Thursday, March 16, 2017

Time to Push Pause

So last Friday, Tillery had a 9 hour major brain surgery and then was discharged on Tuesday with a prescription for Tylenol that she's never needed. That's how our girl does brain surgery! One surgeon actually commented to her that "It's not drive thru brain surgery, you are allowed to stay a few days and recover."

We have had our share of hard recoveries and delays that last an uncomfortably long time. In fact, having Tillery follow a plan and actually be ahead of recovery is very out of the ordinary, so we are having a hard time processing this! To think that she has to stay home from school and church and social settings for a few more weeks is hard with as well as she seems. It feels like she's right where she was this time last week.

So here is where things stand:
We will return to Cincinnati the first week of April. Tillery will have an MRI to make certain that her brain looks healed from surgery and then we will meet with her oncology and neurosurgery teams. She will have her stitches removed, we will give out hugs and high fives and we will say "see ya later" for 3 months. This will be our new routine: quarterly MRIs and follow ups with the teams. There is no future treatment plan at this time. As this chapter closes, we also close the entire volume. In the future, if there is growth, we will begin again, but for now we press pause on our cancer journey.

This is all very bittersweet.

Yes, we rejoice at how far she has come! Yes, we rejoice that there is no more chemo! Yes, we rejoice that there is no more surgery! BUT, there are things we know...

The chance of survival from a pediatric brain tumor is 66% over 5 years and we are at the halfway point.

The chemotherapy that ran through her veins 64 times has late side effects. We know a child who ended treatment on the same drug 2 years ago and is just now seeing the cognitive side effects.

The chances of developing a chronic health condition as a result of childhood cancer treatment is 95%.

Tillery's team seems to expect to see her tumor grow in the next 2-5 years, or to put that in Tillery's world, Kindergarten - 3rd grade.

We have watched many children leave this world. We have seen many children affected by harsh side effects. We have seen kids beat one cancer and then develop a secondary cancer. We have seen kids who heard the word remission and then had that word taken away.

We will not live in fear. We will also not live in ignorance.

This is why we push so hard for research funding. We know that Tillery's journey is never over. We live with so many unknowns and we push for research to lessen them. We want kids to not only beat cancer, but also to be free of it. We want the dark cloud of looming side effects gone. We want kids to be kids who grow up to be adults. And we want parents to get to breathe again.

We will continue to raise awareness and research funding. We will keep sharing our life and our daughter as the face of surviving. We will never forget the friends we've lost and will work hard to make sure you never forget them either. We will keep being real.

All that said, we hope our time of updating about Tillery's medical concerns is coming to a close. Thank you for loving her so much.

Saturday, March 11, 2017

Better Than the Best Case Scenario

When you have a baby you spend a long exhausting day at the hospital (even if you aren't the one in labor) and then at the end of the day, you are given an amazing miracle in the form of the gift of life. Yesterday was a long day and after logging many hours in the waiting room and many trips to the cafeteria, we were given an amazing miracle in the form of the gift of life.

Coming into this surgery we were struggling with the knowledge that this surgery was our decision. (Many factors played a part in making this decision and many of them had less to do with a medical necessity and more to do with insurance coverage.) Tillery's surgeon gave us the option to take a healthy and strong child into the operating room for major brain surgery or to wait and watch the tumor and return to the OR when growth happened. In the end, the decision was ours and we chose to proceed with a scary and risky surgery.

The plan was to make some room in in Tillery's brain. Her tumor involves a large fluid area that had formed into cysts and we wanted to break those pockets up so they did not fill with pressure. The plan was to try to safely remove some of the solid tumor as well. Because of the location of her tumor, we know that a full tumor removal will never be a safe option and she will always have some mass that remains. Now that she has completed chemotherapy, she will be having quarterly MRIs done to measure and track the size and make up of her tumor. This surgery allows for space for the tumor to have safe growth, if it does begin to grow again. We wanted to give room for new growth to not cause permanent brain damage. The surgery was estimated to last under 6 hours.

That was the plan...

Tillery's surgeon came to meet with us after surgery was completed...NINE HOURS LATER. He told us that he followed the same incision area from her first surgery for tumor debulking. Her bone had fused back so well that he had to make a fresh cut but that was good...hoping she heals like that again. Under the bone flap he found...wait for brain growth!! This is so amazing and gives so much hope that after this surgery, the debulked areas will also fill with new brain growth! Wonderful! Because there was new brain growth, he didn't want to open the area very wide, not knowing what might be happening in that area. So he opened a smaller area than he originally planned and tried his best to work around the tumor to get the cysts broken up. (He first told us that he didn't think he got them all but a later CT scan showed all the cysts had been broken up!) Then for our final big news! Tillery's first debulking surgery removed about 10% of the mass and we were prepared for something similar with this surgery. Dr. V told us that he kept going, basically coring out the center of the tumor and he felt like he removed about 40%! FORTY!! The news from Dr. Vadivelu was amazing, miraculous news! Better than the best case scenario we had imagined! What an amazing blessing!

Today, Tillery had an MRI to confirm the news from Dr. Vadivelu following surgery and to make sure everything looked fine post op. All looked well and we were able to see on screen the side by side comparison images to show what a difference a day in the OR made in our precious daughter's brain.

Following the MRI, we were discussing extubating her. The neurosurgery team started removing her bandage to be able to reprogram her shunt following the MRI and she started fighting. Joe held her head and spoke softly to her while I held her IV covered arms down. A team gathered in the room and decided to go ahead and extubate even though it was still a little early. The tube came out with some fight from Tillery and almost immediately we were seeing our girl back with us. We would ask her questions and she would nod and then she started blinking her eyes. She has a favorite story she has recently made up about a pigeon who goes to a pizza place and we talk about all his favorite pizza toppings. There is one specific topping that Tillery thinks is really funny. As we were talking to her, I asked if she wanted a pigeon story and she nodded. When I got to the part where we discuss toppings, we all got teary eyed when she softly said "nachos", her favorite silly topping! And with that, we knew our girl was still with us!

The rest of today she's been becoming more and more alert. She's told knock knock jokes and requested favorite videos. She has Facetimed with a few friends. She ate 3 packs of graham crackers, 2/3 of a quesadilla, 1/2 a banana, and some peas and carrots. And she's gotten very silly and chatty tonight.

Tillery has especially liked her night nurse, Ryan. She told him all about her brother, Luke Phillips who is 5 and in Kindergarten. She told him about our white dog Emma who is at the pet hotel. Then she invited him to sit with us and be her best friend. As he set up her meds on the pump she kept asking about each one and then said "I'm just s curious bird!"

Yep, our girl is back. It's a miracle!

Here are links to some open fundraisers to help us fund a cure:

Awareness T-shirt

Tillery's Hustle for Hope 5k

Stitch a Thon (pledge $1/stitch from tomorrow's surgery)

To make a donation to Tillery's family

Tuesday, March 7, 2017

Last Day at Home, then Cincinnati Bound

Today was our last full day at home. Tomorrow, Tillery and Alana will head to Cincinnati to begin prep for surgery. Joe, Luke, Nana and Poppo will join us in Cincinnati on Thursday evening. Here is what our day will look like on Thursday:

We will wake up early for a big breakfast because Tillery cannot eat anything after 8:00 a.m. (until after her 5 pm scan!!!)
Meet with neurosurgery at 1:00 p.m. to ask final questions and sign all consent papers for surgery and anesthesia.
At 4:00, we report to radiology to get ready for a 5:00 p.m. MRI that will include having her head marked for surgery.
Following the MRI, Tillery will be admitted to A7, the neurosurgery floor of Cincinnati Children's Hospital. They want to keep an eye on her through the night and will be able to have her prepped and ready for surgery on Friday.

Tillery's surgery is scheduled for 11:00 a.m. Friday morning. They expect her to be in the PICU for 3 days and then to return to A7 for another 3 days. All of these days are long and exhausting. We appreciate all prayers and good thoughts you want to send our way.

If you'd like to join our Stitch-a-thon, donating $1 per stitch to pediatric brain tumor research in our honor, we will probably not have a number of stitches until early next week. Comment below if you are in for the Stitch-a-thon and we'll keep you posted!

Here are some pictures of our last day was a busy one!

We met this Smokies mascot in the oncology clinic at ETCH. Tillery was skeptical and wanted to know "how did he get a superhero cape?" Good question!

One last snack from the ETCH oncology snack basket!

This afternoon we went to Luke's class and talked about Alex's Lemonade Stand Foundation and how they help kids like Tillery. We read the story book about Alex and her Lemonade Stand. The kids all got coin boxes to take home with them and we all enjoyed some lemonade while coloring ourselves at a lemonade stand.

Free Pancakes on National Pancake Day with the Vaughns! (Notice Tillery sat on their side of the table!) They were taking donations to our local children's hospital so it was a win-win.

Tillery got to meet some beauty queens. She's had a longstanding friendship for Miss Haven Wolfe who we met at the Ronald McDonald House but Tillery wasn't so sure about these new friends. She asked "How did you get to be a princess?" (She's really not taking anyone's accessories for real today. She wants to see some credentials!)