DEALT A SHITTY HAND
Donation protected
TANYA VANSANTVOORT
(When everything is working against you)
It was only 25 days, after losing her mother in law, (Louise B Portelance). Only a few days after Christmas. On the morning of January 23rd 2018 it was -9 degrees out. Like the three days prior, Tanya Vansantvoort reported to Health Sciences North ER. Because of her excruciating headaches, were only getting worst. On that morning, which was her fourth visit. The physician taking care of Tanya decided, their last option would be to have a Brain MRI & CT scan performed. Producing detailed imaging of her brain and brain stem. The reason Tanya did four visits before the MRI took place. It’s because they want to make sure every other possibility is eliminated before giving her radiation.
That was when Tanya, found out the worst news of her life. They located, an intra-axial mass the size of a small orange. It had developed in the center of her brain. Which now explained the painful headaches she was experiencing. Brain surgeons in Sudbury and Toronto reviewed the results and decided removal would be to risky and was deemed inoperable. Therefore a Brain Biopsy was scheduled to take place in the following days. Tanya was put on a high dose of steroids. To reduce the swelling from the tumour pushing against healthy brain tissue.
On the morning of January 26th, the Brain Biopsy was successfully performed with no issues. The Biopsy sample was sent to the lab and would take a week for test results. There are 120 types of brain tumors, which most can be successfully treated. By the size and location things were not promising.
On February 7th the results wreleased and it was what we feared most. It was Glioblastoma multiforme, the most aggressive of all forms of cancer. It spreads quickly due to its association with a large network of blood vessels in the brain. These tumors mostly occur in adults between the ages of 45 and 70. Adults between 30 and 40 are at a much lower risk at 5% to 8%. The location of this tumour is at the worst location possible, it is located directly on the midline at the “corpus callosum” a 10cm area consisting of 200-300 million fibres which connects the left and right hemispheres, enabling communication between them. Not only being directly on all the connections, but also when a tumour is located on the midline it essentially creates two tumours, the butterfly effect. This combination is what they call “BUTTERFLY GLIOBLASTOMA OF THE CORPUS CALLOSUM”, it arguably represent the most aggressive and rarest form not only of Glioblastoma Multiforme but cancer itself (worst of the worst of the worst, so we thought) and only occurs on 1.8%-2.8% of all Glioblastoma patients.
At the end of February, Tanya began her first round of aggressive treatment, 6 weeks of Radiotherapy contiguous with 6 weeks of chemotherapy. Tanya completed the 6 weeks and it seemed like the radiation had a great effect, Tanya was feeling really good.
Immediately upon completion of her first round of treatment, we began the immunotherapy treatment in Gatineau. The people at Neuro-Outaouais are amazing people and they treated Tanya with the upmost respect she deserved. Dr Jacques was Tanya’s brain doctor in Gatineau. She couldn’t have a better specialist. An amazing guy with tons of knowledge, he specifically specialized in the exact rare form of cancer she had. The immunotherapy drug Tanya was receiving was “Avelumab”. This medication has received “Orphan Drug Status” which is considered a medical breakthrough for rare diseases. On March 23, 2017, the US FDA granted accelerated approval to avelumab for the treatment of adults and pediatric patients 12 years and older with metastatic Merkel-cell carcinoma which is very aggressive cancer.
The goal here was to get the most of this medicine across the Blood Brain Barrier “BBB” due to administering drugs directly in the head is very dangerous and not attempted by many countries. The BBB is quite simply a barrier that doesn’t allow pathogens, bacteria from your body to cross and only allowing water, gases, and crucial molecules needed to maintain a healthy brain. Some medicine are difficult to get across although they get re-reengineered with molecular Trojan horse delivery systems to access receptor-mediated transport (RMT) systems within the BBB.
Tanya was delivered another blow when she found out her tumour had positive expressions of MGMT which created a drug resistance to the chemo medication (Temodal) only attacking healthy cells. Which is actually not that rare for this type of brain cancer. 30% of all Glioblastoma patients create this resistance. In Australia they don’t even offer the chemo drug if you have high expressions of MGMT.
To drive around planet earth is 40,000km. Tanya did just over 34,000km on highway 17 east from Sudbury to Ottawa and Gatineau. Visiting many near by town and visiting many great attractions that Ottawa and Gatineau has to offer. Anything Tanya wanted she got it. We Brought the kids many times, it created great memories for them and they won’t ever forget it. I wouldn’t change anything it was all worth it.
Early August, Tanya started experiencing severe agonizing back pain and neck pain. Followed with pressure in the head. She began taking steroids again, which she had fully stopped taking for 5 months, due to it blocking the immunotherapy drug. She was getting two pills a week or whenever the pain got unbearable. I kept it to a minimal, so it didn’t affect the immunotherapy. I didn’t want her in pain either, I wanted her comfortable. At the end of August we had an MRI done. The results showed very little tumour growth, which was amazing considering our last MRI was January 23rd. By mid September her back pain had become so intense. I would ask her, what is your pain between 1-10, she would say 11. Tanya had received another very shitty card. She developed what they call spinal drop metastases. Basically the cancer spread to her spinal cord via her spinal fluid. Which is extremely rare for Glioblastoma. It occurs to 1% to 3% of all Glioblastoma patients. But for the combination of tumour location and this spinal metastases it’s safe to say 1%
There are 800 cases of Glioblastoma Multiforme reported in Canada each year. With a population of 36 million. Tanyas tumour is 1%. Making it 1 in 5,000,000 chance making it an ultra rare disease.
“DEALT A SHITTY HAND”
(When everything is working against you)
It was only 25 days, after losing her mother in law, (Louise B Portelance). Only a few days after Christmas. On the morning of January 23rd 2018 it was -9 degrees out. Like the three days prior, Tanya Vansantvoort reported to Health Sciences North ER. Because of her excruciating headaches, were only getting worst. On that morning, which was her fourth visit. The physician taking care of Tanya decided, their last option would be to have a Brain MRI & CT scan performed. Producing detailed imaging of her brain and brain stem. The reason Tanya did four visits before the MRI took place. It’s because they want to make sure every other possibility is eliminated before giving her radiation.
That was when Tanya, found out the worst news of her life. They located, an intra-axial mass the size of a small orange. It had developed in the center of her brain. Which now explained the painful headaches she was experiencing. Brain surgeons in Sudbury and Toronto reviewed the results and decided removal would be to risky and was deemed inoperable. Therefore a Brain Biopsy was scheduled to take place in the following days. Tanya was put on a high dose of steroids. To reduce the swelling from the tumour pushing against healthy brain tissue.On the morning of January 26th, the Brain Biopsy was successfully performed with no issues. The Biopsy sample was sent to the lab and would take a week for test results. There are 120 types of brain tumors, which most can be successfully treated. By the size and location things were not promising.On February 7th the results wreleased and it was what we feared most. It was Glioblastoma multiforme, the most aggressive of all forms of cancer. It spreads quickly due to its association with a large network of blood vessels in the brain. These tumors mostly occur in adults between the ages of 45 and 70. Adults between 30 and 40 are at a much lower risk at 5% to 8%. The location of this tumour is at the worst location possible, it is located directly on the midline at the “corpus callosum” a 10cm area consisting of 200-300 million fibres which connects the left and right hemispheres, enabling communication between them. Not only being directly on all the connections, but also when a tumour is located on the midline it essentially creates two tumours, the butterfly effect. This combination is what they call “BUTTERFLY GLIOBLASTOMA OF THE CORPUS CALLOSUM”, it arguably represent the most aggressive and rarest form not only of Glioblastoma Multiforme but cancer itself (worst of the worst of the worst, so we thought) and only occurs on 1.8%-2.8% of all Glioblastoma patients.
At the end of February, Tanya began her first round of aggressive treatment, 6 weeks of Radiotherapy contiguous with 6 weeks of chemotherapy. Tanya completed the 6 weeks and it seemed like the radiation had a great effect, Tanya was feeling really good.
Immediately upon completion of her first round of treatment, we began the immunotherapy treatment in Gatineau. The people at Neuro-Outaouais are amazing people and they treated Tanya with the upmost respect she deserved. Dr Jacques was Tanya’s brain doctor in Gatineau. She couldn’t have a better specialist. An amazing guy with tons of knowledge, he specifically specialized in the exact rare form of cancer she had. The immunotherapy drug Tanya was receiving was “Avelumab”. This medication has received “Orphan Drug Status” which is considered a medical breakthrough for rare diseases. On March 23, 2017, the US FDA granted accelerated approval to avelumab for the treatment of adults and pediatric patients 12 years and older with metastatic Merkel-cell carcinoma which is very aggressive cancer.
The goal here was to get the most of this medicine across the Blood Brain Barrier “BBB” due to administering drugs directly in the head is very dangerous and not attempted by many countries. The BBB is quite simply a barrier that doesn’t allow pathogens, bacteria from your body to cross and only allowing water, gases, and crucial molecules needed to maintain a healthy brain. Some medicine are difficult to get across although they get re-reengineered with molecular Trojan horse delivery systems to access receptor-mediated transport (RMT) systems within the BBB.
Tanya was delivered another blow when she found out her tumour had positive expressions of MGMT which created a drug resistance to the chemo medication (Temodal) only attacking healthy cells. Which is actually not that rare for this type of brain cancer. 30% of all Glioblastoma patients create this resistance. In Australia they don’t even offer the chemo drug if you have high expressions of MGMT.
To drive around planet earth is 40,000km. Tanya did just over 34,000km on highway 17 east from Sudbury to Ottawa and Gatineau. Visiting many near by town and visiting many great attractions that Ottawa and Gatineau has to offer. Anything Tanya wanted she got it. We Brought the kids many times, it created great memories for them and they won’t ever forget it. I wouldn’t change anything it was all worth it.
Early August, Tanya started experiencing severe agonizing back pain and neck pain. Followed with pressure in the head. She began taking steroids again, which she had fully stopped taking for 5 months, due to it blocking the immunotherapy drug. She was getting two pills a week or whenever the pain got unbearable. I kept it to a minimal, so it didn’t affect the immunotherapy. I didn’t want her in pain either, I wanted her comfortable. At the end of August we had an MRI done. The results showed very little tumour growth, which was amazing considering our last MRI was January 23rd. By mid September her back pain had become so intense. I would ask her, what is your pain between 1-10, she would say 11. Tanya had received another very shitty card. She developed what they call spinal drop metastases. Basically the cancer spread to her spinal cord via her spinal fluid. Which is extremely rare for Glioblastoma. It occurs to 1% to 3% of all Glioblastoma patients. But for the combination of tumour location and this spinal metastases it’s safe to say 1%
There are 800 cases of Glioblastoma Multiforme reported in Canada each year. With a population of 36 million. Tanyas tumour is 1%. Making it 1 in 5,000,000 chance making it an ultra rare disease.
“DEALT A SHITTY HAND”
Organizer
Tanya VanSantvoort
Organizer
Greater Sudbury , ON
