Ronan's Cancer Fight & Dreams Fund

$93,090 of $100,000 goal

Raised by 623 people in 6 months
Created August 29, 2018
In August 2018, our family received news that turned our world upside-down. My gentle, soft spoken, considerate, smart, athletic, 12 year old nephew was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG), a terminal, inoperable brain tumour in the brain stem.  Ronan's life expectancy is measured in months now, but we hope to beat the average and make these months memorable for him and his family.  He will complete a round of radiation therapy, and that will hopefully shrink the tumour temporarily and gain some precious time.
My name is Karla Rice, and I have set up this fundraiser for my sister Sarah Jane, her husband Mark, and their sons Ronan and Aidan.
There are no words that can describe the complete and utter shock, grief and helplessness that Sarah Jane, Mark and their entire family felt when hearing this news. Knowing that their son, a sweet, kind boy with unlimited potential will never grow up is an unbearable thought.  His little brother Aidan will have to live his life without the support and love of his big brother.  They will never reach those milestones together that we assumed would be a part of their lives.  His grandparents, cousins, aunties, uncles, friends and countless others will forever be impacted by his life.
The remaining time with Ronan is so very precious.  While he undergoes his radiation treatments, and we hope to hear of a new, promising treatment that might be discovered, we are trying to turn our focus on making his life be the absolute best it can be in the time we have left.  There is a lifetime of experiences and memories to create in a few short months, while also having to plan for the additional costs for his medical and at home care in the months to come.  
So many people who know him, struggle with trying to figure out how they can help.  Most of us want to help Ronan fulfill his dreams and ensure not a single moment is wasted - to make Ronan's life as full, happy and comfortable as possible.  Sarah Jane and Mark’s colleagues, friends and extended family have been asking about a go fund me page.  The outpouring of support has been amazing, and Sarah Jane and Mark are so thankful for the thoughts, prayers and support for Ronan and their family.   This fundraiser will help them make a lifetime of memories for Ronan and their family, and to provide for him the help and care he needs in his battle with cancer.
Thank you, from the bottom of my heart, for your support.

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Ronan turned 13! We are so grateful that he was able to celebrate his birthday and enjoy the big milestone. He has always been creative and on this occasion, he suggested that perhaps a few friends could come over for a paint party. He wanted he each person to create some tape art on a canvas. His days and nights were completely flipped though, and worry started to set in when he was struggling to wake shortly before the guests arrived. Luckily, he made it to his own party just in time, and was able to bop his head to music and chat with his buddies till the early hours of the morning. This was all Saturday evening, but his actual birthday on Tues Feb 12th, was a chance for his immediate family to gather with him. His Uncle Tim (who turned 40), and cousin Lily (who turned 4), are his birthday buddies and so of course, Ronan being the thoughtful, creative kid he is, had a gift idea that was unique to each of them. He decided to give Lily a heart shaped locket with a photo of the two of them. With the help of Aunty Julianne’s co worker Carrie Bosse, her husband Tony, and some very kind people at High Signs, his vision of Uncle Tim’s snowboard became a reality (see photo below). The amazingly talented & genuinely caring team at Confections Cakes Co in St Albert, made him a cake. Not just any cake, but a massive and customized one just for him – the Carey Price jersey, Ronan’s coolest shoes, his watches & gold chain that are special to him were all part of the creation. When the cake arrived, we discovered that they made another one for his birthday buddies too, and we became even more appreciative that they delivered it because it would have been the most nerve wrecking drive home with it in the car lol! Thank you to the many people who sent Ronan videos with birthday wishes. It was heartwarming to say the least. Ronan, Sarah Jane and Mark watched the videos together at 4am on Feb 12th. I am not exaggerating when I tell you that his nights and days were completely flipped:) . It was a beautiful way to feel the love and well wishes of so many at a time when the nights can be long.

Ronan’s symptoms are progressing further, causing more pain and discomfort. His back pain has increased likely due to multiple micro fractures in his spine (as a result of the rapid weight gain and continued use of the steroids). Skin pain and nerve pain are also issues. Sarah Jane and Mark are taking the steps needed to keep him comfortable, but this means he will likely sleep for a large portion of time as the body starts to shut down. They are trying to enjoy the limited time where he may be lucid and able to talk or interact. Hero doesn’t shy away from spending time with him either. He is frequently lying at the end of the bed or curled up right next to Ronan. From here on in, they are not sure what to expect each day or how much time they have left with Ronan. They have no choice to but to live in the moment and take one step at a time.

While this update isn’t a happy one, there have been some wonderful moments, and so below is a link to a short video highlighting a few photos from this big 13th birthday.
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We are in the sixth month of this battle with DIPG and I struggle to accept what my eyes are seeing. There are more physical challenges and heightened pain for Ronan, despite everyone’s best efforts. It just seems so wrong – so senseless that a child should be on a journey such as this, and that his family and friends are left watching helplessly. My heart aches in a way that it has never before, and my mind can’t fathom what is happening.

Leading up to Christmas, things were getting increasingly difficult for Ronan and for a few weeks, he seemed to turn inward, as though trying to reflect and make sense of all of this. It seemed as though Dec 23rd was a turning point – possibly the day Ronan decided that cancer wasn’t going to ruin his Christmas. Cancer gave it a new meaning, but couldn’t take the love away. The days following Christmas, he had relatively low pain and was in good spirits. Sadly, the tumor is steadily progressing though and pain is a regular part of his days. His eyes no longer allow him to play the PS4 and his hearing has significantly worsened. Somehow though, when well enough and not in discomfort, Ronan spends his days bringing joy to his cousins, visiting with his friends, cracking jokes with his parents and brother, giving hugs to his grandparents and just amazing us all with his genuine caring and clever sense of humor. He expresses his gratitude for every act of kindness he receives. I don’t know what his thoughts are in his mind when he struggles to fall asleep every night, but I know what they should be – what I hope they are. I hope that he knows that he has made a difference. That he is loved immensely and admired. That we are thankful for the time we have with him. I hope that he doesn’t feel scared and that he knows that he is, and always will be, surrounded by love.

For those, who have contributed to the meal train – thank you so much! To those who send him messages, keep them coming – he loves them. Thank you for sharing his goalie sticker, donating to this fund, and praying for comfort….thank you so very much.
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As we try to live in the moment and make the most of each day, it seems time just keeps slipping away too quickly. With the amount of kindness and support from others, and his parents working so diligently to give him the best each day, he has had so many wonderful experiences – almost too many to document them all, because behind each one, are several very kind, thoughtful people who made them happen.
Ronan was able to have the Halloween Party he requested. Prior to Halloween, he first experienced Deadmonton and loved the face make up they did so much, that he requested they do it for his party too. Revolution Entertainment supplied a fantastic DJ and photo booth. (Would highly recommend this company!) He had the coolest experience going to the Drake concert in a limo, with amazing seats and meeting Drake backstage. Misty and her team at The Foundry created an opportunity for some Nerf fun for him and a group of friends. A family friend was able to arrange for “driving a tank” to be crossed off the bucket list. Back in Line Chiropractic has brought him tremendous comfort through massage. Since he had a deep appreciation for the relaxation it brings, he was a regular visitor there and got to know Chasity. Chasity also organized a few hours of drifting at Castrol Raceway. A hot tub in the back yard is something that Ronan has always wanted, but now it has become a way to sooth his muscles and help the family to unplug. Some very close friends even surprised them with twinkling lights on the deck to enjoy while relaxing under the stars. Manoj Gupta, a new friend he met on this DIPG journey, called upon his friends (raceforthecure.ca), and together they surprised Ronan with the most amazing collection of cars all in one place. A quick trip to Disney was made in December which they are so grateful to have been able to do. Travelling at this point is difficult for Ronan as he doesn’t have the same level of physical stamina.
It seems that more than ever, he has been feeling the support of his hockey world, through their generosity, events such as the pink at the rink game, and even through Instagram….
Prior to his diagnosis, Ronan was a passionate goalie who played for the Northeast Eagles. He was looking forward to attending hockey camps in August, and preparing for a new season. Unfortunately, his symptoms progressed so quickly that he never did get to go to camp or play hockey again. Even with his balance deteriorating, he was determined to get on the ice so his family arranged for a private on ice session in August. That was his last skate. He misses time spent competing on the ice and hanging out with teammates in the dressing room.
While he can’t play the sports he loves so much, he has felt the kindness and generosity of others like never before. Here are just a few of the special sports related things people have done to show support:
- He was able to spend time with Carey Price when the Canadiens were in Edmonton.
- He did the coin flip at the Eskimos game after attending their practice.
- Went to an Oilers practice, some of their games, and got to meet Cam Talbot.
- The Make a Wish foundation sent him to England to see an NFL game.
We will always be grateful to the people who thought to organize such opportunities and worked hard to make them a reality.
Currently, Ronan’s medication and treatments make it difficult for him to do so many things. His energy is low, his body isn’t the same, he needs to wear an eye patch, his balance is off, his muscles are sore and weak, and watching these changes all unfold is very difficult for him and our family.
When we see people wearing his sticker on the ice, we feel like a little bit of Ronan is on the ice. The sticker means that people are hearing his story and acknowledging his struggle. The sticker also reminds us that life can be short and we need to live in the moment. How would you play your next game if you knew it was going to be your last time on ice?
And finally, Ronan decided one day to seeing how many followers he could get on Instagram. It started with a challenge to see if he could get from 300 to 400 followers. Well as the number climbed, so did his excitement. We didn’t expect it to continue so quickly, but now that he has reached over 1000 followers (1282 so far), he is so delighted. Feel free to follow him at ronan_smitty, and know that every time the number rises, he smiles a little yet again.
The videos that are included in this update were made with the help of my husband, but we wanted to give a shout out to Cadden and Bell Productions. They have volunteered their time to capture several of these special moments on video for our family. We hope to share some of their amazing work with you a little later.
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Update 10: Las Vegas (September 21,22,23)

With the early snow and the approval from doctors to travel, it seemed like the right time to check Vegas off the wish list.

Ronan had heard about Vegas from close friends who had vacationed there as a family. He loved the idea of shopping, warmth, cool shows, bright lights and tasty food. He was not disappointed. Special thanks to dear friends, and a very kind lady, for gifting them with awesome tickets to see the Jabbawockeez and the Michael Jackson Cirque du Soleil show. Ronan reported that both shows were amazing.
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$93,090 of $100,000 goal

Raised by 623 people in 6 months
Created August 29, 2018
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