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

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