Josh Jill and Harleigh - Cancer care and support

With permission, I'm reaching out on behalf of a lifelong friend Josh Hines. Husband to Jill and Father to Harleigh. Below is what has happened in the last two days.

From Josh's Facebook post:

"Harleigh has been diagnosed with DIPG cancer. It is a terminal diagnosis. Right now, we don't know how much time we have with her. The typical timeframe for this diagnosis is between 8 months to 2 years. We don't know when we will know more. We will try to let everyone know as we are able. We love you all."

It is going to be a long, difficult road in a short amount of time with their precious Harleigh. Anything we can come together to do for Josh and his family financially to help alleviate even the smallest amount of stress and worry will hopefully make it so they can focus on spending the ever valuable time with Harleigh.

Here is an update of the story the family posted from the beginning:

Here is the beginning.

On June 17th, Harleigh went on vacation to South Carolina. She was staying with her Grandma Jane. They spent the week at the beach. On June 25th, Josh and I joined them. We went to the beach on June 26th and I injured my foot. Josh and I spent the day at Urgent Care. That evening, we went out to dinner and I started not feeling well from the tetanus shot so we packed up and left. As we were leaving, Harleigh fell face first onto concrete. A busted lip and chin were her injuries.

As the week went on, she decided to start shoving large amounts of food in her mouth and not really chewing it. Her speech was slightly off, but we attributed it to the busted lip. And she started walking weird. We got new shoes, went to the chiropractor and restarted her ADHD medicines (which we had stopped for the summer on advice of her doctor due to weight loss). All helped for a moment. Monday July 4th we got back into town and decided that she needed to see her doctor. Something was wrong.

We were with friends and noticed her eyes were unfocused and we then started being concerned about a concussion or an inner ear infection. Her doctor's office did not call for an appointment, we were out of the timeframe for concern so we sent her to daycare. They sent her home. We took her to urgent care at Children's downtown thinking ok they will give us antibiotics or concussion advice and send us home.

Urgent care sent us to the ER, said there was something more going on. So, the ER thinks maybe it is a post infection brain swell. They order an MRI. And that is where they see it.

A tumor in the pons region of the brain. Specifically, Diffuse Intrinsic Pontine Glioma (DIPG). This is a cancer mostly affects children. It is aggressive. It is treated by radiation only. It cannot be removed via surgery. In 80 - 90% of cases, the radiation will stop the progression for a period of time. Rarely, in some of those cases, it can shrink the tumor. And in the other 10-20% of the cases, the radiation has no affect on the cancer.

It is treated the same way in 2022 as it was sixty years ago in 1962. And our neurosurgeon said that most of the neuroncology team here at Children's consider this cancer their biggest failure. There is no cure. Only 10% of children survive for 2 years following their diagnosis and less than 1% survive for 5 years. The median survival time is 9 months.

She had a wonderful splash day party with friends and family on July 9th. We made sure to post to the ones that joined us cannot tell her to fight this. Because it is a fight that she will lose. And she does not deserve to have the feelings of guilt that come with letting people down that "if she had just fought a little harder" she could have defeated the cancer. She can't. She likely won't. And in 60 years, all the doctors and patients who have fought this, have been defeated by this. She is strong and strong willed, but unfortunately, in this case, it will likely not save her.

Thank you for your love and support. We are going to do everything we can to help this little girl have the best life possible.