Support Vivian's Brain Tumour Treatment

August 16, 2024 update:

Thank you!

From the bottom of our hearts, we want to say thank you to everyone who has supported our family (through kind words and/or donations) during such a challenging time.

The support has allowed Kyle and Nicole to take time off from work to be with Vivian, making memories and creating a level of normalcy while also attending various medical appointments and procedures.

Major Update

On August 15th, 2024, we received amazing news that Vivian’s tumour is NOT DIPG, and is instead a low grade glioma known as MYBL1 Fusion.

What does this mean? / next steps

While Vivian does not have DIPG, which is amazing news, she still has a slow growing glioma tumour that is surrounding her brainstem and taking up a large space within her head.

Within the next 2 weeks, Vivian will undergo a procedure to insert a chemotherapy port. From there, she will undergo weekly chemotherapy treatments (for approx a year) under the care of Dr Liana Nobre to hopefully shrink and/or stop the tumour from getting any larger.

While the future is not fully known at this point, the shift in diagnosis is very positive compared to what we were originally told.

Background / How did we get here?

Calling the last couple of months a rollercoaster would be a big understatement.

A few days after receiving the devastating diagnosis of DIPG on June 08, 2024, Kyle and Nicole were brought into a meeting with oncologists and neurosurgeons at the Stollery and informed that a few of Vivian’s symptoms were atypical of DIPG, and left them confused.

From that point, Vivian was being closely monitored for symptom progression, and set up for further diagnostic procedures. On June 13, 2024, she underwent a Lumbar Puncture and liquid biopsy, to see if there were any answers within her cerebral spinal fluid. Samples were sent to Toronto for analysis and results came back almost a month later inconclusive.

In the meantime, Vivian thankfully has been feeling good and there have been no outward signs of disease progression.

While a riskier procedure, to determine a concrete diagnosis, On July 16, 2024, Vivian underwent a biopsy under the expert care of Dr Vivek Mehta at the Stollery. These are the results that were shared on August 15th, that confirmed that the tumour was not DIPG and instead a low grade glioma.

To maintain history, the following was our original GoFundMe description that was based on the initial diagnosis that was given:

On June 8th, our family received heart shattering news that my beautiful and bright 6 year old niece Vivian has been diagnosed with DIPG - the most lethal type of pediatric brain cancer.

I’m reaching out to you today with a heavy heart in support of Vivi and her parents, my brother Kyle and sister-in-law Nicole, to raise funds for the horrifying journey they are forced to embark upon.

All funds raised will directly support Vivi and her family in a number of ways. Funds will go to any specialized care including all expenses related if an opportunity arises to partake in experimental therapies. Funds will also cover any other unforeseen expenses that may arise during this challenging time. In addition, the funds raised will also allow both parents to take time off work to spend with Vivi during treatments. The family hopes to make happy memories during this time; these funds will help them create special moments wherever possible.

Every donation, no matter how small, will make a meaningful difference in Vivi's fight against DIPG. Your generosity will provide us with the resources needed to help alleviate some of the burden on her parents and explore every possible avenue for treatment and quality of life.

Please consider donating and sharing this campaign with your friends, family, and social networks. Together, we can rally around Vivi and her family and show them that they are not alone in this battle.

If you would like to support this cause by providing any kind of special experience for Vivian, other non financial donations to support the family, or means to further our story and raise awareness for this awful disease, please reach out via this Go Fund Me page.

On behalf of the whole family, thank you from the bottom of our hearts for your love, support, and generosity.

Leslie Ostafichuk

About DIPG

DIPG (Diffuse Intrinsic Pontine Glioma) is an aggressive cancerous tumour that develops in the brain stem (pons). This area of the brain controls basic functions: breathing, hearing, talking, vision, and more. DIPG is the most lethal type of pediatric brain cancer with a 0% survival rate and no known effective treatments. This awful disease mainly affects children ages 5 to 10 years old.