AIDEN’S JOURNEY – HOW THEY GOT HERE
Aiden Victor Paul Fotherby-Verk is a 10-year-old boy who lives up to his name, which means Fiery Conquerer! At age 6, I took Aiden to the Children’s Hospital of Eastern Ontario (CHEO) as he was having constant headaches, vomiting, wobbliness and sleeping throughout the day. This was not “viral fatigue” as their family doctor had told us more than once. An MRI showed a very large tumour in the back of Aiden’s brain. I was told it must be removed immediately or Aiden’s life was at risk. After a 15-hour surgery, which left Aiden in a vegetative state unable to walk, talk or swallow, the tumour was biopsied and it was indeed Brain Cancer, Medulloblastoma.
Aiden and I immediately traveled to Boston for radiation and extensive rehabilitation. We then traveled to Sick Kids in Toronto for chemotherapy. I had no choice but to leave Aiden’s two brothers, Declan, age 4, and Lynkon, just 1 at the time to switch between various family members and their dad for care while we were away for that year. It was completely devastating, I felt that I was losing all my sons, but knew I needed to be with Aiden. Aiden worked really hard to learn to walk, talk and eat again. Aiden’s dad came to Toronto to help for the last couple of weeks of Aiden’s rehabilitation. We were both stressed out, even before Aiden’s diagnosis, we had had problems. Under the increased strain, our marriage faltered and I made the decision to separate.
I became a single mom of three young boys. But things were looking better for Aiden. In July 2017, I returned to work. Aiden’s hair started to grow back, he returned to school, and his appetite was returning although the lingering chemo effects made eating difficult. Except for the daily bouts of vomiting it was almost like a normal life again. Unfortunately, this was short-lived.
In September 2017, almost a year to the exact date of his initial visit to CHEO, I rushed Aiden back to the hospital – he had a shunt blockage and needed immediate life-saving surgery. After a week as an inpatient, Aiden recovered and returned home with smiles.
At his six-month post-treatment scan, it was determined that Aiden’s cancer was back. In December 2017, only a week before Christmas, We were told to transfer care back from Sick Kids to our home hospital (CHEO) to be close to home for whatever time they may have left, with an estimate of 3-5 months. I refused to give up and pleaded with Aiden’s oncologist to try something, anything. Aiden was put on two oral Chemotherapies that could be administered at home and would likely not affect his quality of life.
By March 2018, Aiden was so ill I was taking more and more time off to go to appointments. Declan was getting suspended from school on a regular basis from all the stress and disruption at home. Aiden was just generally ill and unable to go to school more than a couple hours at a time, if at all. I took a second leave from work thinking Aiden only had a short time left. In April 2018, we were gifted a trip to Florida and Aiden saw the ocean for the first time. The sunshine and the beach did him good and then in May, to everyone’s surprise, Aiden’s scans showed the chemo was working and the cancer was decreasing! Aiden got to go to his very first concert, Pink, sing in his school’s talent show, eat s’mores and enjoy summer at the family trailer and so much more. I just tried to create as many fun adventures and memories as I could for my boys, but most importantly, I wanted to show my kids that “there is so much more to life than cancer, and life is beautiful and meant to be loved and lived!”
In September, AGAIN, I rushed Aiden back to CHEO – he had a shunt blockage for a second time and needed immediate life-saving surgery. It took three head surgeries to fix the issue and more than a week of inpatient care, but Aiden recovered and returned home with smiles. I never left his side.
Last year had been good – Aiden was still 90% G-tube fed with bouts of nausea and hair loss, but he returned part time to school and was still smiling his charming smile and making people laugh with his shocking humour. Overall Aiden was doing well. He was happy and able to be a kid. I found a very supportive partner who has three girls of his own and we became a great crazy blended family of six kids!
Then sadly, again in March 2019, the scans showed Aiden’s cancer was returning. Again, we were told to take him off chemotherapy as there was nothing more that could be done. Again, I refused to give up and hit the internet finding the drug protocol Sick Kids calls Memat. I constantly asked about St. Jude trials knowing this may be Aiden’s only hope. In April 2019, we were told the SJDAWN trial was full. After reviewing a couple of options that would have been too invasive and would have disturbed Aiden’s quality of life, it was decided to try to the protocol I had suggested. It was an oral Chemo that could be administered at home. It was a combination of five drugs that alternated every 21 days. The side effects were not too bad and the scans from May and June seemed to be showing stability.
In June, Aiden had a seizure for the first time. My boyfriend and I were quick to react and rushed Aiden to the hospital. A palliative care team met with Aiden’s Dad and I to discuss end of life procedures and extraordinary measures which I said I could not allow – I could not imagine them pounding on Aidens chest in his last minutes after everything he had already been through. “If he is to go now, I just want him to be in peace.” Heartbroken, I did not leave Aiden’s bedside all night, praying constantly over him. To everyone’s shock Aiden woke up on Father Day 2019 with a huge smile!
Then July, the oncologist again said the chemo was not working and to take him off and prepare for end of life. This time we did. I prepared for the worst, even visiting a funeral home to start arrangements. Our oncologist suggested we meet with a radiologist in hopes that radiation could buy Aiden a couple more months. We had bought more time than ever thought possible but I felt utterly broken at this point. The news was hard but I knew this was coming. Knowing the long-term effects of radiation would be devastating, but also knowing Aiden did not have a long life, we permitted Aiden to undergo a radiation MRI that week. The oncologist called me the same day to say “PUT AIDEN BACK ON CHEMO, IT IS WORKING!” I was shocked but overjoyed! Once again, Aiden amazed his family, friends and medical professionals! Unfortinatly, it took four weeks for the hospital to arrange for Aiden to go back on his chemo protocol. The stress this caused me was unbelievable, but I remained positive. Thinking Aiden would not make it to Christmas, I arranged an RV trip to Santa’s Village to allow our blended family to have a Christmas together. We continued with our summer plans and Aiden was very happy to be playing outside again and able to be a kid.
Christmas 2019 came with lots of smiles and cherished moments but during the holidays Aiden started to get more tired. Scared, I rushed him to CHEO again where a CT scan showed the tiredness was not the result of a shunt blockage this time but the cancer itself. Aiden and I went to Roger Neilson House for palliative care. I was told the end was near, but the doctors would try a steroid that might bring Aiden back for a bit, but it was up to Aiden at this point. I did not leave Aiden’s bedside over the next couple of days and prayed constantly. Sure enough, the steroid worked and Aiden was able to go home New Year’s Eve and enjoyed the rest of the Christmas holidays playing with his family.
Aiden had an MRI January 6, 2020, and the results where devastating. There was substantial growth in three major areas and other small spots through his brain. We were told to take Aiden off chemo again, but this time my whole body told me NO! I took Aiden back that Friday to see the team. They all agreed that he looked better than they had seen him in MONTHS! He was eating and had gained 10 lbs. He was not napping during the day, not throwing up, and was sweet, comical, and in good spirits. How could this boy be dying? I knew Aiden’s tumour had been sent to St Jude’s the month before and they were still testing it. I pleaded that CHEO follow up with the St. Jude’s trial and I told the doctors and Aiden’s dad to keep Aiden on chemotherapy for one more month until they could have another scan in February. I was hoping against hope that the St. Jude’s trial would come through. That Wednesday, January 26th I received the call… Aiden’s tumour passed the genetic testing process and Aiden was eligible for what I was told was a curative trial at St Jude’s, the world’s best children’s research hospital!
It took two weeks because of communication issues with our home hospital. Finally, I myself reached out to St. Jude’s and was amazed when the person on the other end of the phone greeted me with, “We are so glad you called! We have been trying to get a hold of you! Can you and Aiden come to Tennessee tomorrow to start?” YES! Within 24 hours, myself, Aiden and his brother Declan were on a plane to Memphis. I knew she could not leave Declan for a second time, so I took out a second mortgage on my house to pay off some of my credit card debt so I could take Declan with us and help with expenses. Hope was restored!
The hospital was amazing. Everything that usually had to wait months for was set up immediately; my St. Jude’s online calendar was populated with consults with nutrition, physio, occupational therapy, the chaplain, child life and music therapy. My only regret was that we did not get to go here sooner. The next day, Aiden and I met the fellow working on the study and all of my hope was replaced with devastation.
No one had told us that Aiden had to be off chemo prior to starting the trial. Aiden would have to be off chemo for an additional three weeks. The concern is that his cancer may grow and he may die in those three weeks. I was told we could stay here for three weeks and wait it out or go home and then come back if Aiden was still well enough. I was told that sometimes it can be difficult to get back home for end of life. The doctor said she would cancel Aiden’s MRI for the next day as they would need to redo it to start the trial. I was in shock and confused but asked if they could keep the MRI to give me a better idea of how large the tumour is right now, and if he had enough time to wait for the trial. The doctor agreed that this was the best option and also made an appointment the next day for me to talk to the head of trial. The second devastating news was that this was not a curative trial as they had been told. This was only maintenance, but the treatment protocol had showed very positive results in stopping growth for up to two years with little side effects.
Aiden had his MRI the next day. The doctor was surprised and asked me what we had been doing differently – the MRI actually showed a small decrease in his tumour! I said I had kept him on his chemo Tremazol and Accutane constantly for the last month and prayed hard every single day and all day long. Again, Aiden shocked his family and medical professionals!
This left me with the choice to go home and continue on the same protocol (the one they had been told twice was not working) and then we could come back to Tennessee in three weeks or decide to remain home. I could not imagine going back home for the three weeks – Aiden hates winter, all I see is the cold and Aiden lying in my bed with his iPad to essentially die. The second option was to stay in the USA and wait. The tumour had shrunk a small amount which was very positive but there was still a lot of disease. I told the doctor I have always held Aiden’s quality of life as priority number one, and was worried about the harshness of the trial. The doctor assured me he would let me know when to stop but, looking at Aiden right then, he thought the trial was a very feasible option.
As I tend to make the best of the worst situation, I immediately asked the doctors if I could drive the boys to Florida for the next week and half while we waited. My dad, step-mom, and aunt and uncle were all in Florida for the next bit and I had already paid for Declans flight down and I was worried I would not be able to afford for him to come back with us again. I thought WORST CASE, we go to Florida, Aiden gets worse and we go home for end of life. BEST CASE, we go to Florida and come back and he gets amazing care and a hope that this may work to give us enough good time to find a cure. Either way, we get a week and a half of amazing memories, and Declan and Aiden can play and run around in the sun and warmth.” So on Monday February 10th, I called Avis and rented a car and drove the 12 hours to Florida. It was one of the best decision I had ever made! One week later we drove from back to Memphis and now we are right back at it again just one day at a time with lots of prayers and hope that this is were we are suppose to be right now…..
I started this blog for a couple reasons, to keep my sanity, to document the journey, to bring awareness to Childhood Cancer and most important to give insight, hope, inspiration and support to other parents, family and friends whose children have been diagnosed with cancer or other serious childhood illnesses. After Aiden was diagnosed I tried to reach out and find others in similar situations as me, trying to find resources to help me understand. I searched for confirmation that I was doing the right things, or that what I am going through really does happen to others. I found it difficult finding this information and finding accounts from actual people going through the same situation, not just the text book medical mumble they give to you on diagnosis day; I wanted the share the real raw journey.
About Childhood Cancer
Childhood cancer is relatively uncommon. However, it remains the most common disease-related cause of death – more than asthma, diabetes, cystic fibrosis and AIDS combined. It is second only to injury-related deaths among Canadian children.
Cancer in children creates a large impact on our health, economic and social welfare systems. It also places a burden on the child with cancer and their family. An estimated two-thirds of childhood cancer survivors will have at least one chronic or long-term side effect from their cancer treatment. As more children survive cancer, the need for long-term monitoring and follow-up care will continue to grow.
The 3 types of cancer that account for the majority of new cancer cases in children 0–14 years of age in Canada are:
- leukemia – 32%
- brain and central nervous system – 19%
- lymphomas – 11%
The 3 types of cancer that account for the majority of cancer death in children 0–14 years of age in Canada are:
- brain and central nervous system – 34%
- leukemia – 26%
- neuroblastoma and other peripheral nervous cell tumours – 11%