Thursday, January 25, 2024

Thursday, January 25, 2024

Tonight's picture was taken on August 4, 2009. I remember this moment in time like it were yesterday. I had a phone interview today, and the reporter asked me if I could recall the day I learned that Mattie's cancer became terminal. In essence when we moved away from a cure and to end of life care. Indeed I can, in fact it is a day I will never forget. After demanding scans, his doctors finally complied and Mattie had an ultrasound followed by a CT scan that day. A mother knows best! I did not buy the notion that Mattie was addicted to pain meds or that he developed an eating disorder. Excuses I heard to explain his symptoms! This did not fit Mattie's personality. Instead, I feared the worst and unfortunately I was correct. Mattie was in terrible pain and his cancer spread to all his organs. In any case, while awaiting the test results, Mattie and I went to sit in the hospital's garden area. By the garden was this art therapy elephant filled with motivational tiles. One tile was of Curious George, designed by one of Mattie's nurses, and was dedicated to Mattie. Mattie loved to visit this elephant and his tile. Can you believe that big smile when Mattie was suffering in so much pain?! Amazing. 

Quote of the day: Before you get a dog, you can’t quite imagine what living with one might be like; afterward, you can’t imagine living any other way. ~ Caroline Knapp

Tonight's quote is so true! Before we adopted Sunny, I truly was worried that I would not be able to handle a dog. I doubted my abilities! Especially living in the city without a backyard. However, Sunny was always grateful to have a loving home and truthfully we could have lived in a cardboard box, and he would have been happy. Sunny was the perfect name for my boy, because his disposition was SUNNY!

Sunny liked to keep an eye on me. When I was working upstairs in Mattie's bedroom, Sunny wanted to make sure I did not get passed him without him knowing it. What better way to track what was going on, on both the first and second floors! Sunny was over 60 pounds and yet found a way to park himself on a step! Notice as I was snapping this photo, Sunny looked up at me. He tracked my every move, and when we first adopted him this was an adjustment, but it was something I grew to love and appreciate. 

Today was a whirlwind. I dragged myself out of bed at 7:15am. I just couldn't get up. When my dad's physical therapist got to our home, I tried to make some phone calls for my mom regarding my dad's health savings account. When I tell you this call was painful, I am not kidding. I was on the phone for 2.5 hours! I am NOT exaggerating. I went from Via Benefits, Alight, then to AT&T Benefits, followed by Warner Media, and finally back to AT&T Benefits. By the time I spoke to my dad's employer, Warner's, I told the HR person.... don't you dare transfer me back to AT&T. So literally he kept me on the line while he contacted a supervisor at AT&T who is now investigating our issue. Truthfully I felt like I went ten rounds. I had wanted to go grocery shopping while my dad's PT was here, but that wasn't in the cards. Well not until 5pm, when I pushed myself to go grocery shopping, before making dinner. 

After that harrowing call, I jumped on a conference call with a reporter from the NY Times. She contacted me because she is interested in learning more about the Psychosocial Standards of Care, Mattie's story, why we created the Standards, and the importance of bereavement care. The reporter also lost a child to cancer, so she understands the lived cancer experience. We talked about a whole bunch of things and what I have to say is even though Mattie's journey was in 2008, I can recall so much of our journey, as if it were yesterday. 

She asked me how I learned that Mattie was dying. We both have a similar experience in the sense that no doctor addressed the issue point blank with us. On August 5, 2009, we did meet with Mattie's oncologist and she told us that there were no other treatment options for Mattie. She did not say he was dying per se, but she said that we were going to start Cyber Knife (radiation) to help reduce his pain. There was a task, a to do! Which was perfect, because when I was fighting hard for over a year, being proactive and doing something was key. But to this day, I will always remember what this physician told me and I shared it with the reporter today. 

The doctor spoke to us about HOPE. She said along a cancer journey, there is always hope. Hope evolves and changes throughout the journey. In fact at each of the different stages of care, we may have hoped for something different. But she went on to say that HOPE is needed and of utmost importance at end of life. Instead of hoping for a cure, we turned our active attention to hoping that Mattie would be in less pain, and that he would die in dignity. Again, this charged us with a to do, and in those last few weeks, I kept living in HOPE until Mattie's last breath. I was his fierce advocate and protector until the end, as he died in my arms, after a painful six hour death. Mattie was given a lethal dosage of propofol, to stop his heart. His bed looked like a mind field, filled with syringes and IV pain meds, and hearing the flat line on the monitor will remain forever in my mind and body. 

The reporter asked me about the connections we have with Mattie's care team after he died. I realize our situation is not like every bereaved parent's. But in our care, when Mattie died on a Tuesday, his oncologist literally wrote me an email every Tuesday for two years after Mattie died. I am NOT kidding. In addition, we are still connected with many of Mattie's nurses, his surgeons, his social worker and art therapist. In fact, many of these individuals are personal contributors to Mattie Miracle, even today. I can't tell you how much it means that these Mattie legacy keepers remain in our lives. I attribute this to the power of Mattie, to the amazing and intense connections we made with our care team, and the respect the team had for our undying love. When the article is published, I will share it here, but what I do know is the Psychosocial Standards of Care are historic! They were our brainchild and they will forever be Mattie's legacy.... Mattie's mark on the world to help other children with cancer and their families.