Two years ago today was the hardest day of our journey. This is the anniversary of the day we almost lost our daughter.
If you have followed our story for long, you have heard about this day many times. It haunts our memories and we reference it often. For those who don't know the story, here's the abridged version:
Tillery had a major brain surgery to debulk her tumor on October 2, 2014 that had her in the operating room for 15 hours. As a result of this lengthy but life saving surgery, Tillery developed a large blood clot in her brain and had to go on a blood thinning medication. On November 15, 2014, Tillery fell off the bed at the Ronald McDonald House and hit her head on the hardwood floor. The fall that would have caused discomfort and possible bruising for any other kid, caused a massive brain bleed for Tillery. She was rushed to the ER and into the trauma bay where she remained for hours. She was given an endless supply of blood products to thicken her blood and was covered in a variety of monitors to see how her body was responding. We were told that surgery was not an option at that time because of the blood thinners but she would need surgery soon to relieve the swelling and drain the bleed. As time went on, the story changed...Tillery's pupils became different sizes and she stopped moving her left side. The surgeons believe that if we waited much longer, she would have permanent brain damage. Surgery needed to happen immediately, even though the risk of bleeding out was high and chance of survival was low. As they took her to the operating room, we were unsure if we would see our child again.
That night was a nightmare. It is something I still see vividly when I close my eyes. I remember faces and actions from that night. I remember the bright lights in the trauma bay and the crowd that surrounded Tillery. I remember being asked to step out of the room and watching from the hallway at times when she was screaming and even more terrifying, when she was silent.
I want to share 2 stories from that night with you. They were the stories of hope. They were the people who stepped up and did something huge with a very small action.
The first story is of the OR nurse. She came to me soon after we arrived and she told me that she would be the nurse in the operating room whenever they felt it was time to take Tillery there. She took my hands in her hands and looked me in the eye and said, "I have a granddaughter who shares Tillery's birthday. When I saw it on her chart, I knew she was special." She let go of my hand to turn her name badge over and show me a picture of a smiling child taped to the back of her badge. She told me that she would be taking extra care that Tillery had all she needed and was safe. As Tillery was in surgery that night, I had took comfort in knowing she had someone who had found an emotional connection with her in the room.
Then there was Josh. Josh was a neurosurgery resident who we had met when we first arrived in Cincinnati. The residents are usually more visible to families than the attending surgeon so we had talked with Josh often. He always wore green scrubs and a lanyard with his name badge that was decorated for University of Miami (in Florida). We had seen him many early mornings and late nights. In the hustle and bustle of the trauma bay that night 2 years ago, he was the only familiar face. He was not a particularly smiley guy and was always just straightforward. When the anesthesiologist had explained to us all of the risks of surgery (and there were so, so many), they emphasized the risk of bleeding and the possibility of her not surviving. Josh came to me and looked me in the eye. He said, "I've been in the OR for all of her previous surgeries and I will be in there again today. I will bring your daughter back to you."
Tillery's life was saved that night by Dr. Francesco Mangano, who drained the bleeding, removed her right bone flap to allow for swelling, and put in a drain to continue to relieve bleeding and fluid. Her life was saved by an anesthesiology team that had to go to such lengths to reverse the thinned blood and keep her safe that they had us sign consent for them to write a medical journal article about it. She was saved by a host of doctors, nurses, and support staff who worked feverishly in the trauma bay, operating room, PICU, and neurosurgery floor for weeks to get her back to a safe place that allowed her to leave the hospital right before Thanksgiving.
I will forever remember the details of that night. Mixed in with all the horrors, the bright and shining beacons of hope that were seen through the OR nurse and Josh the resident are also very vivid.
It's amazing how much hope can be found in having someone who really sees you. I challenge you to find ways to show people, even strangers, that you see them and you care. You can do big things through small actions.
As always, thanks for loving Tillery and seeing our family. Your support helps heal our brokenness.
This was Tillery 2 years ago today.
These pictures are from the oncology clinic yesterday, as Tillery was taking her baby's "pressure".