Support 3-year-old Odin's Medical Journey - Large Brain Mass

Post Surgery Update/

Tuesday July 30, 2024

Odin was in surgery for close to 8 hours today. The magical hands of both surgeons delivered positive news to Chris and Amy at 2:30pm. It was not a tumour after all.

It was a collection of tissue that appeared to look like a tumour. The tissue of the mass will be tested but the Drs do not think it is cancerous. The Drs then continued back to the operating room to finish and close up his little skull. He finished his surgery at 4:30pm and by 5:30pm Chris and Amy were able to see their baby.

One week ago today, Odin was initially going in for a routine MRI to see about his mobility issues. The discovery of a mass was in fact putting pressure on his brain which is was causing his mobility issues and delay in speech. Now that they removed a large portion of the mass, the Drs shared that he will be able to walk and talk. This is truly positive news! There is a portion of the mass that was left untouched as it is in a very sensitive part of the brain that the Drs did not want to touch. He’ll continued to be monitored in the future.

After surgery and while in recovery, Odin woke up asking for his mum and for some milk. He truly is the strongest little guy! A little warrior! Since he has to be sedated tomorrow for another MRI, he wasn’t able to drink any milk or other foods and fluids. They hope he’ll be scheduled in early in the morning so he can have his milk.

The team of nurses are taking really good care of Odin. He required a procedure where they stuck a tube down his throat to remove the saliva bubbles in his throat to help his breathing. Amy said it was horrible to see them doing that to him because he was so uncomfortable and gagging. But knowing it’s to help his breathing, it’s good they really monitor everything.

Odin is now in the paediatric intensive care unit (PICU) and he will remain there for a few days. They will the transfer him back to his usual hospital room. For the next little while, only mum and dad will be able to see Odin in person to keep him safe of germs and to help his little body rest and heal. They will be at SickKids for weeks.

As of this evening, Odin is currently watching the movie Cars and is in and out of consciousness. They have him on a morphine drip and other pain meds to help with the pain and recovery.

I’ll continue updating about Odin’s journey as I receive updates from his parents.

Let the tears flow, the tears of relief, of happiness, of gratitude, of the most beautiful answered prayers for Odin. Continue keeping them all in your prayers and positive wishes. This will be a long road to recovery and I know each of us will continue to walk with them.

Thank you / Miigwech from Odin’s loved ones

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Important Update:

Monday July 29, 2024 10:30pm

Odin’s surgery to remove the nervous system tumour is scheduled for tomorrow morning. It will be an all day procedure.

After going over the associated risks with Odin’s team of Drs, Chris and Amy agreed that doing the surgery ASAP was meant to be as the 2 best brain surgeons in the world - Dr. Peter Dirks and Dr. James Rutka - will be doing the surgery. Amy believes the stars are aligning because had it been any other time, only one surgeon would be available at SickKids hospital.

Chris and Amy are having an extremely difficult time today. The tears are constant and it’s been very hard to hold it together. They are trying their very best to be strong for Odin but they are feeling overwhelmed and scared. After they went over the risks for the surgery, although the risk of death is very low, there are other possible outcomes.

- Odin may require a feeding tube for the remainder of his life.

- Odin may also require a breathing tube placed in his neck.

After the surgery, Odin will be very sick and may not really be able to talk much after. Odin will have assisted breathing support and he will be in the Intensive Care Unit for a period of time thereafter. Following ICU, Odin will receive intensive rehabilitation for weeks. This means, Odin will be required to be at SickKids in Toronto for weeks to be nearby the team of Drs who are closely monitoring him.

The 2 Drs shared, out of their decades of brain tumours they’ve operated on, they have never seen a tumour the size of Odin’s. The tumour is located at the base of his head where it is going down into his neck and spine and into the part of the brain they do not like to operate on. They are hoping to leave that part of the tumour alone and focus on removing the rest. In order for them to get the other parts of the tumour, they will need to remove a small bone in Odin’s neck and a portion of his skull.

Amy and Chris are hoping the surgery takes place tomorrow. There is a small 20% chance that it gets postponed but they are hoping everything goes as planned. This is the best they could have ever asked for, to have both sets of eyes on their baby boy.

Lots of prayers for Odin & family.

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Miigwech for all the donations and shares of Odin’s GoFundMe. The initial goal has been reached in less than 24 hours. ❤️ As there are still many unknowns about Odin’s journey - the length of time he’ll be in the hospital, other procedures he may require leading up to and after removing the tumour from his brain, and the many follow up visits after - we will continue the fundraising efforts. Thank you all for your support.

Odin’s Journey

Odin (minoo’mine waasige) is 3 years old from Alderville First Nation.

He is the son of Chris and Amy Smoke, grandson to Randall Smoke and Annette Francis and Karen Elizabeth and Chris Norgan.

On Tuesday July 23rd, 2024, Odin’s parents took him to a routine scheduled MRI at Toronto SickKids Hospital for mobility issues he’s experienced throughout the duration of his young life.

Siblings: William, Stirling, Freya with Odin at the hotel the night before Odin’s scheduled MRI appointment

At this visit to SickKids, the MRI determined Odin has a large brain mass and fluid around the brain that needs to be drained. Odin was immediately admitted to the hospital to receive urgent medical attention. His family have remained by his side since.

Odin will see several Drs and will undergo several tests to determine what procedures are required prior to undergoing brain surgery to eventually remove the mass.

Today, Friday July 27th, Odin will undergo the first procedure to place a shunt in his brain to help drain the fluid. Please keep him in your prayers.

Odin with his mum Amy preparing for his first surgery

To assist Chris and Amy during this time, as a family, we are coming together to help in any way possible. This includes the help with expenses, care packages, and of course prayer.

As SickKids hospital is located in downtown Toronto, the commute from home to hospital is a minimum of 2 hours each way with Toronto traffic always needing to be considered. The following expenses of travel, parking, meals, accommodations, etc. are the focus at this time. We aim to raise funds to cover these costs and to help remove any financial stress for his parents during this time so their focus can be on the care of their Odin.

How You Can Help:

Your support means the world to us.

Miigwech

All of Odin's Loved Ones

Update #1

Friday July 26, 2024

SickKids Hospital, Toronto Ontario Canada

Odin had surgery today to place a shunt in his brain to release the liquid in his brain and where it will be drained into his stomach. The team of Drs shared with the family that everything went well. He is now in recovery.

Diagnosis:

Odin has been diagnosed with a nervous system tumour. The nervous system consists of the brain, spinal cord and nerves of the body. Nervous system tumours consist of collections of cells that are actively dividing leading to the growth of a tumour mass. There are many unknowns about the cause of these tumours.

Please continue to keep Odin in your prayers & Miigwech for all who have been sitting in ceremony for our little guy - minoo’mine waasige - Odin.

Update #2

Friday July 26th, 2024

Odin is out of recovery and is now back in his hospital room. He’s resting and watching Peppa Pig.

Update #3

Friday July 26th, 2024

Odin was experiencing quite a lot of pain this evening. Once his pain meds kicked in, he was able to get some rest.

Update #4

Saturday July 27, 2024

Odin had a rough night and was up throughout with pain. ❤️‍

Keep the healing prayers going & positive thoughts flowing for this little warrior.

Update #5

Sunday July 28, 2024

Odin is continuing to rest and heal. His dad said he hasn’t lost his appetite and is eating well. He’s enjoying an egg bite in the photo above. He loves them!

There are still no updates from the medical team on next steps. He is experiencing pain and it’s being managed by morphine to help keep him as comfortable as possible.

Odin is able to sit up and play with his toys and watch his shows and he’s even had visits with family.

Odin sitting up in his hospital bed

Odin & mum Amy

Odin’s Grandmother Karen.

Odin’s cousins and siblings visiting at the hospital

Uncle Caleb, Odin, Dad Chris

Big sister Aurora and Poppa Smoke

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The families would like to extend many thanks for all levels of support Odin has received thus far. From the donations, the love and support, those continuing to share Odin’s GoFundMe journey, and the resources people have shared that may be available to Odin during this time. The family is working behind the scenes to follow up on all the supports that may be available for Odin - such as Jordan’s Principle, FNIHB, Ronald McDonald House, etc.

Miigwech to Alderville First Nation and the community for your continued support.

We would like to give a special Miigwech to councillor Dawn Marie Kelly of Alderville First Nation. She’s been on speed dial from the very beginning and available to answer questions as needed. She has gone above and beyond and has brought so much compassion and comfort to the whole Smoke family.

Finally, chi Miigwech to our spiritual family for continuing to sit in ceremony for our minoo’mine waasige (Odin).

Love from Odin’s Family ❤️

Update #6

Sunday July 28, 2024

Today, Odin had his bandages removed and cleaned by the PSW with the support of his mum. They spent time providing some TLC with bath time and wound care.

*Trigger Warning for those who may be sensitive to visuals*

Odin’s parents shared the following photos. You have all been a part of this journey and they have welcomed keeping each of you up to date as many of you love and care for Odin too. Here are some photos of the first procedure to remove the fluid from his brain.

Friends & Family, as we continue to keep Odin in our prayers, whisper a little extra for his family. The exhaustion is truly setting in and although they are relieved the first surgery is over, the anxieties continue knowing he will undergo a surgery to remove the tumour in his brain.

On a special note - Odin’s mum Amy is also carrying life, she is 6 months pregnant. Amy is feeling the stress on her pregnant body and could use lots of love and comfort being sent her way to help with the worry, tears, and the stress. To those who have reached out to her directly, she truly appreciates all the kindness you’ve shown. From early mornings to 9pm, she is at the hospital by Odin’s side. As one parent is able to stay at the hospital with Odin, Odin’s dad Chris is able to spend the night. Odin has family with him 24/7.

Chris & Amy would like to acknowledge Grandma Karen for being with siblings William (4), Freya (2) and Stirling (9 months) around the clock so they can be with Odin at the hospital and for her bringing them to the hospital to visit their brother and mum and dad too.

Little sister Freya pictured here with Odin.

Amy shared that her mum’s support has been incredible and although her and Chris may only see the kids for a short while, they are comforted knowing they are taken care of by Grandma Karen and that they are nearby.