Three years ago today, my life fell apart in the dim light of a hospital room at 12:30a.m. With cartoons playing on an old TV attached to the ceiling, Mishi snuggled into the hospital bed, cradling Stella in her arms, I was curled up on the hard bench attached to the wall, slowly drifting into the state you reach seconds before you fall asleep. Then it all stopped. The door swung open, a sliver of light filled the room and a team of doctors in scrubs lined up along the wall. As the lights came on, one of them started to speak. To this day, the only words that came out of “Dr. Doom’s” mouth that I remember are “mass”, “brain”, “oncology”. I remember Mishi lurching forward, looking at me in hopeless desperation and saying “Aim – NO NO NO!” I was frozen, unable to move, just watching it happen. One of the residents had to help me move across the room to be at Mishi and Stella’s side. Stella knew something was wrong right away and started to squirm to look at Mishi. Mishi’s eyes rolled back in her head and she fainted – out cold. Our world was exploding and we were being crushed under it’ weight.
There we were, alone – losing everything we had. Earlier that night, we had sent our family home because we were told that we would not receive the MRI results until the morning. As four doctors worked on Mishi who was still unconscious, I was franticly trying to clutch Stella in my arms as she screamed for her mama – “I want my mama! What’s wrong with mama?!” As she hit and kicked me, I managed to get my cell phone out of my pocket. I needed my parents and I needed my sister. They came. They came right away – and they never left.
Although the excruciating moments that unfolded over the next four days and the weeks to come will never be gone from my memory, I won’t recant them any further on this page. Mishi has since been diagnosed with PTSD from the experience of Stella’s diagnosis and I won’t drag her back through it on this blog that is so sacred to her. She won’t be reading this post as I’ve warned her not to. It’s just too hard.
From the very beginning, my defense mechanism has been a form of denial that only allowed me to take in minimal information at a time. When Stella was diagnosed, I was the only one in my family who didn’t Google DIPG. I was afraid to. Just knowing that my daughter was going to die from an inoperable brain tumour wrapped around her brain stem was enough information that my mind, heart and soul could handle. Lately however, three years later, I’ve found myself wanting and needing to know more. Mishi and I made the decision early on to donate Stella’s tumour. Two weeks after her diagnosis, after we watched our daughter be wheeled out of the doors of the pre-op room on her way to the O.R., where they would biopsy her tumour, there was a nice, quiet man hovering by the door way. I knew why he was there and as we walked out I said to him “are you waiting for us”. He said “yes” in a meek, nervous voice and as he clutched onto his clipboard we put him out of his misery. We asked him if he wanted to know if we would donate Stella’s tumour and he said yes. He handed us a package that was an inch thick and I can tell you right now, neither one of us read a word of it. We just asked him where we needed to sign and that was it. The details of what we had just signed to were not important to us.
After Stella died, people kept asking us when/if we were going to find out what they learned from the donation of her tumour. I wasn’t ready. As little information as possible – that is how I had been coping. For the past few months however, I’ve been haunted by the feeling of not knowing and I realized that I needed to know what the tumour looked like, how big it was or whether it looked different because it was never treated with chemo or radiation. I found myself wanting to know why Stella was an “outlier” from the beginning. I needed to know it all. They cut into my baby after all – I deserved to know. So after reading about Stella’s pathologist, Dr. Cynthia Hawkins, who just received a million dollar grant for her groundbreaking research and recent DIPG discovery – I made an appointment.
Two weeks ago, my mom, sister and I walked through the doors of SickKids hospital once again. Immediately, my stomach was in knots as we rode the glass elevator up to the 8th floor. “The 8th floor” – a term that three years ago meant something different to me. As a long time employee of Camp Oochigeas, “the 8th floor” is a term that I am all to familiar with as it’s mentioned multiple times a day. It’s where the magic happens. Where kids with cancer get to participate in camp programs led by my incredible co-workers who are so good at making kids smile. Now, “the 8th floor” is where I was going to hear the results of my firstborn child’s autopsy.
As we sat in the same room that we did three years ago, when they delivered the news that the biopsy results confirmed that Stella did indeed have DIPG, I could feel myself going into “robot mode” for survival. Stella’s Oncologist, Dr. Bartels and her pathologist, Dr. Hawkins were very gracious and spent an hour with us. They answered all of the questions we had and they let us look at the scans from Stella’s MRI. Yes, it’s true – that was the very first time that I laid eyes on her scans. Survival. In the days leading up to this meeting, I had prepared myself for the moment that we looked at scans of her brain. I am still triggered by any images of the brain. I was prepared to see the tumour. I was prepared to feel sick and sad. What I was not prepared for was the impact of seeing the outline of her face on the scan. There she was, my beautiful little girl, with her turned up nose, defined chin like her Poppa, and her perfectly round head. I wasn’t looking at a brain – I was looking at my Stella. I swallowed hard, blinked the tears from my eyes and tried to suppress the overwhelming sick and sad feeling that was washing over me. My sister snapped a photo of the scans and I later sent them to Stella’s Auntie Ray who says that the tumour looks like a monster. She is right. It does. It was.
After peppering the doctors with questions, we learned that as it turns out, not only is Stella’s tumour being used in the DIPG research – her little brain is changing lives.
It is playing a significant role in the groundbreaking research that Dr. Hawkins is currently doing. Dr. Hawkins has discovered that there are 3 sub-groups of DIPG. Stella fell into one of those sub-groups. Through recent learnings, they have been able to determine that there are certain types of DIPG tumours that will never respond to radiation. This will allow doctors to tailor treatments to each child based on the type of DIPG tumour they have. In laymans terms – kids with tumours that will not respond to treatment will potentially not be radiated at all. Stella’s tumour is constantly being referenced and compared with other cases. For many reasons, I find so much comfort in that.
So Stella – on this day, as my heart sits heavily in my chest, I want you to know that YOU are changing lives. YOU MATTER. I miss you every minute of every day and I’m so proud of the impact you’ve had on this world.
Mommy loves you big girl.