Give Hope to Aiden

My best friend, Stephanie, and her son, Aiden, are currently at St. Jude Children’s Research Hospital in Memphis, Tennessee, a world-renowned hospital that fights every day to defeat childhood cancers.  Her second son, Declan, is with them.  They need your help. 

Three years ago, Aiden was diagnosed with an aggressive form of brain cancer.  The road to St. Jude’s has been long and the battle is still far from over.  Stephanie is dealing with setback after setback but she refuses to give up hope.

Stephanie is the strongest person I have ever met. Her endurance, resilience, faith and love for her children and those around her have always been an inspiration to me. She has overcome many obstacles and she has never lost faith, or the ability to love and to see beauty in life, despite being locked in battle with such a terrible disease.

I am so incredibly grateful for any financial support you can give to my best friend, Stephanie, and her boys, Aiden (10), Declan (8), Lynkon (4). Told numerous times her son, Aiden, had only months to live, they are now in year three and in a different country fighting every day to beat this awful disease. All Stephanie wants is to give Aiden the best possible life she can for as long as possible. 

Stephanie has been unable to work for the last three years.  She receives no child or spousal support and very limited social service funding. We may not be able to take away Aiden’s cancer but we can take away the financial burden from this amazingly strong mother so her focus can be where it needs to be, her children.

Donations will help with all of the medical, travel, and accommodation expenses that Stephanie has incurred over the last three years as well as those expenses that are still coming. Donations will help with daily living expenses and will ensure the boys have great memories together for whatever time they have left. If this trial is not successful, donations will also go to help pay for funeral arrangements if, God forbid, that time comes. Any contribution would be greatly appreciated.

AIDEN’S JOURNEY - HOW THEY GOT HERE

2016

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Aiden Victor Paul Fotherby-Verk is a 10-year-old boy who lives up to his name, which means Fiery Conquerer! At age 6, Stephanie, 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 them more than once. An MRI showed a very large tumour in the back of her son’s brain.  They were 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 Stephanie immediately traveled to Boston for radiation and extensive rehabilitation. They then traveled to Sick Kids in Toronto for chemotherapy. Stephanie 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 they were away for that year. It was completely devastating for this young mom as she felt that she was losing all her sons, but she knew she 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, but both parents were stressed out.  Even before Aiden’s diagnosis, the couple had had problems. Under the increased strain, the marriage faltered and the made the decision to separate. 

2017

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Stephanie became a single mom of three young boys. But things were looking better for Aiden. In July 2017, Stephanie 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, Stephanie 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, Aiden’s parents were told to transfer care back from Sick Kids to their home hospital (CHEO) to be close to home for whatever time they may have left, with an estimate of 3-5 months.  Stephanie 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

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By March 2018, Aiden was so ill Stephanie 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. Stephanie took a second leave from work thinking Aiden only had a short time left.  In April 2018, they 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. Stephanie just tried to create as many fun adventures and memories as she could for her boys, but most importantly, she wanted to show her 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, Stephanie 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. Stephanie never left his side.

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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.  Stephanie found a very supportive partner who has three girls of his own and they became a great crazy blended family of six kids! 

Then sadly, again in March 2019, the scans showed Aiden’s cancer was returning. Again, they were told to take him off chemotherapy as there was nothing more that could be done. Again, Stephanie refused to give up and hit the internet finding the drug protocol Sick Kids calls Memat. She constantly asked about St. Jude trials knowing this may be Aiden’s only hope. In April 2019, the family was 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 Stephanie 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. Stephanie was quick to react and rushed Aiden to the hospital. A palliative care team met with them to discuss end of life procedures and extraordinary measures which Stephanie said she could not allow – she could not imagine them pounding on his chest in his last minutes.  “If he is to go now, I just want him to be in peace.” Heartbroken, Stephanie 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! 

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Then July, the oncologist again said the chemo was not working and to take him off and prepare for end of life. This time they did. Stephanie prepared for the worst, even visiting a funeral home to start arrangements. Their oncologist suggested they meet with a radiologist in hopes that radiation could buy Aiden a couple more months.  In her blog, mamaoutpost.com  Stephane shares “We have bought more time than ever thought possible but I feel 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, they permitted Aiden to undergo a radiation MRI that week. The oncologist called Stephanie the same day to say “PUT AIDEN BACK ON CHEMO, IT IS WORKING!”  Stephanie was shocked but overjoyed! Once again, Aiden amazed his parents and medical professionals! It took four weeks for the hospital to arrange for Aiden to go back on his chemo protocol. The stress this caused Stephanie was unbelievable, but she remained positive. Thinking Aiden would not make it to Christmas, Stephanie arranged an RV trip to Santa’s Village to allow their blended family to have one more Christmas together. They continued with their 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, Stephanie rushed him to CHEO again where a CT scan showed the tiredness was not the result of a shunt blockage but the cancer itself. Stephanie and Aiden went to Roger Neilson House for palliative care. Stephanie 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. Stephanie 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

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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. They were told to take Aiden off chemo again, but again Stephanie said NO! She 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? Stephanie knew Aiden’s tumour had been sent to St Jude’s the month before and they were still testing it. She pleaded that CHEO follow up with the St. Jude’s trial and she told the doctors and Aiden’s dad to keep Aiden on chemotherapy for one more month until they could have another scan in February.  She was hoping against hope that the St. Jude’s trial would come through. That Wednesday, Stephanie received the call… Aiden’s tumour passed the genetic testing process and Aiden was eligible for what she 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 their home hospital. Finally, Stephanie herself reached out to St. Jude’s and was amazed when the person on the other end of the phone greeted her 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, Stephanie, Aiden and his brother Declan were on a plane to Memphis. Stephanie knew she could not leave Declan for a second time.  So she took out a second mortgage on her house to pay off some of her credit card debt so she could take Declan with them. Hope was restored! 

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The first day Stephanie raved about the hospital. Everything they usually had to wait months for was set up immediately; her St. Jude’s online calendar was populated with consults with nutrition, physio, occupational therapy, the chaplain, child life and music therapy. Stephanie's only regret was that they did not get to go there sooner. The next day, Aiden and Stephanie met the fellow working on the study and all of Stephanie’s hope was replaced with devastation.

No one had told Stephanie 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. Stephanie was told she could stay her for three weeks and wait it out or go home and then come back if Aiden was still well enough. Stephanie was told that sometimes it can be difficult to get back home for end of life. Shocked, and not knowing what to do, the doctor said she would cancel Aiden’s MRI for the next day as they would need to redo it to start the trial. Stephanie asked if they could keep the MRI to give her 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 Stephanie 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 Stephanie what she had been doing differently - the MRI actually showed a small decrease in his tumour! Stephanie said she 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!

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This left Stephanie with the choice to go home and continue on the same protocol (the one they had been told twice was not working) and then they could come back to Tennessee in three weeks or decide to remain home. Stephanie told me she 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. Stephanie told the doctor she has always held Aiden’s quality of life as priority number one, and was worried about the harshness of the trial. The doctor assured Stephanie he would let her know when to stop but, looking at Aiden right then, he thought the trial was a very feasible option. 

As Stephanie tends to make the best of the worst situation, she asked the doctors if she could drive the boys to Florida for the next week and half while they waited.  Stephanie’s dad, step-mom, and aunt and uncle are all in Florida for the next bit. Stephanie said “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, this is where the family is at now…… They have unexpectedly had to extend their stay by a month with out-of-pocket costs. Once they start the trial they will be at St Jude’s for a minimum of two months and, if the trial shows to be working, they will go back and forth monthly for an unknown period. The hospital will cover one parent and the sick child to travel but there are so many unknown additional expenses at this time. 

Any contribution you can give to help this amazing mom and her beautiful boys would be greatly appreciated.  

Please follow Aiden’s journey at mamaoutpost  on Facebook or Stephanie’s blog mamaoutpost.com  and help spread the word.

Please share our gofundme link  with your friends and family and to your Facebook or other social media timeline.

A huge thank you for all your love and support! 

Sincerely,

Mallory

“The strongest people have not been given an easier life. They’ve learned to create strength and happiness in the darkest of places.”

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Organizer

Mallory Ann 
Organizer
Almonte, ON
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