Well, we made our first Cincinnati trip of 2017 on January 2nd and all 4 of us went. We were prepared for hard news and immediate plans to jump back into treatment. Instead, we were given good news and no plans, yippee!
On January 3, Tillery had an MRI. Probably the most difficult part of our entire trip was keeping Tillery from eating before her 12:30 appointment. As she said multiple times "I'm so sad about you not letting me eat!" which was always accompanied with folded arms and a pout. But we spent the morning running around the Ronald McDonald House in our pjs, playing in the playroom and game room and reuniting with old friends to pass the time. When it was finally time for Tillery's appointment, we all went together to the hospital and went back into the small holding room in radiology together. When it was time, I walked her back into the room and held her as she was put under anesthesia and then passed her off to the team and went back to the room where Joe and Luke were waiting. We asked Luke if he was ready to go get lunch but he was worried we were forgetting something, "What about Tillery?" We explained that Tillery was with some really nice doctors who were taking her picture while she took a nap and as soon as she woke up, we would go back to see her. Explaining things to Luke has always been easier than we expect and I'm so thankful for the innocence of children as we navigate this world of medical complexities.
After about an hour and a half, I was called back to the recovery room. When I walked through the door, I heard a commotion behind the curtain and when I opened it I found Tillery fighting a nurse to get her IV out! This child has come such a long way in the 2 years we've been doing this and watching her fight back always reminds me of the fight she has in her. She's strong willed and determined and those are wonderful qualities to have in her corner. The nurse removed the IV and Tillery started fighting to sit herself up. She was still drowsy and couldn't handle her head well but she was ready to get out of there and she knew the drill. She wanted to sit with me and wanted "something to snack" immediately. They brought her a cup of water and some Saltines, which she devoured. They cleared her to leave radiology and we made a trip to the 8th floor to the neurosurgery clinic to have her shunt reprogrammed by one of our favorite nurse practitioners.
While Tillery and I were having her shunt reprogrammed, Luke and Joe were attending to some serious business...acquiring tickets to the children's museum. Wednesday was an appointment free day for us and we wanted to have some Cincinnati fun so the boys went to the Family Resource Center at the hospital and got us free tickets to the museum.
Wednesday went like this...
- Checked out of the Ronald McDonald House (they were booked up for Wednesday night)
- Found a local diner for breakfast, including Cincinnati's famous goetta
- Played hard for a few hours at the children's museum
- Checked into our favorite hotel when we can't get into the RMH
- Went to dinner at Montgomery Inn, famous for it's ribs
- Settled in for the night
Wednesday we stayed busy enough so we kept our minds off of the looming appointments. Thursday morning, we woke up and looked out the window to see a winter wonderland. The kids were thrilled to see snow and loved watching a snow plow clear the parking lot. We headed to the hospital to meet with oncology at noon.
The first person who came in was Elizabeth, our nurse practitioner. She began by launching into, "The scan is stable.". We were happy and confused. She had us recount the past few weeks and the series of events that led us to being in Cincinnati. Then she briefly talked about how CT scans and MRI's are very different types of imaging. Different radiologists also measure different ways and the complexities of Tillery's type of tumor make it even more difficult to gauge the exact measurements. All that said, the scan from November 10 and the scan from January 3 were virtually the same image. No new growth!!
Next, our oncologist, Dr. Fouladi came in to discuss the news further. While we were expecting to work out a battle plan, instead, we were hearing that we are remaining OFF of chemotherapy! It's hard to describe how weird this all was for us and while you might expect us to be jumping for joy and high fiving, instead, we just kept asking questions and learning more about Tillery's tumor. Our knowledge has come in waves, almost as we are able to process it we learn more. So, while Tillery's diagnosis falls into the category of low grade glioma, we learned that there is a very small chance that it could develop into something more aggressive. It's not likely but that is why quarterly scans are so important and acting on new growth immediately is essential. We have always been told that this type of brain tumor isn't considered terminal, but is like a chronic medical issue. We may go through periods of time when it's dormant and it can flair back up at times, too. The chance of regrowth/new growth is 60% in 5 years and they seemed to talk as though they expect growth in Tillery's case. They said we may go months or years without growth but if/when growth occurs, we would do a biopsy to see what we are dealing with and then look at chemotherapy options again. Our heads were swirling as we ended our meeting with oncology and headed upstairs to see our neurosurgeon.
While Dr. Fouladi had pulled up the MRI imaging and talked to us a bit about it, Dr. Vadivelu went a little more in depth about the tumor and what the next surgery might look like. As we have always known, Tillery doesn't have any extra room in her head. This means that if there is tumor growth, we will likely know it because we will see symptoms. Typically, brain tumor growth shows itself as headaches, balance issues, and vomiting. In looking at Tillery's scans, her tumor is made up of a solid portion and also a large cystic (or fluid) portion. The cysts are more unstable than the solid mass and can have increased size or pressure that happens quickly. Dr. Vadivelu talked to us about location of the cystic portion and how growth in those areas could result in seizures or in brain damage to the thalamus, which is the hub of information in the brain. The next surgery would be to remove the cysts as well as some of the solid tumor. Removing these cysts, reduces the risk of the side effects like seizure and brain damage but those same things are risks associated with the surgery itself. At this time, the surgery can happen any time. We could schedule it now and have it out of the way, but risk damage during a time when she is otherwise healthy and thriving. Or, we could wait and see how she does off of treatment and watch the tumor closely for growth. Whenever growth occurs, we could schedule an emergency surgery to do what has already been discussed as well as debulk any new growth. The risk in waiting is the possibility of damage or side effects if there is growth.
There is no right choice but it is ours to make. Joe and I are going to be praying over this decision and ask you to join us in prayer. Both options have risks but we are also very grateful to be in a position where surgery is not vital at this time and there are choices. We will continue to stay in touch with the team, asking them questions as we have them and we will be doing some research on our own.
At this time, Tillery is done with treatments. She will have quarterly MRI's to track the tumor. She will go once a month to the oncology clinic to have her port flushed and to have labs drawn. She is down to one daily and one weekly medication. She's blending in more and more with her peers and we are thrilled to see how far she has come. Her medical team is also thrilled. When they mention the night we all first met in the ER, it takes us back to that day and that place. We can remember every detail. We knew what we were facing was something scary. What we didn't realize was how scared the team was for us as well. She's come a long way and beat some serious odds and we are all amazed to watch her now.
We don't know what the future holds, immediately or long term. We can't predict growth or how she would respond to future types of treatments. That is the difficult part of what Tillery battles. Tillery is done for now but we know that it's likely this is not the end. We can't use the words "cured", "healed", or "remission", those are not words for us.
You hear us talk a lot about funding research. Tillery's prognosis is good. Even though it's long term and even though she's never "done", we have our daughter. So many we have met have lost their children. We think of those families and those children every day when we look at Tillery. All of these kids deserve better. The only way we get there is through research.
To make a donation to our fundraising efforts with Alex's Lemonade Stand, click here. We won't stop until we have beaten this.