2016
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.
2017
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.
2018
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.
2019
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.
2020
Aiden had an MRI on January 6, 2020, and the results were 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 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 is 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 the 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 shown very positive results in stopping growth for up to two years with few 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 a 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 Declan’s 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 the 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 back to Memphis and right back at it again just one day at a time.
Aiden started the SJDawn Trial on February 19th. It was a tornado of appointments and blood draws and MRI’s to get ready. We met with Physiotherapy, Occupational Therapy, Music Therapy, Registered for Aiden to attend school, this was to be our life for the next 2 months we were making the best of it! On February 20th Aiden had surgery to put a port in. The port would be how the chemotherapy was delivered as well as make it a lot easier for blood draws as Aiden would not have to get poked every time. Although he was MUCH better there was still the occasional curse works to nurses whenever the needles came out. We went for walks and explored Memphis a bit, enjoying the sunshine and warmer weather then our family was getting back home in Almonte. March 4th we moved from the Tri-Delta, which was for short term patients to the Ronald McDonald House. We had stayed at the Ronald House in Ottawa, Toronto and Boston over the course of the four years and the kids were happy with the kid’s activities and games rooms it would offer, and I was happy for the more “Home-Like” feeling it would give us.
March 5th our day started at 6:30 am as we headed over to the hospital for Aiden’s first dose of Chemotherapy on the SJDawn Trial. It was a long day of monitoring and blood draws and ECGs and ECHOs finally leaving the hospital at 5:00 pm to get settled down for the night to get rested to do it all over again the next day. Emotions of hope and fear cycled through my entire body but we made it through the first week, now we had to wait and see. The weekend was spent in our room as Aiden slept most of the day between bouts of vomiting and stomach pains. Even feeling his worst Aidens still was Aiden to pull out some smile and jokes. This was a life we had grown to use too. I played video games with Declans and tried to teach him to read. Declan was amazing and would run over to the cafeteria to get food for us as I could not leave Aiden alone in the room feeling so unwell. We made it through the worst of the symptoms from the first round after a couple of days and I mentally prepared myself to get ready to do it again in 14 days. It also helped to know that Lynkon and Aiden’s Dad would be up soon to visit and then Jay and the girls for March Break. Aiden’s Dad and Lynkon arrived on March 7th and I was over joyed to hold my baby boy in my arms again and to just have all three brothers together again! Declan and Aiden were overjoyed to see their Dad as well.
Aiden was very happy to finally get to see #onward with his Dad. Honestly every time the commercial would come on for the last month (which was ALOT on the Disney channel here) Aiden would turn and excitedly hit me saying “that’s the movie Dad and I are going to see!!” It was so great to see all the boys so happy the afternoon we went to the movies. Not only have they had to adjust to Aiden being sick but also their parents splitting up. It is not easy for either of us but it really meant a lot to the boys that we were all able to put our difference aside and go to the movie together as a family again. It is hard and we are not perfect and screw up a lot but that day was about putting everything aside and focusing on what is actually important to our kids and helping them through this.
St.Judes was truly amazing, March 9th we all headed to the hospital and the boys were excited to show thier litle brother and Dad all around and of course where the gift shops were. Aiden even said “I’m really excited to be here!” I was like “what!? Like at the hospital?” He replied “Yeah I don’t know, I just feel excited.” NEVER in a millions years would I think Aiden would ever feel excited for a hospital. Unfortinaly that joy we felt did not last long, as the cycle with Childhood cancer. I swear as soon as you feel like you are able to breath again it knows as knocks the wind right out of you again.
March 10th Aiden went out with his Dad to Graceland (Aiden loved Elvis for some reason and would even exclaim out in class back home “Elvis is leaving the building!” when I would pick him up early from school). They returned in the afternoon and I instantly knew something was not quite right with Aiden. I tried asking him simple questions and he was just not making sense. Josh took the other boys to the room to not scare them and I called the hospital and said we were coming in. What has started a mild delirium very quickly worsened. I was shaking, tears flowing as I waited for the shuttle. Breath Steph, just breath. Arriving shortly at the hospital I rushed Aiden to the clinic. He was yelling at this point but I could tell he was not really aware of what he was saying or even what was around him. The team did a quick assessment and I knew it was not good. Unable to identify who I was or his name even. The team worked to figure out what was wrong thinking it could be a brain bleed, another seizure or shunt blockage. They gave him medication thinking he could have had a seizure but it did not really seem to change anything. They hooked him up to machines to monitor his brain activity and sent him to CT Scan. I tried to remain calm just holding him in my arms as I lay beside him on the small hospital bed whispering words of comfort and love even if he was unaware. There was an in and out of doctors and nurses and I really do not remember many other details in a state of delirium myself. The scan showed swelling and agitation in the brain so they gave Aiden a high dose of steroid to hopefully bring him out of this state. Aiden slept in my arms he was very lethargic but he was starting to make senses when I could rise him. Finally, the team felt Aidens was stable enough and we moved from Emergency Triage to the ICU. So many wires were hooked up to him. Aiden slept for almost two days and when we did wake he was unable to talk, my heart shattered as flashbacks from his very first surgery that gave him the mutism for so long and stole his ability to move overwhelmed me. I prayed the steroids would start to work and he would at least talk again, the only comfort I felt was knowing he was not in any pain.
On March 12th we were moved off the ICU floor, and into the inpatient room and Aidens voice came back. Aiden went for MRI and it was as I had expected… There was more cancer growth and as I feared the team told me they do not see the trial as a viable option anymore. It would cause Aiden more pain than what it is worth and that is something we all agree we do not want for him. The next couple of days were very difficult accepting the next steps and figuring out where we wanted to be.
March 13th we prepared to head home. I really loved St.Judes; the care and support and did not want to leave but the high dose steroids seemed to be working now and I was told we could still have some good quality time together at home with our family for a couple of weeks. During this time Covid-19 was really picking up and there was talk of borders closing. I was fearful that if we stayed longer I would not be able to get home after Aiden passed. I would be alone in my grief and in another country. The following day Josh was going to pack the room up and drive home with Lynkon and I packed Declan and Aiden up and headed to the Airport. I will never fully be able to explain how unbearable the flight home was. I can still hear the echo of my cries ringing out in the terminal but it did not even feel real. It was a mother whose heart had completely died, raw, an empty shadow. Two planes later and we arrived in Ottawa. I collapsed in Jay’s arms as he greeted us at the Airport to take up home. My friend Nina was also there, she had been such a support over the past years with Aiden’s care and the boys and I were happy to see her there. Once I arrived at home I felt a bit of relief as well.
Over the next couple of days, we prepared for the end of life care at home with visits from Rogers House. The steroids were working really good and Aiden had energy and was awake most of the days as well as a huge appetite for sandwiches and white chocolate. We cuddled, watched movies, Aiden loved his baths and we had visits from family and friends and experienced such an amazing community rise up to support up in every way possible. Aiden was doing so well it almost seemed unbelievable that the end was coming. It was so nice to be back at home and I continued to pray that Aidens stepsisters would be able to visit soon while he was still feeling good. The stress of having the girls withheld from us under the pretence of “Covid-19” was unbearable but after a long battle in itself, finally, on March 31st our blended family was altogether! Being all together again brought on new emotions as it was really the first day we were able to talk to the girls and explain why we came home early and even harder still, that Aiden was going to pass away soon. I have never been so thankful that Aiden, true to his name, was such a fighter! Aiden had significantly declined in the last week but we still had long bouts of smiles, laughter and always an abundance of love. The smile on Aiden’s face when the girls ran up the stairs and jumped on the bed excited to greet us is one that is etched in my mind forever. I told one of the girls, just because Aiden is sick does not mean we stop living and having adventures, it means we just focus on all the good and loving times we had and still have and that is what Aiden needs right now, just to be surrounded by love.
The week before I asked Aiden if he wanted an “Early Birthday” April 1st (fearful his 11th birthday on May 1st would too long away) at first he was sceptical and said he would make it to his actual birthday but then called to me later that day saying, “Well, if you want to throw me an early birthday that’s ok too Mom.” and a big smile on his face. I got right to work planning this very special birthday and trying to make it as normal as possible. We always celebrated really big Birthday’s as they really are a celebration of life and this birthday was obviously no exception! Aiden was super excited and it had given him and our family something to look forward to as well. March 31st we all decorated and got the house ready. You don’t need many guests with 6 kids already! What I did not expect was our community to again rise up! Friends helped organize games for us to play and loot for a piñata and Aidens amazing teacher has organized a car parade which we would be able to watch from our back deck. What started as a little early birthday grew into something so much more! April 1st the cars started to line up down our road and soon went around the block and another and another, we had so many cards and posters and white chocolate dropped off, subways delivery and one of a kind cake surprise! Trying to keep with Covid rules but also saying fuck you to them we just had immediate family and it was perfect!
The next week we spent together, thankful to have arranged to be able to have the girls for the week we watched family movies and just spent time together. Aiden’s dad would come over daily for visits and Jay and I would be able to have a break and go outside with the other children. We even had baby animals come for a day to our back yard for the kids to play with and even had a baby pig in the bed with Aiden for a bit (till he smacked it not knowing what it was all of a sudden). At this point, we could see the steroid being less and less effective but we tried to make every single moment count and we did.
Saturday, April 25th, 2020 Aiden woke unaware and with staggard breath and I called Josh to come over knowing the time was near. A true warrior, Aiden spent the whole day fighting for every breath. I will never fully be able to explain the pain of watching his breath stop for 10-15 seconds thinking it is his last but then another gasp brings him back. Of being so terrified to step out of the room for a minute to even go to the washroom in case I am not there. Of being told it would not be long then the hours tick on and then told maybe overnight. I was empty exhausted and heartbroken on so many levels but kept Aiden safe and comfortable in my arms to his very last moments. Saturday, April 25th, 2020 at 11:45 am Aiden took his last breath wrapped in my loving arms surrounded by his father, step-father and amazingly loving nurse.
“Life is not measured by the number of breaths we take but the number of moments that take our breath away”
Life is a gift that is too often taken for granted. It is a privilege to be alive, to breath, to think, to love. I feel so privileged to have so many amazing moments that have taken my breath away. I feel so grateful to have so much love in my life. I am still in awe at the beauty in this world every day. Life can be hard, sad, stressful, lonely, and exhausting but it can be other things too. As I think about my life, about Aiden’s, the memories that flow through me are not the bad ones but all the good times we have; amazing adventures, intimate moments, funny conversations and stories, friendships, my beautiful family and so much more. There is never enough time when you loose someone, especially your child, but I feel like we have not done to bad at this life thing and living with the time we did have…
Always and Forever my Heart ~ #LiveBeforeYouDie
I started MamaOutpost Blog for a couple of 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 textbook medical mumble they give to you on diagnosis day; I wanted the share the real raw journey.
About Medulloblastoma
Medulloblastoma is a primary central nervous system (CNS) tumour that is fast growing. It usually appears as a solid mass in the cerebellum between the brain and brain stem. It originates in the spinal cord or brain and is classified as a grade IV cancer. In up to 1/3 of patients, the tumour may spread to the brain lining and spinal cord before diagnosis. Medulloblastoma is also the most common malignant brain tumour in children. Although it may occur at any age, it most often is diagnosed in young children.
Medulloblastoma can spread to other areas of the central nervous system through the cerebrospinal fluid. Rarely, it may also spread to the bones or the lymphatic system. It is an embryonal neuroepithelial tumor because it forms in fetal cells that remain after birth. Though medulloblastoma is not inherited, syndromes such as Gorlin’s syndrome or Turcot’s syndrome might increase the risk of medulloblastoma.
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%