Benny was 22 months old when he was diagnosed with ATRT. He became ill with flu-like symptoms- fever for a couple of days and then followed by cough for a few more days. Not one of us ever thought that it was more serious than that, certainly never a brain tumour. When he looked like he was recovering, playing and laughing out loud again, we noticed that he started sleeping more and vomited after meals. He was under 2 years old and didn't really know how to communicate in words what he was feeling. Then when I noticed that his left side was not responsive (he wouldn't raise his left arm when changing his shirt or stand up with both feet on the ground), I called our family doctor. I had just brought Benny to our doctor the day before and he confirmed to me then that there was nothing unusual about his bloodwork. Our doctor then advised me on the phone that I can take him to emergency if I'm really concerned about it.
At the emergency, we were surrounded by resident doctors and nurses who couldn't explain to us what was wrong with our son. There was a suggestion that he may have accidentally ingested medications, or that he fell and hit his head- it was no to all. Finally, a paediatrician came to see Benny and after one look at him she ordered an MRI immediately, not a CT scan as what the other doctors had ordered.
Before the scan was completed, the doctor came out to speak to me and my husband. That is when she told us that they found a mass in his brain and that it did not look good. I recall hearing the words that came out of her mouth but didn't fully comprehend what those words meant. The next thing she said is that we will be transported immediately after the MRI to SickKids Hospital.
I remember thinking to myself as my baby underwent resection at SickKids, whether people, meaning fully grown adults, actually survive brain surgeries. It was excruciating 9 hours of waiting and wondering whether my barely 2 year old baby would come out of this frightening major procedure alive. Our neurosurgeon was pleased that it was almost a full resection. The tumour had caused him to have a stroke and left him weak on the left side. Benny, who had just learned to walk 10 months ago, would now have to learn how to walk again. The neurosurgeon explained that he would require rehabilitation after his chemotherapy.
After 2 weeks of recovery from surgery, Benny started a regimen presented to us by SickKids neuro-oncology team. The treatment plan consisted of 6 cycles of chemotherapy; the first 3 cycles (induction) would be administered with 4 different types of chemo medications, while the latter 3 cycles (or consolidation) would be with 2 high dose chemotherapy followed by autologous stem cell rescue.
The months and months that followed were not easy, especially for a 2 year old boy who should have been laughing, running around, dancing, and playing with his big sister at home. Each day presented new fears and challenges-will he get mucositis, how much more did his counts drop, what caused his fever, will he have appetite for the day, will he get another allergic reaction to the chemo, and so on. It was a completely different world that our family had to survive in.
Nonetheless, my baby remained strong, goofy and full of energy when his counts started to climb, knew how to flirt with some of the nurses, and even reached the blue code button one time. He quickly learned the daily routines of checking vitals that he’d grab the stethoscope himself and place it on his chest, he’d raise his right arm to place the thermometer in his armpit, and then he’d bring out his right index finger to check his O2. It was both amusing and heartbreaking to watch him adjust to the hospital life day after day in his little white gown.
Benny completed his treatment of high dose chemo and he was on third month of maintenance chemo when ATRT came back. We enrolled him right away on a clinical trial suggested by our neuro-oncology team- it was called pembrolizumab immunotherapy. The treatment sounded promising, however, the tumour, being as aggressive as it was, left us very concerned that our Benny would not make it long enough to start the clinical trial. He was declining very quickly day after day and at one point, we were told that he had one week. It was a very difficult decision but when we were presented with an option of palliative radiation that would give us a little more time with him, we went for it. We were advised that ATRT responds well to radiation, but our team did not recommend radiation on Benny being under 3 years of age. We were so afraid to lose him that we decided to go with radiation.
The radiation was successful at first in shrinking some of the tumours and giving Benny a little bit of his energy back. We made the most out of the months that followed when we were able to take Benny home again. Because of Make a Wish Foundation, Benny was able to go to Disney World for his 3rd birthday and meet Mickey Mouse.
Benny loved many things in his short life. He loved Mickey Mouse the most; he wore Mickey Mouse t-shirts every day and if they were all soiled, I had to launder them all right away. Asking a 2 year old boy to stay still as nurses do procedures on him such as inserting an NG tube, changing his CVL dressing, ultrasound, etc. is asking for too much. The only thing that helped with that was putting on the Mickey Mouse shows.
Next to Mickey Mouse, Benny adored his big sister, Alex. She could brighten his day no matter how much the chemo drained all the energy he had. At 8 years old, all she had looked forward to was the day when she could walk her little brother to his class on his first day of school. The day that I had to tell her that Benny will never be able to go to school with her is one of the many most heartbreaking parts of this journey.
One month after Benny turned 3, he took his last breath at home in my arms surrounded by family and closest friends.
Today, Benny should be 7 years old. I should be hearing him for days and weeks leading to his birthday all the things he’d want for his birthday. Instead, I visit his grave (just as I do every day) and organize an activity to honour him, his strength and his bravery that left me feeling proud that I am his mimi.