being diagnosed all the time, but we didn't even know that children could have cancer.

At the time, Hannah was only 4 years old and getting ready to start school in the Cayman Islands, where we live. But when the doctors said she had anaplastic medulloblastoma, an aggressive type of brain tumor, we found ourselves embarking on our epic battle to help her stay alive.

Our childhood cancer journey: Starting medulloblastoma treatment
After a surgery in Miami, we moved from the Cayman Islands to Houston so that Hannah could undergo proton therapy at MD Anderson, followed by six months of chemotherapy. Our family was split up, and the treatment was brutal. Hannah was wasting away before our eyes, and we could do nothing but pump more drugs into her to try and stop the cancer.

We kept focused on the end date of May 2013, when we thought we could finally go home and life would return to normal. But in April 2013, we received further devastating news: the cancer had progressed.

Faced with a relapse, and no standard protocol to follow, Hannah embarked on yet another triple drug combination treatment. Her body was already shattered, but still she kept fighting. Her tenacity and spirit continued to amaze us and all who met her. She never complained about being in hospital, the pokes, prods, sedations, nausea, vomiting, diarrhea or mobility issues.

After another year of treatment away from home, the visible tumors had disappeared by May 2014.

Raising awareness for childhood cancer
While we're celebrating Hannah's current health, we had no idea when we started this cancer journey that treating the cancer would come at such a huge price.

Hannah is currently off of treatment, but she has significant brain damage. She can no longer walk or stand by herself, as well as other internal issues. She is slowly gaining strength with daily therapies, but we have a long way to go. She just wants a chance to be a kid.

Being cancer parents has changed us forever. There is no longer "just a headache" or "just a backache." We are constantly on watch. Determined that cancer will not dictate how we live, we have found a new normal. We appreciate everything, we focus on what matters, and we don't take anything for granted.

Although childhood cancer is rare, about 10,450 U.S. kids under the age of 15 will be diagnosed with cancer in 2014, according to the American Cancer Society. There is very little funding for childhood cancer, and the survival rates are much lower for kids than adults.

The National Cancer Institute spends less than 4% of its funds on childhood cancer research. There have only been two drugs approved specifically for children in the last two decades, compared to thousands for adults. All the cancer drugs Hannah has used are only approved for adults.

Kids don't vote, and they don't have a voice. I didn't know how little research was done for childhood cancer until Hannah was diagnosed.

Now that I know, I do everything I can to spread awareness and raise funds for much needed research. You just never know when someone in your family or circle of friends could find themselves in our shoes.

Please help us to spread awareness. I am shaving my head on Sep. 19 to raise money for research for all childhood cancers. What are you going to do?