Thursday, May 8, 2025

Thursday, May 8, 2025

Tonight's picture was taken in May of 2003. Mattie was a year old and that day I took him to the Reston Zoo. This was probably his very first trip! As you can see by the big smile on his face..... he loved it! Mattie gravitated to animals and nature. In the pen in front of Mattie were goats! One goat came right up to the fence line to greet Mattie. Which was what triggered Mattie's excitement. I can't tell you how many times we visited this Zoo, and every visit was a big hit! All I know is life with Mattie was never boring! He had a joy for life and his energy was contagious. 

Quote of the day: Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go. ~ Jamie Anderson

Today, I recalled a moment in time. I do not always have these opportunities because for the most part, people who I see everyday now do not know me as a mom. They aren't aware of Mattie's existence or the horrors I have endured. But while talking to a friend today, who does know these horrors, I shared this story...............

In September of 2008, we took Mattie to New York City to consult with a renowned doctor specializing in bone cancer. We wanted a second opinion and to confirm that Mattie's plan of care offered to us in Washington, DC was the right one. Of course NOW I KNOW..... medical care for cancer is standardized. So in essence Mattie would have been offered the same protocols anywhere in the USA. Naturally these protocols can be slightly tweaked, but they are basically all using the same chemotherapies. 

Any case, I will never forget this September day. My parents and Karen (my life time friend) were with us. We waited for FOUR HOURS to see this particular doctor. As you can imagine, with each minute passing by, I was getting more aggravated and stressed out in the waiting room. After all, we had Mattie with us and his desire to stay confined to this waiting room for hours on end was challenging at best! 

After four hours of waiting, we were brought back to the doctor's office. One of his staff members came flying into the room and she told us, that the doctor could only meet with us for five minutes, because he was giving a keynote speech at a gala across town. The fact that I did not snap that woman's head off is a remarkable! Here I was a traumatized mom looking for help and guidance, with her son in tow, and all they were worried about was the doctor's keynote speech. 

When the doctor graced us with his presence, there was no apology for waiting for hours. Instead, he looked at us and basically said he did not know why we were consulting with him. He proceeded to explain that he did not know one child with multiple primary bone tumors who had ever survived. Before he said ONE MORE WORD, I put my hand up to stop him from talking. I told him that we were NOT having this conversation in front of Mattie, a six year old! You think he would have known better!!! So I escorted Mattie back to the waiting room and he waited with my parents and Karen. I went back into the doctor's office and he did not skip a beat. He continued. He told us we should not even elect to start treatment, but instead, enjoy whatever time we had left with Mattie and move directly into palliative and end of life care. Basically that there was NO HOPE!

This nightmare conversation happened 17 years ago, and I can remember it like it was yesterday. This doctor maybe considered a guru in his field, but his ability to empathize and relate to his patients and family was inhumane. He instilled no hope, and when I left that room, I felt like I wasn't going to make it, that I too was dying. Yet I had a six year old that needed me and I had to pull it together mentally to be strong and resilient for him. Naturally that day I wrote about this nightmare of a visit on Mattie's blog. Our care team in Washington, DC were daily blog readers and therefore read my words and understood immediately how devastated I felt. 

While driving from New York City back to Washington, DC I got a phone call in the car. I picked up the phone and it was Catherine Silver, our case manager at our Washington, DC hospital. She wanted me to know that she and the team knew our trip to NY was very difficult, and then she said..... YOUR GEORGETOWN family is awaiting your return, we are here for you, and we are ready to start treatment. Catherine's words were exactly what I needed to hear at that moment in time. It was like she was performing CPR..... she breathed life right back into my head, heart, and body. Yes words are powerful and they gave me the strength to carry on and to have confidence to proceed forward. WE ARE HERE FOR YOU, is equivalent to my other favorite line.... YOU ARE NOT ALONE. 

Ultimately was the NY doctor correct? Yes, medically he was correct. Mattie died, but psychosocially he was all screwed up! Why? Because, if I had proceeded with palliative and end of life care without fighting and trying every possible avenue to beat back Mattie's cancer, then I know I would have lived with a lifetime of regret. I would have felt guilt and disgust with myself that I did not give 100% to try to regain Mattie's health. That guilt would have weighed on me for the rest of my life and unfortunately this doctor did not think passed the data he saw on paper. He couldn't understand that such decisions have long term psychological consequences on an entire family. 

That visit to New York remains with me always! It reminds me that in all of our interactions, we have a CHOICE! We can build others up and give them hope, or we can quickly destroy them and impact their will to live.