Dorisa Nachla's Fundraising Page

Alex's Story

My son, Alex was 9 years old in November, 2020, at the height of Covid, when he was diagnosed with Leukemia.  

Alex had a really bad nosebleed mid-November of 2020. It lasted for almost 2 hours. I was concerned, but I didn’t take Alex to the hospital because I thought it would be crazy to take Alex to the hospital for a nosebleed at the peak of Covid. .Alex was tired and had low energy for the next couple of weeks.  I tested him for Covid and he always tested negative. I had no idea that a nosebleed could mean cancer.  

On Friday November 27, 2020, I noticed Alex was pale and he still didn’t feel well. He went to bed at 7 pm, which was very early for Alex. On Saturday November 28, 2020 at about 5 am, Alex woke me up. He had another nosebleed. This time it was profuse and just wouldn’t stop. There was so much blood. Alex was vomiting blood. I called several walk-in clinics, and found one that would see us in person. The nosebleed stopped for a bit, and I put Alex in a bath to clean him up. That’s when I saw that he had bruises and red spots all over his body. I called the walk-in clinic. I was told to go to the ER immediately. The nosebleed started again. I had asked my mother to come over and stay with my older daughter, Olivia, so I could take Alex to the walk-in-clinic. While we were waiting for my mother to arrive, my good friend called to tell me that her father, who had Covid, had just passed away. I told her I couldn’t speak, I was on my way to the hospital with Alex. Up until that day, the worst day we had ever had was the day my daughter was diagnosed with Type 1 Diabetes 5 years earlier. That was a life changing diagnosis, and I already had a feeling that this would be worse.

When my mother arrived, I asked her to drive us to the ER. The nosebleed was so bad that I had to sit in the backseat with rolls of toilet paper because we had gone through 5 boxes of tissues that morning. At triage, we didn’t have to wait, they took us straight in. They did all sorts of tests and asked a lot of questions. It’s all a blur, but I think Alex had his first blood transfusion at Oakville Trafalgar Hospital. The nurse explained to him that someone donated blood and it was the same blood type as his. It would help him feel better. Alex said he wanted to thank the person who donated blood.

After a few hours, we were sent by ambulance to McMaster Children’s Hospital, where Alex was admitted and where Alex and I lived in isolation until March of 2021. We didn’t hear the word “Leukemia” until the 5^th day after Alex had  been admitted. One of the heads of Oncology came in to speak with me. I told him I really need to know what’s going on with Alex. So far, all I know is that it has something to do with his blood. Is it ATP (a platelet disorder)?  The doctor seemed really cautious and tentative. He said there’s a 99% chance it’s not ATP. We are hoping it’s leukemia. That shocked me. How could we be hoping for leukemia. Dr. Gibson explained that with Olivia having Type 1 Diabetes, an autoimmune disease, there’s a great likelihood that Alex may have some autoimmune disease, in which case, they don’t really know what it is or how to treat it. Whereas, if Alex has Leukemia, they have treatment protocols. So now, I was praying for Leukemia.

My daughter, Olivia, who was 12, was moving between living with her grandparents, my 77 year old parents, and her father’s house. My partner, her stepdad, Miki, came to the hospital every day to pick things up and drop things off, and when he was allowed, he spent time with Alex and me. He often would pick Olivia up from wherever she was and bring her to the hospital every couple of days, so we could spend half an hour or an hour together. Understandably, she was a jumble of emotions. Covid was bad enough, now life was complete chaos. We were all just sort of bewildered.  It calmed Alex when I read to him, and so I read to him for hours, day and night.

During Alex’s first lumbar puncture, which we were assured was a routine 15 minute routine procedure, the first of many, Alex flatlined and was revived. He had bled into his lungs during the procedure and the doctor didn’t notice until his heart rate dropped. He was in a coma and on a ventilator in the ICU for about a week. The ICU nurses were so respectful. They spoke to Alex and bathed him gently even though he was unconscious. They manually drained the blood from his lungs periodically. They encouraged me to speak to him, and I did. I cried and prayed, stroked his hair, kissed his face, and spoke to him, telling him everything will be okay. When he awoke, he panicked. He had a tube down his throat and couldn’t speak. His blood pressure soared. He was put in an induced coma and they brought him out of it every day until he was able to wake up calmly. Alex woke up limp and immobile. He needed physiotherapy to relearn how to use his muscles.  A few weeks later, Alex had blood in his stool. He had a lesion in his intestines, but they didn’t know where. Alex underwent an 8 hour surgery where the gastroenterologist, Dr. Sherlock, who is also my daughter’s doctor (my daughter also has Celiac, and she’s visually impaired).  Dr. Sherlock said she removed the entire small intestine and examined centimeter by centimeter and put it back into Alex’s body. She decided not to cut a piece of Alex’s small intestine. Had she done so, Alex would have to have a colostomy bag. Dr. Sherlock said she believed the legion was small enough to heal itself. Thank God, it did. After that surgery, Alex was induced into another coma in the ICU for almost a week to recover. They inserted a Port IV in Alex’s chest after that. It became infected. Alex had a wound about 2 inches deep and wide that had to be healed with the help of a wound specialist for about 2 months. It was a tough almost 3 year treatment plan with many complications along the way. It felt like a surreal nightmare that we just couldn’t wake up from.

I spent most weekends growing up at my aunt’s home. My cousin, Mirvet, feels more like an older sister to me than a cousin. She’s 10 years older than I am. I was 19 and she was 29 when she was diagnosed with stage 4 uterine cancer. I had never even thought of cancer before that. She has been cancer free now for over 30 years! When Alex was diagnosed, it gave me immense hope that if my cousin survived cancer 30 years ago, surely Alex will make it through this to the other side. I also received encouragement from my oldest and dearest friend, Laura, who survived very aggressive breast cancer 10 years ago.

Covid definitely made things more challenging. There was a feeling of isolation. We didn’t know what any of the doctors, nurses or child life specialists looked like. We only saw their eyes. Now when we go to McMaster Children’s Hospital, we finally get to be properly introduced to people we’ve known by voice only for 3 years. The Ronald McDonald House room is open now, but it wasn’t for Alex’s entire 3 years of treatment. The positive thing about Covid is that all kids were in virtual school. People were masked and Alex had that extra protection during most of the time that he was immunocompromised. Alex was sad to be in hospital over the holidays when he was first diagnosed. I consoled him by telling him that he’s really not missing anything – because of Covid the holidays were different for everyone, not just us.  Alex and I did get Covid in April of 2021. He was at McMaster Children’s Hospital and I was at Oakville Trafalgar Hospital for 3 weeks. It was most difficult being away from him for that long. I called the ward every day to ask about him and speak with him.  I insisted on getting discharged when he was discharged. I was the first patient at Oakville Trafalgar Hospital to be discharged with an oxygen tank. All in all, this journey has brought us much closer than we already were as a family.

In the spring of 2021,  I was connected with Laura Pasqualino at Wellspring for one-on-one virtual counselling as Alex’s primary caregiver. In 2022, I started participating in the Parents of Children with Cancer support group, led by Laura Pasqualino. In the summer of 2022, we received an invitation from Wellspring (at Sixth Line in Oakville) to attend a summer BBQ for families of children with cancer. Alex, myself and my daughter, Olivia, have attended a few family events at the Sixth Line location of Wellspring.

Whatever normal was “B.C.” (before cancer) doesn’t exist anymore. We’re still working on finding our new normal. Alex has been off treatment since June of 2023. Currently, we go to McMaster Children’s Hospital every 2 months. Alex is finally able to attend school every day. He’s in grade 7, but he has missed grades 4, 5 and most of grade 6. He is very behind academically. He’s matured a lot personally. That makes it hard for him socially with the other kids in his grade. Alex got really good at video games during his 3 year treatment. He joined the E-Sports Team and placed 4^th at the E-Sports Tournament Finals. He’s made a few friends. He has a Child and Youth Counsellor and an Education Assistance Plan at school, and he is participating in programs at ROCK (Reach Out Centre for Kids).

I couldn’t be more grateful that Alex is alive and off treatment. Alex, on the other hand, still often feels really overwhelmed. Alex has been traumatized by his cancer journey. He has developed OCD. Alex feels if he can keep things as clean and germ-free as possible, he won’t get sick again. He is working through depression and anxiety. He has a lot of support from his school and ROCK and his family. Alex is strong and resilient, but also really sensitive. I have faith that all of this has contributed to the wonderful person he is.