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

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