You do not know how far you have come until you look back. I am so amazingly proud of Aiden and all he had gone though. Everyday he is not only fighting to beat this cancer but to get back his ability to walk, speak and eat again. Over the last couple day Aiden has communicated that he wants to look over some of his old videos so I decided to put this together for him. Looking over the videos in the past has helped him get out of some dark places when it just seems like to much. Even for myself being with him everyday these views of the past and how far he has come have helped so much. This post was just going to be the video of Josh and Aiden the first “walk” back in Almonte and Aiden and myself today but as I started going through more videos it became so much more. It truly makes be believe there is no other option but beating this Cancer. All I can say is FUCK CANCER!
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Home Sweet Home
I am finally sitting at my computer ready to write, but for some reason words do not come as easy. I look at my last post thinking it might kick this writers block but it only makes it harder as I realize I have not posted anything in a month; the last post: the ringing of the bell. I wish this could be the end of our story but there is still so much more to come.
Boston seems so long ago and details already slip from my mind. I regret not writing in the last month as I sit here trying to recall. But in all honestly, no news is good news! We are back at home and all the details of how we got here seem faded and unimportant now. The important thing is that we are all together as a family again. Trying to find normalcy and routine in between medications, feeding pump schedules and bouts of vomiting.
Josh flew home with Aiden in the evening on Tuesday, December 20th and I drove back with the other boys and Joshes Mom at 1:30 am Tuesday morning. The plan was to leave at 6 am but Lynkon woke up and though it was a great time to go! I guess he did not realize the duty free shop does not open that early. We made it back to Almonte safley around 10:30 am. It gave us the whole day to start and get the house ready. After 3 days of heavy overhaul of our whole house to make it more accessible it was ready for Aiden to come home (BIG thank you to Leena and my Brother). The 3 days can only be described as the most severe case of “nesting” ever imaginable!
On Friday, December 23rd CHEO held up their end of the bargain and Aiden was back home just in time for Christmas and to make it even better we have been at home since! I could not have asked for a better Christmas gift then for us all to be home together. To be able to wake up Christmas morning in our own beds and see the sparkle and excitement in my boys faces as “Santa” had arrived.

The Christmas was not like any before and at times yes it was very hard and emotional but it was also one of the most meaningful Christmases we have ever had. There was also a couple extra “Christmas Surprises” that added to the festivities. Thank you to the “Colautti Group” for the special Santa Drop surprise. I had to explain to the boys that every Christmas would not be like this but that there has been allot of people cheering for Aiden in his recovery and an old classmate of mommies wanted to do something extra for all the boys because they have all been so good and working so hard.
At the time of coming home we did not know when we would have to be back at CHEO (possibly the day after Christmas) so my brother and Sister-in-Law hosted a VERK-Fotherby Christmas with all of Aiden’s Grandparents, Aunts, Uncles and Cousins. It was ONE FANTASTIC CHRISTMAS will all of our immediate family able to see Aiden at one time. Also a thank you to Don’s Meat Market for the amazing Christmas turkey.

Verk-Fotherby Christmas 2016
So many people have helped in us in so many ways and if I do not mention specifically please know that every bit of support whether emotionally, financially, spiritually, etc. has been greatly appreciated and it will never ever be forgotten. I can not say enough for the community, friends, family and even strangers that have been there for us. This is truly a battle that we could not do alone and no matter the outcome we have felt more blessed and loved in so many ways that words truly do not show justice. Please read post guest to follow on Pediatric Cancer Awareness Dance that was held earlier in the month.
After Christmas, a panic quickly set in as I realized there was no structured rehabilitation scheduled for 2 weeks because of the holiday! In Boston, Aiden did 3 hours a day (1 hr Speech, 1 hr Physiotherapy (PT) and 1 hr Occupational Therapy (OT)). Yes we were at home now but we still needed to work on getting MY Aiden back; the one who can engage a room with a story, run down a golf cart at camp and polish off a full size poutine! ( I do know we may not get it all in the end but I need to know that we tried our hardest.) Thank you to the mom in the hall at R.Tait for overhearing my conversation and suggesting the PharmaPlus Mall in Almonte. The next day I had Aiden up and ready to go for his first M&A (Mom & Aiden) PT Session. I had watched his therapies everyday for 6 weeks, not saying I was close to an expert but I must have learned something. It was nice that Josh was on break from school and he came too. Not only for the second hand but also nice for Aiden to have this time with both his parents. This first session went great! The mall was a perfect place and it tied us over until CHEO called to set up a more structured therapy plan. My main goal was to just get Aiden up moving in order to keep the momentum going that we had started in Boston. We went to the mall 3 times a week and had Aiden do stands, kicks, bowling, golf, scavenger hunt. We would have him walk with walker to the pet store and stand and watch the Betta Fish for as long as he could. When we first started he still hand very limited control of his left arm and when throwing the ball it was like an invisible velcro was stuck to his hand. Over these two weeks this greatly improved. At the end of each “session” he walked as far as he could down the hall with the walker. The first time he made it about half the way but by the end he could go the whole length with a short break half way. We did have to use a little incentive at times. One day Declan and Mumma (Grandma in Finish) came as helpers. The boys were quite happy as I said I would give them each 3$ if they could go right to the end. Lucky for them Mumma said she would match my 3$ each. I don’t think I had seen Aiden move that fast before and it was fun for Declan to feel apart of it too.
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Aiden was definitely happy to be home and everyday is improving. Most recent he has even started to make UNDERSTANDABLE SOUNDS!. December 31st was one of the best days of my life as Aiden clearly said MOM! You could see on his face it took all the energy and strength he had; I can not even describe the feeling. Since then more words have been coming, they start off very muffled and more like sound without pronunciation but he is starting to communicate. I have prayed everyday that his words come back before we go to Toronto and they are slowly, Thank You God! He has a very clear “NO!” and as of today (January 23rd, 4 months post surgery) he can say most clearly, “yeah”, “mine”, “Dad”, “Mumma” but also a wider range of words that are there but need to be carefully listened for. Occasionally spontaneous string of words pop out but he can not repeat if asked. His non verbal communication has also greatly improved. He is able to point, sign “you drive me crazy”, put his hand behind his head if he needs break and many more hand signals. It has decreased the frustration level but it has been a constant learning curve for all of us.
“Declan and Aiden were cuddled together watching a show in Aiden’s room. I was in my room across the hall and I hear Declan ask Aiden, ” You like Power Rangers? Thumbs up or Thumbs Down” It is one of my first memories of seeing this new interaction between big brother and little brother communicating. “
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As soon as we were at home I also started researching additional options for therapies other then CHEO and closer to home. On discharge we were told there was limited availability and he would only get in once maybe twice a week. The problem was finding someone who specialized in paediatric as well as brain injury I finally got referred to the Carleton Place Hospital which had a opening for a paediatric patient and was able to get Aiden in one day a week for physio. They suggested Aiden use a plasma car around the house which ended up being a fantastic idea! It is not only fun but really good core exercise.
Even though we were now officially on our “6 week break” I use the term “break” very loosely. Starting from the 9th of January we have been to CHEO everyday (pretty much all day) for either therapy, MRI, dressing change, ECG, ECHO, blood draws, dental check up, and other testing. It has been exhausting but coming home every night and being able to snuggle all of my boys is worth the daily trip.
Right now, Aiden is making leaps and bounds not only in speech by physically as well. Watching him with his brothers is priceless and there is a sort of normalcy which has returned. The boys fight as brother do but then they hug and move on to the next game. Aiden is now at a place where we are trying to get him a home tutor and we have been doing science experiments and practicing writing and reading daily (Today we tried typing for the first time which he seemed to like!). The best moment over the last week though would be Aiden standing up on his own from one couch and walking 5 feet to the other couch….NO DEVICE OR HELP! Regretfully, I did not see it but Josh and Momma and Aiden were all ecstatic, scared and shocked as well but mostly ecstatic! His strength is there and better each day, he is still working on balance and fatigue but there is finally a glimpse of the rainbow.
I could write more to this post as this does not even begin to update of where we are at now but rereading this and recalling these past four week I feel happy and positive right now so this is how I leave it for the night. It is true what they say there is no place like home!

Guest Post: First Annual Almonte Pediatric Cancer Awareness Benefit
Written by: Nina Wolstenholme
EVENT DATE: December 10th, 2016
3 months ago Rebecca Keffer came to my house and asked if I wanted to help plan a benefit event. I never thought that it would turn into the First Annual Almonte Pediatric Cancer
Awareness Benefit with this years proceeds going to help Aiden Fortherby-Verk and his family. Rebecca’s sister Mya, Katelyn M., Christine F. and Jolene D joined the team and the planning began. So much to do, so little time but with Mya’s event planning skills and creativity and Rebecca’s passion and ideas and everybody’s determination to make it a success everything just started falling into place. I can’t recall how many times I heard “I want to help” or “what can we do?” Posters got printed and tickets sold. A band booked who offered to play for a fraction of their usual pay to help the event. The Old Town Hall was beautifully decorated with lots of homemade snowflakes made and donated by Linda Cybulski and her sister Colleen.
The day of the event was filled with many people who came to the hall to help set up. The hall quickly filled up with donated auction items, food, drinks, linens And decorations. We would like to thank those who dropped by during the day to help with set up as well as those who stayed late into the night to clean up. With the auction items set up (5 tables full of wonderful items), the food from North Market, the beverages chilling, people started to arrive! The Jimmy-Tri-Tone Band started up and the people kept coming in! It was a fantastic night filled with laughs and a true sense of community. It is wonderful how people come together to support local families. From the photo booth to the toonie toss to the chocolate fountain, people had plenty of ways to enjoy themselves.
So many bought tickets although they knew they could not attend, businesses and families
donated. Corporate sponsorships went towards costs of food, room rental and other expenses. It was a special night, we live in an amazing, kind and generous community. We look forward to planning the 2nd Annual Pediatric Cancer Awareness Benefit and subsequent years which will enable us to support more families that fight the battle of their lives.
Special Thank You To:
The planning team: Jolene Dickinson, Christine Fotherby, Rebecca Keffer, Mya Keffer, Katelyn Munro, Nina Wolstenholme.
To our Corporate Sponsors: Ford Kanata and Deugo Home Services
For Our Delicious Food: North Market, Patrice’s Your Independent Grocer, Edible Sins, HFT Almonte, Baker Bobs, Becca Green
And last but not least, all of the amazing donations to the silent auction:
Absolute Massage Therapy, Acanthus, Almonte Winery, Angel Horne, Anthony St. Dennis, Ashley Clouthier, Baker Bob, Bijoux Bakery, Carleton Place Winery, Cedar Hill Christmas Tree Farm, Chandler Swain, Clayton Home Renovations, Coady’s Car Care, Crush Market Place, Dan and Laurie Lord, Darlene Keffer, Dave and Wendy Deugo, Doug and Annie Craig, DSF Crossfit, Fun Haven, Gilligallau Bird Inc., Goldie Mohr Ltd., Hello Yellow, HFT Almonte, JB Arts, Jean and Paul Sullivan, Jen Toop Thirty One, Judge A Book, L.G. Lee & Sons, Lynn Mayer, McCords Excavating, Mississippi Golf Course, Monique Strathern, Nicholson’s and Pakenham General Store, Palms , Pawsh Pets, Reflections Ottawa, Rising Sun Yoga, Shoppers Drug Mart, Sophie Watts Arbonne, Soul Scents, Tin Barn Market, Wild Kratts, Zoe Dolan , Don’s Meat Market, The Hub, Vamos, Hands on Healing.
Prior Engagements for assistance with planning, linens, wine glasses and so on to help things look fantastic.
Please excuss us if you’ve donated an item, time, or money, and we’ve not listed you above. We are eternally grateful to everyone, for everything.
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Nina
Ringing the Bell
Today is the Day! Today is the day that I have watched many other people do with tears in my eyes. An overwhelming of emotions.
Yesterday (Wednesday) I met with Dr Y and Dr H, they suggested that we forgo Aidens last radiation scheduled for Friday and make Thursday the last. Because Aiden had such bad buns down his spine it shows that he is extremely sensitive to the radiation so they did not want to risk damage to his brain stem in doing the last treatment. I asked if missing one treatment would effect the outcome, with a reply that most likely not, we still have Chemo ahead of us and that it would not be worth the risk. She also said that on a positive note, in her experience, Kids who showed skin sensitivity to the radiation, like Aiden had, also show that the cancer cells are more sensitive too. FINALLY A BIT OF GOOD NEWS!
The original plan, was for Josh and the boys and Mumma (Grandma) to come down Thursday afternoon for the bell ringing Friday. As soon as we got in the ambulance heading back to Spaulding I called Josh’s Mom. “Can you pack and get here tonight?” Josh was writing an exam and Declan had his First Christmas Concert that night. I feel like everyone needs a Mumma! With no hesitation Leena said I’m on it! She packed everything and ran down to Kingston to get her Passport and was back before school even ended for the boys!
That evening Josh had sent me photo and video of Declan’s First Concert. A little emotional that I could not be there but happy that we made it a priority that Declan not miss it. Josh and the Family left after the Concert and through sleet and snow made it to Boston around 3 am. Aiden was pretty surprised to see them a day early!

During this time we were also in communication with hospital back home. With ending of treatment, also ending of the Ministry funding for the rehabilitation. I could not imagine sitting back at Cheo with Aiden for Christmas it was not an option. The other suggest they had was that we go direct to sick kids for intensive rehabilitation. I saw this as even a worst option, sending Aiden to a new city, new hospital all together, out of the question. At least if we stayed in Boston longer, Aiden was familiar with surroundings, we had the Ronald Mc. Donald Apartment across the street, and Boys ad Josh were here. I decided I needed to lay this out very clearly for the team back in Ottawa. I now needed to advocate for the best interest in my childs mental health. After a couple email back in forth pleading my case we aggreed that the below proposal was doable (if no problems along the way, such as getting equipments, fevers, etc.). I have never been so thankful in my skills for business writing!
From: Stephanie Verk <sverk@icloud.com>
Date: December 14, 2016 at 9:53:58 AM EST
To: Caseworker
Subject: Re: Home
Good morning,
Thanks for getting back to me so quick. Can you forward me the email regarding care and equipment so I have a better understanding where we stand. I had assumed with Christmas holidays things would be slow that is also why I did not see benefit in going directly to Toronto as not much rehab would be happening.
If we do plan to come home now, would be a realistic timeframe:
December 20th fly to Ottawa (Cheo).
December 20-23rd assessed at hospital
December 24th-26th home in Almonte
December 27th – back to Cheo to continue assessment/figure out rehabilitation plan going forward. (Stay Cheo, Toronto rehab, outpatient rehab?)
Thanks,
Stephanie
Sent from my iPhone
So everything was lining up! Looks like “I’ll be home for Christmas”. It was such a hard decision because the rehabilitation has been so good here at Spaulding Rehabilitation Hospital but one of many hard decision we have already faced.
So Thursday, the day has finally arrived! Aiden is beaming, he is ready to ring this bell. I went in the Amulance on the way there for the finally trip. When we arrived the girls in the Proton room had made it extra special for Aiden, decorating his bed, a present, reindeer Aintlers and also let Aiden and his brothers pick an extra toy because he is missing Friday (Which is usually toy day). I can not thank the team at MGH enough for making this experience bareable. The staff and nurses were amazing. Offering Art and Music as we waited everyday, being a shoulder to cry on, talking to Aiden not as a sick kid but a normal 7 year old boy. They were always there giving the best care, dental, fevers, blood draws, gastro, you name it Aiden got it looked after. A special thank you to Rachel! When Aiden was swatting all the other nurses trying to draw blood, Rachel just had a way with him and he would not even bat an eye!
Finally Aiden went into the radiation room for the last treatment as we waited in the waiting room. 45 mins later he was finished and Josh texted they would be coming out soon. I thought I would be balling my eyes out, as I had done for so many of the other children I had watched ring the bell but this was a different emotion. I was just plain HAPPY! And so proud of Aiden. We made it through this first part, 6 weeks done! I know we still have a huge battle ahead but step one complete!
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Video: Walking for Pokémon Balls
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So we have finally found Aiden’s motivation! Over the weekend he has made amazing rehabilitation in his left arm/hand and coordination in his fingers and improvement in his eyes sight that he is now able to play iPhone games again! With that we also found out that there are new and different Pokémon in Boston. He loves being able to play Pokémon Go and earning balls to catch all these new friends! Hey yes it is bribery but hey he walked 100 feet today in a regular walker, build a robot, ate 8 spoons of pudding, played Bingo and did car transfer so it that’s what it takes well worth the $5.99 for 100 Pokémon Balls!
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This second video is in the proper walker that fits him better. He walked all the way to his bed!
A half told story…
As I write this, I try to write this as a narrative, as a novel. I try to disassociate myself from the reality of the words in the story. If this was a novel it would be placed in the horror section because nothing is more scary then watching your child battle cancer. Watching your child battle death. Yes I said the word, death. Because in this story the mother is trying to come to terms with the fact that this is a possible outcome, “that we are not in the favorable outcome category”. In this story the mothers trying to understand what these words mean, tries to imagine a world unlike the one before, a life with a piece missing. It is unimaginable and dark and full of terrors. “At this time I need to talk to you about grieving “”at this point we still have the intensive Chemotherapy and that is why we do both” all these words are told but not fully heard. The mother knows it is not good when the doctor tears up and tells her husband and her “life is not fair sometimes”. The mother returns the next day to get clarification, or maybe she is looking for hope. Hope that she heard the doctor wrong, hope that there is more then this. More then just watching and waiting for death to win.
Back in the tiny exam room the mother has her list of questions, prepared this time. First questions: “when you said grieving is that what we should be preparing for? Is That where we are right now, are we preparing for worst case scenario, then what is the point?” The doctor apologizes for leaving her so hopeless and tries to explain, saying a lot of the same stuff all over again. “There are many forms of grieving, grieving about time already lost, grieving about unfavorable results, grieving is a process….” He explaines that with medullablastoma there is low risk category, where the cancer is in one spot and fully removed (not them). Then there is high risk, where it has metastasized in a couple spots in the spine as well as the back of the neck, surgury is performed and radiation to kill the rest (what they thought they were). He then explains that in this case the scans have shown numerous growth in his spine, and on arrival to Boston found in other parts of his brain as well (that were visible in the very first scans but never picked up) there are spots on the brain behind his eyes, spots round his ear, spot on areas effecting smell, in short, alot. So what are we looking at?” The mother askes “we were given 70% success rate before, what is it now?” “I do not have a number but I see a number is important to you so I will see if I can find out” the mother pushes “Like 50%? 10, 5, 2%?” Feeling herself falling and partly not wanting the answer. He can not say… The mother hesitates to ask the next question on her list, does she really want to know the answers? “So at this point is the radiation working at all. is he where he should be this far into treatment compared to other kids?” “The hope was that the scans would show the spots completely gone or significantly smaller.” The doctor tells the mother “there was a meeting where his case was reviewed and half at the table said, “good they have not grown, there is no new spots, and some have diminished a bit in size. Although the other half of the room said “yes, but they are still there.” So the mother concludes that half the room is glass half full people and the other half, glass half empty. The Dr laughs “yes you could say that”. “So what does this mean?” The mother asks, “have you seen cases like this where the chemo takes out the rest? Can you live with spots still in the body that don’t grow? Have you seen this? What will it look like, That he could just stop breathing. Will we know ahead of time? Can we do more radiation? Will we do more radiation after Chemo. When will the next scan be?” The doctor says that yes he has seen cases where the chemo gets the rest and we still have two weeks here and they are going to do extra shots of radiation here. Yes you can still live with scans that show spots if they stop growing. Yes that is one possible outcome depending where and if the cancer grows again. He can not speak on what the chemo will do because we are not there yet. “The next scan would probably be before you start Chemotherapy” the list of questions is done but a hollowness fills the answers. The mother leaves and tries to make sense of it, of the meaning of it all and can’t. A part feels more hopeful after the second talk but she wonders if she is manipulating the words she has heard. Is denyal one of the first steps of grief.
In this story the mother has started begging god to help. She remembers standing over her new borns crib every night praying that her beautiful baby boy grow up to live a LONG and happy life. That he would be funny and smart and handsome and kind. That he would have many friends and could do anything he put his mind to. Every night the same prayer to keep her baby safe and grow up to be a mighty man of God. Somewhere along the way these prayers stopped. Somewhere along the way her life got to busy for prayers. She knows she has felt god in her life answering prayers before and she calls out to god that he remembers these nights, every night so long ago, when she was a much younger mom and had a mighty faith. She remembers being told that if you pray that it has already happened it will and this is what she did EVERY night over her first born.
Mark – 23“Truly I tell you that if anyone says to this mountain, ‘Be lifted up and thrown into the sea,’ and has no doubt in his heart but believes that it will happen, it will be done for him. 24Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours. “
The strong mother that only cried once every 2 weeks now breaks in moments throughout the day, now kisses the bald head of her sleeping child every night with tears dripping onto his warm skin. The mother has walked around the last week in a constant conversation with herself, with what ifs, and replaying all the possible scenario of all aspects of her life in her mind. Holding this information, unable to speak, this weight is sinking her. The writer of this story does not know whether to share this story yet, she wants to write a fairytale with a happy ending. A triumphant story where a little boy fought hard and learned to walk and talk again and kicked cancers ass all with a smile on his face And they all lived happily ever after. The writer does not want others to worry like the mother has been. she wants to hold all the pain and worry to herself, to protect the audience. To not post until there is a better outcome but then what does that really mean. So does the writer post a half told story?
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