This great picture popped up on my Facebook timeline today. It was taken only two years ago when Naya was in "remission". She was so happy to go to on a science field trip, see her friends and have a good day. Look at that smile. I love it, and I really miss it. Sometimes it feels like yesterday, and then other times it feels like another lifetime.
Today is the three year anniversary of the day that I took Naya to the ER. The day I fired her incompetent pediatrician. The unthinkable day that Hank and I learned she had a brain tumor. I remember and forget a lot about that night and the following day. I took Naya to the ER, and on the way to the ER, I vividly remember telling her how lucky we were to be healthy, and she would be okay. To this day, I feel like I lied to her. I just didn't know. I remember the heavy traffic, heavy rain, talking to my friend Patti about her future husband. I remember Naya asking Patti about her date and laughing even though she had a pounding headache. I also remember opening the window so Naya could throw up outside.
We got to the ER, and within 5 minutes, the triage nurse realized Naya needed immediate attention. She told us to "fire" our pediatrician; I told her that I had already done so. I was feeling great, like I was some kind of genius. In reality, I was a fool.
Within minutes, tests started. The young Fellow told us they wanted to do a cat scan to rule out the "really scary stuff". She probably never found "scary stuff" in the ER, so it was a passing, but stupid, comment. I'm sure at the time she had no idea that Naya had a deadly brain cancer that had already spread to her spine. Neither did we.
We went to get something to eat when we ran into the ER attendee on call. She said they had tests back and we should get back. I could see in her eyes something was very wrong. The next thing I remember is the Fellow neurosurgeon meeting with us after midnight, after the MRI, to tell us our daughter had at least three lesions (code for cancer) and needed brain surgery immediately. We didn't have a choice. We gave consent to complete strangers to open up our daughter's head. I remember he downplayed cancer, making us think if Naya had cancer, it was easy to treat. I'm not kidding. Another foolish statement.
The next day was a blur. I didn't sleep all night. I had terrible dreams in the PICU, and the nurse told me to just stay awake. She knew the types of dreams I was having; she probably experienced many parents staying up throughout the night hoping their child would be okay. Hank went home to get Zak. I remember desperately needing him with me and being so scared without him at my side. The minutes were so slow. It took forever for hours to go by and for Hank to come back. Somehow, my brother showed up for the surgery, but I don't even remember how he found out to this day. I can't remember where my mom was that day. Maybe watching Zak? No idea.
The surgery went well, and treatment began. The next three years came and went. You know our story. Hope, love, fear, hate, anger, joy, happiness, courage, despair, gratitude, deep love and pure, unimaginable sorrow.
Today, three years later, Hank and I found ourselves in Philadelphia, on CHOP's campus. It's always a surreal experience when I go back to CHOP. But, I keep going back. Why? Because I want childhood cancer to be cured! I'm sick of it, and I'm sick of kids dying. And, the only people that will change it are people who have suffered and selfless docs like the people I saw today.
We met with two incredible doctors today who have dedicated their lives to curing childhood cancer. We spent a couple of hours talking about grants, funding, precision medicine, clinical trials, Cancer Moonshot.
The best thing about today were the people that support us to help move the needle on pediatric cancer treatment and cures. People who are selfless, kind, giving of their time and truly amazing. Our new philanthropic advisor Alexis; my dear friends Paige, Lauren and Laurie who gave an hour of their busy day to move the Foundation forward; Dr. Peter Adamson (chair of the Children's Oncology Group) who gave over an hour of his precious time to advise us on how to achieve our goals and Dr. Adam Resnick who is so dedicated to accelerating cancer research that he met with us after a redeye and a meeting with Cancer Moonshot representatives (including Senator McCain). My other favorite doctor, Dr. Michael Fisher, wasn't there, but was is always behind our effort.
I realized today that Naya is our motivation, and those docs and our friends are our hope. I am the luckiest person alive and continue to be blessed by true heroes. My daughter, my father, my friends and the people who pursue giving children the lives they deserve. I can be sad, lucky, inspired and heartbroken at the same time.
I wish Naya was here to witness the people who give their lives to helping children. She would be pretty choked up. I can see her tearing up. She understood how much people loved her. I will always hate this anniversary, but I don't hate today. Today was a good day.