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Baby Ursula's Brain Cancer- Help Her to Move Home!
$1,120 Raised
11% of $10k goal
15 contributors
3 Years running
Ursula Joy is a 2-year old girl just recovering from chemotherapy and brain surgery from a cancerous brain tumour. She and her family are living in compromised circumstances while trying to get their home ready to move back in. Please help them out! More ...
Ursula Ilien Joy, of Hornby Island, BC, Canada, born April 17th, 2011, was diagnosed with a large, cancerous brain tumour on October 20, 2012, at the age of 18 months. She had been experiencing some nausea, and she was just a bit strangely ill when we decided to take her into the hospital in Victoria BC for a check-up. The day we went into hospital she started having small seizures and she was kept at Victoria General Hospital for several days for tests. On October 24th a cat scan revealed a large tumour and she was airlifted into BC Children's hospital for what turned out to be immediate brain surgery to remove a 4.5 cm anaplastic ependymoma, a World Health Organization Grade Three Malignant and cancerous tumour. The tumour was pressing against her brain stem and was involved with many of her nerves. A team of 15 doctors and observers under the guidance of Dr. Paul Steinbok operated upon her for over 12 hours, the tumour was 99% resected and the operation was a succes.

While she was recovering from surgery, the tumour was biopsied. The severely malignant form of this tumour meant that what had started out as a day trip to hospital turned into an elongated stay at BC Children's Hospital while she underwent 6 rounds of intensive chemotherapy - 5 rounds of high dosage chemo followed by a round of massive dosage chemo with recovery by stem cell transplant. Ursula, her parents Michael John and Ceridwen, and her two sisters Emily and Arwen all stayed in Vancouver for close to 9 months, living in a small apartment while Ursula underwent her treatment. She was released from BC Children's in late May, 2013. her first post chemo MRI was on June 24th, it showed her to be in remission. She has her next MRI on October 2nd, and we pray that the results will be the same.

As a direct result of her surgery, Ursula had a paralyzed right vocal cord and could not eat or drink orally, she spent her entire time in hospital being fed through a tube. She has also experienced significant hearing loss due to nerve damage. Ursula is recovering remarkably, she can now eat and drink whatever she wants, and as for her hearing - time will tell.

What we are dealing with now is a return home - and that is never easy after being away for almost 9 months unexpectedly. While we were gone, our house, which is a beautiful hand-,made house on Hornby island - was unattended. We also did not pack up for an extended trip away from home - we thought we would be gone for a day, and we were gone 9 months. We returned home in early July, but what we were faced with was a house which was not habitable for a child who has a severely compromised immune system from 6 rounds of chemo and a stem cell transplant - nor was it anything which we could deal with under normal circumstances. There had been a rat infestation on Hornby last winter, and rats moved into our house, eating all the nuts which we had just harvested. They made nests under all of our furniture and basically did their best to trash our home. This, combined with some mold issues from lack of proper heating - our house is generally warm and cosy but the main scoure of heat is our wood stove - well, our place needed major work to make it livable.

We arranged to have a trailer rented and we have been living in a small trailer in our yard for the past 2 months - 5 people in a small trailer - while we went to task with renovations. We have had to move everything we own into storage. A local carpenter is working full time with us, on the understanding that his living expenses get paid but that his wages will be dealt with later. We have had to replace all of the carpets in our house, rebuild walls that had rats in the insulation, rebuild our bathroom, and we are now looking at the last stages of renovating the house - we have done a lot, and all on a shoestring - being with a hild in hospital full time when we are self-employed has caused undue financial hardship, and we have been basically living off of donations ever since Ursula's diagnosis.

What we need now is some money to finish off the renovations and buy some things to make the house livable for us and Ursula. We would like to get everything finished off before her next MRI, as if that shows any tumour growth we will be back in for more treatment - and we were never told that chemotherapy was the cure for her cancer, but just a means to delay radiation therapy until she will be old enough for that to be less destructive on her.

We need some money to finish the renovations - to buy supplies and to help pay our carpenter and to pay our bills. We also need to buy a air filtration system to put in the house to ensure that Ursula has clean air in her living environment. We also would like to get our belongings out of storage and back into the house before the winter sets in, as we may be forced to leave again for further treatment any time.

We have not even made it back into our house yet, and it has been almost a year since we left!
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