It is August 12, 2024 and " we are still in the United States" getting specialized testing that we cannot get in Canada and consulting with some of the worlds foremost specialists in neighboring states like South Carolina, South Florida, and Tennessee prior to making our way back to Canada.  So…OUR JOURNEY CONTINUES and has not ended.  Thank you to everyone for your continued support!  (Please click on UPDATE tab for further info and to see Joey ringing the bell).

3 WAYS TO DONATE: 

1. Donate using the Fundrazr form on the website by following prompts.

2. Send direct INTERAC email transfer to: JoeysJourney@PROTONMAIL.com

3. Donate by cheque to: Kelly Manuel (c/o: Joey),  3-460 19th Avenue NE,   Calgary, Alberta, T2E 1P3

In August of 2023, our son Joey was diagnosed with a rare form of Brain Cancer.  On August 30, 2023, Joey underwent an intensive 7 hour neurosurgery where 15% of his tumor was removed and sent for biopsy.  Joey had 5 titanium plates surgically placed in his cranium.  

It will be shocking for many of our friends to learn about this as we have not up to this point shared openly with many people. As a family, dealing with this has been the hardest experience we have ever faced. We pray everyday for the strength to endure and are thankful for the support and prayers we continue to receive.

Joey's Story:

After suffering constant fevers and severe headaches accompanied by nausea and vomiting over a number of weeks, we were advised that Joey probably caught a virus and was slow to recover from it.  We were not satisfied with this response and advocated voraciously and fought to access a multitude of tests and an MRI.  Never did we ever expect to hear the news that Joey had a brain tumor and that it was wrapped around his pituitary gland and sitting on his optic nerve. 

A week later after meeting with an ophthalmologist we were told that the tumor was severely impacting his eyesight and that if Joey did not get surgery as soon as possible that he would go blind.  After neurosurgery was over, the neurosurgeon advised the tumor was in an impossibly difficult area of his brain to reach; wrapped around the pituitary gland, nerves, capillaries, and veins.  The small removal of a part of the tumor during surgery was enough to relieve pressure on his optic nerves, giving his eyes some relief. 

After the surgery, we quickly learned that the functions of the pituitary gland (sometimes referred to as the master gland for its importance) were also impacted by this tumor. Joey now has Diabetes Insipidus, an uncommon disease that causes the fluids in the body to become out of balance. He also suffers from Adrenal Insufficiency which occurs when the adrenal glands do not make enough of the hormone ‘cortisol’ and requires lifetime supplementation with hydrocortisone daily. Also, his thyroid gland as well as his growth and many other hormones have been affected.

After consulting many brilliant doctors from around the world, trying many different proposed treatments and undergoing advanced genetic testing, we decided to move forward with chemotherapy in December of 2023. It has been a brutally long, hard 6 months and Joey has just finished Cycle 6 of 6 in May 2024 of the chemotherapy protocol; however, he still has a long road ahead.

We have been advised that in addition to chemotherapy, Joey will require Proton Beam Radiation Therapy in Jacksonville Florida, USA.  This therapy starts the beginning of June 2024 and lasts approximately 2 months. 

Proton Beam is a precise targeted radiation therapy that aims to reduce the damage to surrounding healthy tissue which is critical when dealing with the brain. Although Proton Beam therapy has been in wide use since 1975 all over the world, Canada is the only G7 nation that does not have this technology, and as such people in Canada have to leave the country.

It is with mixed emotions that I initiate a fund raising page.  Never in my life would I ever have thought that I would someday be asking for the help of friends and strangers for any type of financial support, as I was not raised that way, and would never usually ask for any sort of help/assistance from anyone. Of course, never in my life would I have ever thought that someday I would have a beautiful 13-year-old son who would be stricken by a very rare type of brain cancer.

Any donation is beyond appreciated and will be put towards expenses that our family has endured and will incur as a result of Joey's illness.

From the bottom of our hearts, we cannot thank you enough. Most of all, we ask that you please pray for our son and all of the other children impacted by this horrendous disease.

3 WAYS TO DONATE:

1. Donate using the Fundrazr form on the website.

2. Send INTERAC email transfer to:  JoeysJourney@PROTONMAIL.com

3. Donate by cheque to:

Kelly Manuel (c/o: Joey)

3-460 19th Avenue NE,

Calgary, Alberta, T2E 1P3