Friday, February 17, 2017

Not So Rare

A dear friend asked if she could share Tillery's story on Rare Diseases Day (Feb. 28). As I started to think about it, I realized that the "rare" disease that we are fighting isn't really that rare.

Low grade glioneuronal tumor with mesenchymal differentiation...yes, that's rare. That's the official diagnosis for Tillery's mass. It took 5 weeks and pathologists across the world to finally give a name to this evil we face. When they did name it, we were told that researching it would be difficult because there isn't another case of this exact tumor ever documented. So I guess if you think about that, she's pretty rare.

But brain tumors are categorized into some groups that tend to look and respond similarly. Tillery's falls into one of the most common groups "Low Grade Gliomas". Within that group, Tillery's tumor falls into the category of Low Grade Gliomas - NOS (not otherwise specified) so she's basically in a catch all/other category but still in a bigger more common group.

And then, if you back out further, brain tumors are the second most common form of childhood cancer. Leukemia is the largest majority of childhood cancer types, which is why it's been researched more and has much better outcomes. Brain tumors have been on the rise and are much less rare in the childhood cancer world these days, especially since brain tumors are a common secondary cancer form for children who are originally diagnosed with a different form of cancer. So a brain tumor diagnosis in a child isn't as rare of a thing as you might assume.

Then, to back out further to the classification of "childhood cancer", now we aren't even talking about something rare at all. One in every 285 children will be diagnosed with cancer before the age of 20. Tillery's brother's school has 550 kids in it so statistically, 2 of the kids roaming the halls with him daily will be diagnosed during their childhood. And to back that further, Knox County Schools has 59,516 students enrolled, which means statistically 209 Knox County students will be diagnosed during childhood. That doesn't really sound that rare at all, does it?

We have friends with children diagnosed with diseases that you can name every other child with that disease because it's that rare. We also have friends with children who have no name for their diagnosis because it's so rare, they are the first case. At least for us, we fall into a larger, more common diagnosis that allows for more awareness and more treatment options. Even so, childhood cancer only receives 4% of cancer research funding, making you wonder, if they can't find cures for adult cancers, how will they ever find a cure for childhood cancers? And if they can't cure childhood cancer, how do parents of children with truly rare diseases cope with the knowledge that their rare disease gets even less, if any, funding.

We don't have the answers to solve these issues. What we do have is YOU! As you learn about our story and share our story, it raises awareness. As we share about other kids and other diagnosis, it raises awareness. As awareness is raised, funding can be raised. So continue to follow our story and talk about our story. The more we talk about it, the less rare it seems.

Friday, February 10, 2017


Today we are exactly one month out from surgery. In 4 weeks, we will be sitting in the B3 waiting room at Cincinnati Children's Hospital as Tillery is in the operating room for the 14th time.

Every childhood cancer journey looks a little different. Some kids are admitted to the hospital for very long periods of time and spend much of their time in isolation. Some kids lose their hair and spend their days vomiting from the chemotherapy. Some kids go through daily radiation treatments. For Tillery, her journey has been filled with surgeries.

The thing about Tillery's surgeries is that a majority of them are not "cancer related". I mean, they are all as a result of her brain tumor/cancer diagnosis but most of the surgeries aren't directly "for the tumor".

One surgery removed a pseudocyst that had grown in her abdomen at the base of her shunt.

One surgery was to place a g-tube for feeding when our stubborn 16 month old, who lacked control in most aspects of her life, simply stopped drinking and eating.

A fall that caused a brain bleed resulted in a craniotomy to remove her bone flap and allow room for swelling, then a surgery to replace the bone flap a few months later, and then another surgery a year and a half later to replace her bone with a synthetic piece after her bone never hard fused.

She's had 3 surgeries to place a shunt, 2 surgeries to remove shunts, and one crazy freak accident in which an external valve just fell out of her head while she was sitting in the hospital bed watching movies and we had to rush her to the OR to replace it.

So the only 2 surgeries she has had that were directly related to the tumor were the surgery to place her mediport, through which she received chemotherapy, and the very first surgery she had to debulk the tumor and take samples for pathology.

In one month, Tillery will have her 2nd major brain surgery to remove portions of her tumor. I really wish I had an image of the MRI to post here to explain what her tumor looks like. If you will imagine looking head on at her little face, the tumor is in the front of her head on her left side. In the imaging, it looks like it takes up about 25% of her head space. The tumor is made up of a solid portion that is more in the center of her head and it is surrounded by a large cystic portion. During surgery, the neurosurgeon will break up the cysts and that section will fill with normal brain fluid. He will also remove a safe portion of the solid mass. This should be the last safe amount of tumor removal she will have done. In the future, any debulking surgeries will be to remove new growth.

We are at peace with the decision to proceed with this surgery. The team has eased our fears by telling us that this surgery will be less intensive and less risky than the first. After surgery, there will be less pressure in Tillery's head and less foreign mass. The post-op scan will be the least scary looking scan we will have ever seen of our daughter's brain. We know the risks and we know the positives and we are confident that this is the right decision. Thank you for your support and your prayers. This journey is less scary with so many people in our corner.

Here are pictures from previous surgeries:

October 2, 2014 - First major brain surgery

October 6, 2014 - First shunt placed

November 15, 2014 - Craniotomy to remove bone flap

January 2015 - Replaced shunt for fear of infection

January 2015 - Bone flap replaced

April 2015 - Mediport placed

September 2015 - Shunt removed, EVD placed

September 2015 - More shunt pieces removed

October 2015 - Shunt placed

July 2016 - Bone flap replaced