One of the hardest posts to write …

I wish I could say that in the nine years we’ve been advocating for childhood cancer, we have seen a decrease in childhood cancer rates. This is not the case.

Childhood cancer rates have increased 29% in the past twenty years. That’s right, 29%. This disease is not rare, nor does it discriminate. I’ve seen it take down families of all races and economic status.

I wish I could say that in the past nine years, there’s been an increase in the number of new drugs specifically formulated for childhood cancer. This is not the case.

In 2015, there were 51 new drugs approved by the FDA. Only one out of 51, Unituxin, was specifically created for childhood cancer. Out of all drugs in 2015 approved by the FDA, only 2% of those drugs were intended to help children battling cancer. You may think, “well, that’s just 2015. Surely, in the past twenty years, there have to be at least 10 drugs created for childhood cancers?” Sadly, no. There have been only three drugs specifically formulated for childhood cancers since 1995 out of 632 new drugs approved by the FDA in that time frame. That means, only 0.5% of all drugs approved in the past 20 years were made specifically to help children battling cancer. In fact, most therapies given to children battling cancer were never formulated for their little, unique bodies. The long-term affects and secondary illness that many of these drugs have on these children is devastating.

I also wish I could say that in the past nine years, the National Cancer Institute increased research funding for these children since there is little being spent by big pharma on childhood cancer research. Sadly, I cannot say this is true.

The National Cancer Institute allocates just 4% of their research dollars to childhood cancer funding. That’s right, just four cents on every dollar is put aside for our children. Please don’t get me wrong, I am not saying other cancers and critical illness are not important. But children battling cancer deserve more than 4% of available funding. It’s as if we are putting our kids in a hot, barren desert and giving them a water bottle only 4% full. The journey will be excruciating for all, and many will not survive it. We have to do more for our children.

And this last point, this one is the hardest for me to write.

I wish I could say none of our friends have been affected by childhood cancer. Oh how I wish I could say that. In 2013, we wrote about kids we have known personally who have been diagnosed. Kate Rhoades was mentioned in that post. I have known Kate’s mom, Lindsay, since the mid-90s, when we worked together at a non-profit. Lindsay and I were pregnant at the same time in 2011 – I with our third and Lindsay with her first, Kate Olivia Rhoades.

On August 15, 2013, Kate was diagnosed with Pre-B Acute Lymphoblastic Leukemia, you know, the “good cancer.” (Please, if anyone ever says that, slap them. There are no good cancers). Kate, was just two and a half years old when she was diagnosed. She was put on the standard protocol for children diagnosed with ALL, which is a little over two years of chemotherapy. Yes, you read that correctly, two years. But, Kate was mighty and surprised her doctors and her parents by how well she did throughout. Don’t get me wrong, it wasn’t all roses. There was a nausea, fear, tears, and bad, bad steroid weeks. But Kate had a tremendous support system of family, friends, doctors and nurses carrying her through. Kate also had Lovey, her sweet, pink comfort bear-blankey, who was always by her side.

On September 14, 2015, the Rhoade’s rejoiced at Kate’s last day of chemo. It was time to celebrate! Kate was in preschool, there were fall outings, and a Disney trip through The Make a Wish Foundation. Lots of time to be recovered after two years of cancer treatments, that’s for sure! And, Kate relished in her new, cancer-free life! In mid-December, Kate had her four month post-treatment counts done and everything came back great!

I wish I could say that’s how Kate’s story ended. But, cancer is viciously cruel and insidious. It lurks in the shadows, undetected and unsuspected. On January 11th, Mike and Lindsay took Kate to the hospital after she’d been sick with what seemed to everyone, including doctors, as a cold. On January 12th, just 15 hours after being admitted, Kate was gone.

From she’s perfect to she has relapsed took 26 days. From relapse to “there’s nothing more we can do” took 15 hours.

Last night, we took a very, very sick Kate to the PICU where the amazing team did everything they could. Leukemia had absolutley taken over. Her spleen & liver were enlarged. There was an infection in her blood. They could not stabalize her and she quickly reatained fluid. Her heart could not handle the pressure. They did CPR on her twice before our very eyes.

They did all they could. But this morning, our angel, our Kit Kat, and the world we live in died.

We are home and accepting love.

The above was posted by Lindsay the morning Kate was taken from them by cancer. The post is heart-wrenching, and brings back a flood of memories from that morning. Where I was when I heard the news. How I wailed and cried for it not to be true. And memories of the weeks following. Visiting Lindsay and Mike at home, seeing Lovey right next to Lindsay, within arms reach. Attending the funeral for Kate and seeing a tiny, white coffin adorned with flowers at the front of a church. Listening to Lindsay’s beautiful words she wrote to Kate in a letter just hours after Kate died. Watching my breath hit the cold, winter air as I recited Psalm 23 at the burial, praying for all of it to be a bad dream.

This is childhood cancer. This is the reality. It’s a devastating disease that thrives on the element of surprise. And it’s on the rise. A child is diagnosed every two minutes and seven children die from cancer each day. We have to do more. We have to stop this from becoming a reality for even one more child.

We urge you to follow Lindsay’s writings on The Prayers for Kate Facebook page. Her writing is beautiful and captivating. In it, you can feel the pull of joy and grief, oftentimes in the same sentence. She will continue to share about Kate, which blesses her and Mike immensely. For families who have lost their children to cancer, one of the only fears they have left in life is that their child will be forgotten. Do things to honor and remember Kate and other children who have lost their battle to cancer. Following the Prayers for Kate page will help do that.

Other ways you can help:

• Share posts from the Prayers for Kate Facebook page, the Truth 365 and other childhood cancer groups to help spread awareness. One day, gold in September will be as ubiquitous as pink in October.
• Sign the petition at The Truth 365 to make Childhood Cancer Research a national priority.
• Hold a lemonade stand, jump in the Virginia Polar Dip, perform a #RandomActOfKateness, shave your head, or just share Kate’s story with one person today.
• Visit Salon Khouri to make an in-salon donation to The Pediatric Dream Team of Oncologists via The Truth 365 and help our store front to go gold this September.
• Have a $10 yellow-gold extension added to your hair at Salon Khouri with net proceeds being donated.
• Get a haircut in September at Salon Khouri and we will donate $1 from every haircut to AWOCCF/The Truth 365.
• Come to CureFest in DC! It’s a FREE family friendly event where you can learn more about childhood cancer and organizations working to make a difference. There will be face painting, music and a Crazy Hair Day booth 😉
• Pray for these children, their families, and for researchers seeking to find less toxic treatments for children battling cancer.