Hi, my name is Kasia, and a group of John and John’s wife’s friends have gotten together and decided to put this fundraiser together to help them through this difficult journey they are taking together to fight brain cancer. Here is their story…

John Li celebrated his 39th birthday recently in the hospital, with his wife by his side, while he was having chemotherapy for a rare form of brain cancer. John remained positive even during these hard times because he is an extremely optimistic person and always puts others in front of himself. He remained positive and strong when in early 2025, over the holidays he broke the news to his whole family that he would have to pause his chemotherapy, in order to have a complex high-risk brain surgery. Initially, the surgery seemed to have gone relatively well and when John was finally alert, he asked his wife, “Did the Raptors win?” Unfortunately, there were several complications and a second surgery was necessary, only 12 days later.

John is very slowly recovering, however, the impact of John's condition is causing a devastating financial strain on him and his wife and they really need support! John, who is self-employed, is physically unable to work, and does not qualify for EI. His wife, who can not currently work at all, as John requires 24 hour care and supervision, will soon run out of sick days and will have a significant reduced income. As a result of the illness and recovery process, there have been and will continue to be a variety of out-of-pocket expenses including: medications, assistive medical devices, Cognitive Rehabilitation Therapy, respite services, massage therapy, parking at medical appointments several times per week, as well as, normal daily living expenses. John and his wife have already been through so much since his diagnosis and they will continue to have an extremely difficult road ahead of them. John's prognosis is short and will require much more treatment ahead to enhance his time here and to help with his quality of life. Relieving some of the financial strain will allow John and his wife to focus their energy on each other and their fight against cancer.

John's Story

Before April 22, 2024, John, who was a perfectly healthy and active 38 year old man who enjoyed travelling with his wife and playing sports. On this particular day, John suddenly began vomitting in the bathroom and when his wife went in to check on him, he began to convulse and was bleeding from the mouth. He fell to the floor, hitting the sink and wall on his way down knocking him unconscious. John had experienced his first generalized tonic-clonic seizure (formerly known as “grand mal”). John was rushed to to the ER and several days later, after a multitude of tests and a biopsy, John and his wife received the devastating news that would drastically change the trajectory of their lives. John was diagnosed with a high-risk, low-grade, astrocytoma tumour, a type of brain cancer that, with treatment, typically has an average life expectancy of 5-7 years. Unfortunately, John's astrocytoma has mutated since initial discovery and the most recent test results indicate that he currently has a grade 4 tumor, with a prognosis of 2-4 years.

At the time of diagnosis, John was accompanying his wife abroad for her work. They were expected to come back to their home in Ontario, Canada, in July of 2024. Because of the imminent need for radiation, John began treatment while overseas. While undergoing treatment, John remained resilient and positive, as he continued to stay active and enjoy his time abroad with his wife. Once John completed radiation and regained enough strength to endure the long flight home, John and his wife prepared to fly back to Canada for further evaluation. The days leading up to their return date became a stressful endeavour. Less than 48 hours before the flight, John had another generalized tonic-clonic seizure, where the neurosurgeon recommended not to fly, with a caveat that, no matter which date the flight was moved to, there remained a chance John will have another seizure. John took the chance and they flew as scheduled. He had two focal seizures along the journey, one on the plane and one during a stopover. Upon return to Canada, John continued to have multiple focal seizures per day and a few generalized tonic-clonic seizures as well.

John began chemotherapy soon after arriving home to Canada. He managed to complete 3 of the 6 planned cycles, which were 42 days each, before receiving devastating news. Not only was the chemo ineffective in shrinking the tumour, the tumour was deemed highly aggressive and upgraded to high -grade, as it had continued to grow even throughout treatment. During the holidays, John and his wife were faced with making one of the most difficult decisions of their lives. They needed to decide whether John should under-go a risky major surgery to remove as much of the large tumour as possible. The associated risks with this procedure were high for stroke, coma, memory loss, infections, swelling, and risk of death. John's strength, positivity, resilience, and love for his wife would not allow him to give up, thus he and his wife opted for the surgery. They broke the difficult news to their family in the early new year.

On January 10th, 2025, John spent over 8 hours in the operating room. John had to be fully awake for the procedure as the doctors worked tireslessy to remove as much tumour as possible. After the surgery, he experienced significant swelling, for which he had to be closely monitored in the hospital for several days. John's compassionate and caring nature shined through even post surgery. When recovering in the hospital bed, confused much of the time, he still continued to wish other patients well whenever they would pass by his room. John's concern for his wife also would shine through his confusion, always making sure to check-in with her and how she was coping with everything. John's wife was soon informed that the doctors were not able to get as much of the tumour as they had hoped and the cancer cells were still rapidly growing. As a result, John underwent a second surgery, while awake, on January 22nd, 2025, to remove the rest of the malignant parts of the tumour. During the two complicated and increasingly risky surgeries, that were only 12 days apart, parts of John's frontal lobe, temporal lobe, and insular regions were removed. As a direct result, John is having several neurological side effects including, disorientation, confusion, inability to find words to articulate himself, as well as memory loss and insomnia. Additionally, John experienced a mini-stroke post surgery, resulting in a weakened left side of his body.

John's current state and needs:

John's most recent results indicate that his tumour is now grade 4 and his current life expectancy is 2-4 years. John requires the following:

24/7 supervision:

-John's body is extremely weak and his cognitive function has been significantly altered.

-John is at a high risk for falling, due to decreased motor skills and coordination. John now requires several costly medical devices to assist him in daily self-care and activities.

-He is inattentive to his surroundings, acts impulsively, and severely lacks safety awareness.

-John has not been permitted to drive since his first seizure and therefore relies on his wife for transportation to all medical appointments, in addition to all ‘normal’ household duties and purchases.

-A small group of friends has put together a rotational schedule to assist with picking up groceries, meals, medication, and supplies so that his wife can focus on John's supervision at home.

Medications & Medical Devices/Aids:

-John has experienced several generalized tonic-clonic seizures and was having an average of 2-6 focal seizures per day.

John has many potential triggers for a seizure at any time. The seizures are currently being suppressed with heavy doses of costly medications

-There are out of pocket expenses for these medications, as John's wife's benefit plan does not cover all of his medications, medical equipment/devices, or medical needs.

Chemotherapy:

-Chemotherapy ceased in December of 2024 in order to strengthen John's immune system to fight potential infections to the wounds from the brain surgeries.

-Although a large part of the grade 4 tumour was removed in surgery, there are still mixed grade tumour integrated into John's brain and chemotherapy will be required again to keep the tumour from growing.

-Chemotherapy is expected to resume soon, once John's head opening heals, his immune system is deemed strong enough, and that he is free of infections.

-There will be high out of pocket expenses as John's chemotherapy regimen consists of several costly oral chemo drugs.

Parking fees will continue to accumulate for attending medical appointments for chemotherapy, surgeries, follow-ups, and rehabilitation .

Specialized Diet:

-Due to the rare form of brain cancer, while undergoing chemotherapy, John had to follow a very strict diet.

-All food was required to be extremely fresh to mitigate all risks of infection from bacteria that can grow on aging produce. Additionally, ripening foods produce an amino acid that John's body couldn't break down while on his specific chemo regimen.

-John had to consume his food within 30 minutes of it being cooked and could not eat leftovers, due to risk of bacteria contamination

John tried eating leftovers, and it sent him to the hospital for emergency medical attention.

Even bottled water had to be consumed or disposed of within 4 hours of opening.

-John's wife was required to shop for fresh groceries almost daily for all of the reasons described above, in order to ensure that the produce met quality standards, which was a costly expense. She also had to cook each meal fresh to meet this dietary need.

Fortunately, John's next rounds of chemo will not require this strict diet.

Financial Strain from inability to work:

-John is self-employed as a Registered Massage Therapist (RMT) and therefore does not have his own employer-paid benefits plan or sick-leave.

-John was not working while abroad and was physically unable to work once returning to Canada, and therefore does not qualify for EI.

John's wife is off work indefinitely, has maxed out her leave, and will soon have to take a reduced income in order to continue caring for John, which they cannot afford.

Cognitive Rehabilitation Therapy (CRT):

-CRT is required for John to improve his cognitive skills and re-learn how to perform everyday tasks. For example, John is currently struggling with tasks as ‘simple’ as holding a fork and brushing his teeth.

-John will receive physiotherapy rehabilitation at the hospital, however, he will incur some out of pocket expenses for CRT.

Respite for John's wife:

John and his wife do not have any family closer than a 5 hour drive away. Given that John currently requires 24/7 care, this responsibility is falling solely to his wife.

Access to respite services are available close by, however, these services would be 100% out of pocket for John and his wife.

Massage Therapy:

Due to prolonged inactivity during time in the hospital and recovery at home, John will require a significant amount of massage therapy well above what is covered by his wife's benefit plan.

John has always been extremely kind-hearted, positive, and easy-going. His nature to care for others is evident in his career as an RMT where he would attentively listen to his patients’ concerns in order to provide relief and care for their ailments. John's compassion shines through even during these tough times. Although John may not always remember he even had surgery, he still continues to be polite, have concern for others, and continues to show admiration and love for his wife. He has been a loving and dedicated spouse to his wife since they began dating in November of 2004. This past December, through all of this, they celebrated 12 years of marriage with a special diet dinner at home. Earlier this week, a nurse asked John if he knew what year it was. He did not - he couldn't even guess. However, the next day, on February 12th, John asked his wife if Valentine's Day is coming up. When she told him it's on the 14th, he asked if they could celebrate. Although John regularly experiences episodes of major confusion and greatly struggles with memory, he remembers exactly who the love of his life is and always calls out to her when he wakes up, sometimes because he needs something, and sometimes just to check in on her. Throughout this health crisis and daily struggles, when John is alert, his priority has always been to be a good husband and to try to help his wife out as best as he can with the strength he has. He comforts her and gives her encouragement and supports her when she cries.

Since diagnosis, John has made it very clear that he doesn't want to burden anyone else with his illness. They struggled and resisted asking for help with anything from others up until now. They did not anticipate how difficult this journey would be, and they now realize that this is impossible to do without the support of their loving community. On behalf of John's friends and family, thank you for reading this far. At the very least, if you could share John's story, that would be greatly appreciated. If you are in a position to donate and help with John's financial needs, please know that every little bit helps!!

Thank you!