Ursula's Fight Against Brain Cancer
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Our beautiful 6-year old daughter, Ursula Joy, has just been diagnosed with her second relapse of a rare form of brain cancer. She was initially diagnised in October, 2012, at the age of 18 months, when she underwent massive brain surgery, recovery, 8 rounds of chemotherapy and a stem cell transplant - all to buy
her some time. She relapsed in July, 2015, and had another round of brain surgery, followed by 33 rounds of high-dosage radiation.
Her type of tumor, a Grade 3 anaplastic ependymoma, grows in the cerebral spinal fluid. It is an extremely agreesive brain tumour. Ursula has undergone hundreds of blood transfusions, dozens of MRI's, multiple surgeries including 2 brain surgeries, 3 central lines, and an implanted feeding tube. She has had over a year of tube-feeding due to paralysis of her vocal cords, is deaf in her right ear from surgery, and hard of hearing in the other ear from chemotherapy drugs. She was inpatient at BC Children's hospital for 9 months when she was a baby, and was out-patient at the BC Cancer agency for 3 months during her radiation therapy. She is now a beautiful and wonderful six-year-old, who recently got her first bike (a three-wheeler, due to balance issues), is home schooled and attends both a daycare and kindergarten at the local school. Ursula and her family - mum, dad and two sisters aged 8 and 12 - live in the small community of Hornby Island, BC, and she is extremely well-loved amongst her friends and the community as a whole.
This latest diagosis is, to be honest, tragic. Coming down to Vancouver Children's hospital for a routine MRI, her brain scan last Monday showed tumour growth at the original location, near or on her brain stem. Throughout all of her treatment we have known that the chemotherapy was just to buy time, and that the radation therapy was the cure. We also have been clearly told that as she was subject to such massive radiation treatment it may not be possible to irradiate her tumour again.
There are possibly some treatments available to her - a 3rd round of brain surgery, or perhaps radiation surgery - we meet with he radiologist tomorrow to get her opinion on this - and her case is being discussed tomorrow at a meeting of her oncologist, radiologist and neurosurgeons - but, honestly, we have also been clearly told that any available treatments must be
considered to be Palliative, with the intent to extend what life she has left for her, and are unlikely to cure her.
We are in Vancouver as a family dealing with this horrible situation. We had hoped... but now we are here again. We are supposed to meet with a Palliative care team from Canuck place, who can tend to her when the time comes, be that here or at home.
We, as parents, are devastated and are doing what we can to make her happy. Her sisters are old enough to understand the situation and are also devastated. The emotional toll is incredibly hard. The financial toll on her family has been crippling. But we have stayed together, and we will stay together, and make her life the best that we can, because we all love her so.
We're in Vancouver for the forseeable future. We left home with little funds. Ursula's old donation pages on GoFundMe (from years back) are now defunct as their payment policies have changed, but we have set up this new one.
Michael John Thompson (Ursula's Dad)
May 3rd, 2017.
her some time. She relapsed in July, 2015, and had another round of brain surgery, followed by 33 rounds of high-dosage radiation.
Her type of tumor, a Grade 3 anaplastic ependymoma, grows in the cerebral spinal fluid. It is an extremely agreesive brain tumour. Ursula has undergone hundreds of blood transfusions, dozens of MRI's, multiple surgeries including 2 brain surgeries, 3 central lines, and an implanted feeding tube. She has had over a year of tube-feeding due to paralysis of her vocal cords, is deaf in her right ear from surgery, and hard of hearing in the other ear from chemotherapy drugs. She was inpatient at BC Children's hospital for 9 months when she was a baby, and was out-patient at the BC Cancer agency for 3 months during her radiation therapy. She is now a beautiful and wonderful six-year-old, who recently got her first bike (a three-wheeler, due to balance issues), is home schooled and attends both a daycare and kindergarten at the local school. Ursula and her family - mum, dad and two sisters aged 8 and 12 - live in the small community of Hornby Island, BC, and she is extremely well-loved amongst her friends and the community as a whole.
This latest diagosis is, to be honest, tragic. Coming down to Vancouver Children's hospital for a routine MRI, her brain scan last Monday showed tumour growth at the original location, near or on her brain stem. Throughout all of her treatment we have known that the chemotherapy was just to buy time, and that the radation therapy was the cure. We also have been clearly told that as she was subject to such massive radiation treatment it may not be possible to irradiate her tumour again.
There are possibly some treatments available to her - a 3rd round of brain surgery, or perhaps radiation surgery - we meet with he radiologist tomorrow to get her opinion on this - and her case is being discussed tomorrow at a meeting of her oncologist, radiologist and neurosurgeons - but, honestly, we have also been clearly told that any available treatments must be
considered to be Palliative, with the intent to extend what life she has left for her, and are unlikely to cure her.
We are in Vancouver as a family dealing with this horrible situation. We had hoped... but now we are here again. We are supposed to meet with a Palliative care team from Canuck place, who can tend to her when the time comes, be that here or at home.
We, as parents, are devastated and are doing what we can to make her happy. Her sisters are old enough to understand the situation and are also devastated. The emotional toll is incredibly hard. The financial toll on her family has been crippling. But we have stayed together, and we will stay together, and make her life the best that we can, because we all love her so.
We're in Vancouver for the forseeable future. We left home with little funds. Ursula's old donation pages on GoFundMe (from years back) are now defunct as their payment policies have changed, but we have set up this new one.
Michael John Thompson (Ursula's Dad)
May 3rd, 2017.
Organizer
Ursula Joy
Organizer
Hornby Island, BC
