Saturday, December 31, 2016

End of Year Updates and Beginning of Year Plans

557 days

That's how long it has been since the last time we saw tumor growth. On June 16, 2015, after 2 monthly doses of Carboplatin, the chemo we planned to use to stabilize Tillery's tumor, an MRI showed growth instead of stability. It hit us hard and unexpectedly. We had been going through 8 months of hiccups and hurdles and we were just exhausted. We wanted SOMETHING to go right and yet, there we were, another hiccup, another hurdle.

Since then, we found a new chemotherapy that did it's job. Tillery did 52 weekly doses of Vinblastine (with more hiccups and hurdles mixed in but at least the chemo was working). We ended chemo on December 5th, just a few weeks ago. It was an anticlimactic end to chemo, as we didn't realize it was the last dose of chemo until after the appointment so the day went by the same as any other chemo day.

I was a little bummed that we didn't do the end of chemo party. There wasn't a cake and there was no picture of Tillery holding a sign that said "Last Dose of Chemo". I wanted to have that celebration that so many of our other oncology friends have had. But really, when we thought about it, it wasn't our time for a party. We knew another surgery was looming. We knew that a mass still resided in her head. We knew that it was possible that we would need to resume chemo in the future. We weren't yet at a time for celebration.

So the plan was to travel to Cincinnati on January 26th for another MRI and to meet with neurosurgery to plan for and schedule surgery. If you've followed Tillery's story for long, you know, we NEVER follow the plan.

Friday, December 23, Tillery had a fall in our kitchen and hit her head. She couldn't calm down so we went to the ER to have her examined. The concern when she falls and hits her head is always her shunt, so that's what we were looking for on an x-ray. All looked good and we were sent home. We were told if she had any signs of shunt malfunction in the next few days to return for a CT scan.

Sunday, December 25, Christmas morning, Tillery woke up vomiting. She wasn't acting like she had a stomach bug. It was a strange, unexplained vomiting. It reminded us of the time she had shunt troubles so we decided to take her to the ER again for a CT scan. Again, they were focused on her shunt and it looked fine on the scan so we were sent home for presents, food, and family.

Monday, December 26, the follow up nurse from the ER called. She said that a full radiology report had been written about Tillery's CT scan and while the shunt and bone flap both looked fine, the scan showed slight tumor growth in the solid portion of her tumor. She started reading off measurements but I couldn't focus on her words anymore. My brain had moved on to next steps. We needed to get that scan to Tillery's neurosurgery team in Cincinnati. They needed to compare it to their latest scan and determine if there really is growth. I decided right then to assume that our local hospital must have something wrong and they just needed to step aside and send that scan on to the experts. We haven't had any bad experiences at East Tennessee Children's but in that moment, I needed this to be wrong!

A few issues:

  • It was the day after Christmas, which was being taken as a holiday day at all of our clinic offices. Getting an on call team involved seemed unnecessary so we would have to wait until regular office hours.

  • It was the week after Christmas, when many people were out of the office or taking it easy. It was going to be difficult to get communication flowing with missing team members and even harder to get a plan.

  • HIPPA rules that are supposed to protect patients also make things harder. Getting a CT scan from one hospital to another is not as easy as today's technology would lead you to assume. It took 2 days to get the scans from one team to another.

So, it was Thursday before I received a phone call back from Cincinnati Children's neurosurgery. (I should note that I spoke with them multiple times each day in between but it was that long before we got a phone call with news.) Our surgeon received the CT from Tennessee and compared it to the scan from November. There was indeed growth.

Thursday night, we sent an email to our full team: CCHMC Neurosurgery,  CCHMC Oncology, and ETCH Oncology. The email detailed our concerns and our desire to move up the MRI date.

Yesterday, we got our plan for next week. We will travel to Cincinnati on Monday evening for an MRI on Tuesday. Wednesday, we will have a free day and try to do some fun, family things in Cincinnati, turning another Cincinnati trip into a "vacation". While we are off enjoying family time, our neuro and oncology teams will be meeting to discuss options for us. Thursday, we will meet with our teams to determine our plan of attack.

This is hard news but we've been here before. In fact, during the past 2+ years, we've spent more time revising plans that actually staying on plan. Our story is one of emergencies, unexpected outcomes, and road blocks. That said, each time, we've gotten through. During the time that we have dealt with so many hard times, we've also experienced some amazing things.

In the last year:
  • Tillery learned to walk.
  • Tillery started eating and drinking by mouth.
  • Tillery started a school program that she loves.
  • Tillery has only had one hospital stay and it was planned.
  • Our family took our first family vacation that did not revolve around a hospital trip.
  • We raised over $11,000 for pediatric brain tumor research and held 2 more blood drives.
  • And, even if it's short lived, Tillery ended chemotherapy.
We look forward to seeing what 2017 brings. We focus on the hope we have for Tillery's future. We continue to feel God's presence and see Him working in our lives. We know that Tillery is a special child who is touching lives and we are blessed to be the family who gets to love her. Thank you for loving her with us.

1 comment:

  1. Praying for Tillery and you, Joe, and Luke. ❤