Friday, May 20, 2016

Day 20: Meet Our Oncology Team

On our very first drive to Cincinnati, the day after diagnosis, my cell phone rang with a number I did not recognize. The soothing voice on the other end of the line identified herself as Dr. Maryam Fouladi. She told me that the number was her cell number and asked me to save it into my phone and call her anytime I had questions. Her plan was to meet us in the emergency room later that night once we arrived in Cincinnati. She is the Medical Director of the Neuro-Oncology Department at Cincinnati Children’s Hospital and is the one who lead us into the world of childhood cancer.

With Dr. Fouladi was a younger woman who introduced herself as Dr. Lindsey Hoffman, the Fellow. Dr. Hoffman was with us from the beginning. She was the person who took notes for us while Dr. Fouladi explained the pathology and gave us the original diagnosis. She has been the one to tell us the news that Tillery’s tumor was shrinking and has also been the one to tell us when it grew. Dr. Hoffman became a faculty member at Cincinnati Children’s last Fall and is now the lead oncologist following Tillery’s care.

In addition to our two lead oncologists, our team is made up of a nurse practitioner (Elizabeth), a care manager (Heather), and a social worker (Mandy). I have to make mention of two who are no longer with our team but who were like family to us for a while early in the game.

Michele was our care manager when we first came home from Cincinnati. We spoke multiple times a week as those first few months home were scary and Tillery was not well for most of the time. She was more than just a person who conveyed messages, she became my friend. Michele left Children’s back in the Fall to go work with adult oncology patients. I can’t imagine how hard it must be to watch so many children suffer and to comfort so many terrified parents. Michele and I continue to stay in touch and she is always thrilled to see how well Tillery is doing these days.

Another dear friend from this journey is our first social worker, Maureen. Maureen visited with us every single day we were at Cincinnati Children’s. Whether we were admitted to the hospital or just there for a clinic visit, she always came by to check on us. Maureen had worked with cancer patients for all of her long career and knew all the right things to do and say. She was always dropping by with a meal card, a gas card, or a toothbrush and sweatpants. When we were in the PICU, the walls were glass with a curtain we could pull that went only almost to the floor. We would watch the shoes coming down the hall to see who was coming. When we saw the red flats coming our way, we were always relieved because we knew we were about to chat with a wonderful woman and friend. Maureen retired (for a second time) last year. We will never forget how big of a support she was to us during those intense first few months. She went above and beyond.

The people who make up your child’s oncology team become more like family than just a group of medical professionals. They have seen us when we haven’t slept or haven’t bathed. They have woken us up to bring us news. We have cried happy tears together as well as sad ones. We hug every time we see one another and it always feels genuine. And we have laughed, oh how we have laughed! It sometimes feels wrong to laugh as much as we do together.

I leave you with our favorite quote from Dr. Fouladi. When the pathology first came back, she came to Tillery’s room with a big smile and declared, “She will not die from this!”.

May all parents here those words one day.

Below are pictures from the Pray, Hope, Believe 5k last July of Tillery with Maureen and Tillery, Luke, and I with Dr. Fouladi and her son.

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