Yesterday, we had a follow up appointment with neurosurgery to look at how Tillery is healing from surgery and remove her stitches. We have been having surgery follow ups and removing stitches with this team for almost two years. Three different neurosurgeons have performed surgery on our daughter and each one has performed at least one emergency, life saving surgery. Try to wrap your head around that!
Tillery has had 10 sets of surgical stitches in her head and this time, with your help, we changed the meaning of those stitches and that scar. Over $2600 was raised for pediatric brain tumor research! As those 45 stitches were being removed, I kept reminding myself of that figure. It took a solid 30 minutes and 2 nurses plus myself to hold a kicking, screaming, and fighting Tillery to remove those stitches. As she fought, I kept reminding myself that that fighting is what has kept her in the game. She's tough and she doesn't back down. She always fights back.
Our afternoon was spent with a friend who we met when he served us pancakes long ago at the Ronald McDonald House. Rick and Lynne lost their son, Tony, to a brain tumor 5 years ago and they continue his fight through their foundation, Pray, Hope, Believe. Rick met Tillery and I for lunch and then we all went to give blood in Pray, Hope, Believe's name for the "Bleed for a Cause" event they have going on. As I was reclined in the chair, I could see Tillery coloring and reading books across the room and I just kept thinking of the people who sat in the same chair before me and gave the blood that has saved my daughter. Tillery has received blood products during surgery, received platelets to help clot her bleed from a fall, and received blood through a transfusion when chemotherapy left her body weak.
Blood donation is a powerful thing. Blood can't be bought or made, it must be given. I could continue living without that pint of blood and because of that pint of donated blood, now 3 others can continue living. No monetary donation or volunteer project can directly save a life like blood donation can. I urge you to give if you can. Okay, off that soap box and on with the recap...
This morning, we started early with an MRI. I've lost count of the number of MRI's Tillery has had done but she's so much of a regular that they all remember her when we are there. I was able to hold her while the anesthesia team put her to sleep and then they helped me position her on the table. Then, I roamed around the cafeteria and gift shop and met her back in the recovery room afterwards. She woke up fine and asked to sit up and play. She was still groggy when we left radiology and Tillery wanted to FaceTime with Nana. It was pretty entertaining to watch loopy Til slur her words and laugh at herself.
Our day ended with a trip to the new Cincinnati Children's satellite campus in Liberty Township. They have a very large Cancer and Blood Diseases Institute and they house some pretty cutting edge equipment there. Their proton therapy center is one that we may use later in Tillery's life to try to kill the remaining tumor cells. The biggest take away I had was looking at this big two story cancer institute and thinking "there are enough kids to require this giant facility". Wouldn't it be nice to put that place out of business one day?!?
On our way to Cincinnati the very first time, Dr. Maryam Fouladi called my cell phone to check in on us and let us know they were expecting us. She was one of the faces that we met that first night in the emergency room and became a face we looked for daily during the first few weeks we were in Cincinnati. Over the past year, Tillery's care was managed by Dr. Lindsey Hoffman, who we met within our first few days in Cincinnati and she was the Fellow working with Dr. Fouladi. A month ago, Dr. Hoffman moved to Colorado and Dr. Fouladi was again placed as the lead of Tillery's neuro oncology team. It has been over a year since we have seen Dr. Fouladi and I was so excited to share the new Tillery with her! It was exciting to tell about all the foods she eats and to put Tillery down on the ground so that she could show Dr. Fouladi how she walks around.
Getting down to business, Tillery's tumor is STABLE! In the oncology world, a stable tumor is reason to celebrate and we are celebrating having a stable tumor for over a year now! With that report, we worked out a plan for resuming chemotherapy. We have increased the dosage of Vinblastine, which is the weekly chemo drug Tillery receives. She will continue to receive weekly injections through the end of 2016. At the end of December, Tillery will take her last dose of chemotherapy. We will plan a surgery date with her neurosurgeon to remove more of her tumor in early 2017. Then...nothing. We do scans every three months to measure the tumor. If there is growth, we will discuss possible plans to resume chemotherapy. If it remains stable or shrinks, we continue to do nothing. We are seeing the end of this initial phase of treatment. The original treatment plan was to last about 15 months and we are looking at actually wrapping it up in about twice that time. We can see the horizon! We are getting there!
At the end of our appointment, Dr. Fouladi gave me a hug. She said "We have cried many tears together and when we first met, I had no idea what her future might look like. It's a joy to see Tillery and all of her accomplishments and it's a blessing to be sending you back home again."
As I drove home, I kept thinking of those early days. Of not knowing if we would ever leave the hospital with our daughter. Of not knowing if she would survive complications that came our way. Of not knowing how we could manage chemotherapy and all that we anticipated it would bring. But here we are, almost two years and a lifetime later, talking about wrapping things up.
Cincinnati Children's has a new slogan: Changing the Outcome Together.
With the help of doctors Fouladi, Hoffman, Vadivelu, Stevenson, and Mangano, the outcome for our daughter has been changed.
If you would like to make a donation to pediatric brain tumor research through The Cure Starts Now in Tillery's honor, you can still do so here.