Arya's Journey - brain cancer at 3 yrs old

Arya’s Journey

Arya is a bright adventurous fun-loving 5-year-old.  But #Arya'sJourney has not been that of a typical 5-year-old.  Shortly after her 3rd birthday, Arya was diagnosed with an aggressive brain tumour – a diagnosis that changed our lives forever.

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While Arya’s initial treatment here at the Alberta Children’s Hospital in Canada kept her cancer stable for 11 months, she then relapsed with metastatic tumours in her brain and spine.  Since June 2018, Arya has had treatment for a further 4 tumours. We are incredibly fortunate that Arya’s quality of life has been fantastic throughout the past year (apart from the regular, sometimes daily, appointments and treatments, which she attends with smile and good spirit!).  Arya has been active and enjoying life – attending kindergarten, gymnastics, swimming, horseback riding, and spending lots of time doing crafts and learning to read and write.

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In the course of these two years since diagnosis, Arya has undergone 5 surgeries, 14 MRI’s, 3 lumbar punctures, 63 rounds of radiation to the brain, 60 rounds of radiation to the spine, and more pokes and follow-up appointments (oncology, psychology, audiology, etc.) than I can count!  And she continues to take it all in stride – what a brave girl!

Why are we seeking funding?

We have not asked for help throughout the last 2 years, as the Canadian Health Care system has taken good care of Arya. Unfortunately, we have now run out of treatment options here in Canada.  There is currently no known chemotherapy that is effective for Arya’s particular type of tumour, and the location of the original tumour in Arya’s brain has been radiated twice, so if her tumour recurs in the same location (which is it likely to do within the next 6 months based on her previous recurrences), there is no further standard-of-care treatment that she can have here in Canada. 
Several months ago, we had Arya’s tumour sample sent to the Terry Fox Profyle study (at BC Children’s Hospital). This clinical trial completed a full genome and transcriptome of her tumour with the goal of identifying promising trials for her specific cancer.  

Based on this information, along with current research findings, discussions with clinical trial investigators, and our desire to maintain Arya’s good quality of life for as long as possible, we have identified two trials that are good matches for her.  The great news is that she has qualified for both trials (based on pathology reports and MRI scans).  The not-so-great news is that neither of these trials are offered in Canada, nor are they funded by Canadian Health Care.  So, the only option for continuing Arya’s treatment is to self-fund.

Pediatric immunotherapy clinical trials

Both of the clinical trials Arya has qualified for are immunotherapy trials.  Given the chemotherapy horror stories we have heard from other families, we are keen and excited to support research and medical advancement in finding an alternative to traditional chemotherapy.  Immunotherapy is blossoming out in early phase clinical trials, and some exciting successes have already been seen.  Given that almost half of all of us will be diagnosed with cancer at some point in our lives, I’m sure many of us would be grateful for immunotherapy to soon find its place in the standard-of-care.  So, this story is not just about Arya, but also about ringing in a new era of cancer treatment. 

We know that early phase trials are abundant, and very few provide ‘cures’; but we are hoping that this treatment may help to extend Arya’s progression-free status so that she can experience many of the milestones she is looking forward to (like losing her first tooth, getting to go to full-day big kids school (grade 1), and being old enough to go to overnight summer camp with her brothers).  And who knows, maybe if she can ride the wave of scientific advancements for long enough, a cure may be just around the corner.  Or better yet, maybe this will be it.  There’s always hope ❤️ 

The two clinical trials Arya has qualified for are a CAR-T cell trial in Seattle, and a T-cell vaccine trial in Washington, DC.  Unfortunately, the CAR-T cell trial is currently waitlisted for children of Arya’s age, and for international patients, so we are pursuing the T-cell vaccine trial first.  We have been in discussion with both trial investigators and have been told that participating in one will not exclude Arya from the other if/when she relapses again.

What does the T-cell vaccine trial involve?
 
The T-cell vaccine trial involves 8 visits to Children’s National Hospital in Washington, DC.  The first two visits will involve blood draws to extract healthy T-cells from Arya.  These cells will be expanded in a lab and ‘trained’ to attack up to 3 different targets on the surface of her cancer cells.  This ‘vaccine’ will then be given to Arya once every 4 weeks for a total of 6 infusions.  MRI’s, monitoring, blood-draws, and physical exams will be done at our home institution in Alberta.

We are seeking support to cover medical fees at Children’s National Hospital, flights, accommodation, and transportation while we are away from home.

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How urgent is Arya’s situation?

Arya’s team is anticipating further tumour growth by Christmas time (based on past relapse times).  The vaccine will also take approximately 8 weeks to create once Arya had completed her two blood draws.  The trial doctor therefore advised acting as quickly as possible so that she will hopefully still be stable when she receives her first two infusions.  

The low risk of side-effects, and appeal of immunotherapeutic approaches, has made this trial attractive to many families. Accordingly, the trial is quite popular, and initial blood-draw spots are already booked into August 2019. Additionally, the hospital requires that we have up-front funding for the full trial before we can begin. Given that we hope to do Arya’s first blood draw in 8 weeks time, we have a very short window in which to complete our first phase of funding (Hospital fees).  Arya urgently needs your help to give her a chance at continuing treatment, and hopefully continuing life!

Thank you all for taking the time to learn about Arya’s Journey.
Please follow her at Arya’s Journey  for regular updates!

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  • Anonymous 
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  • Christy Bost 
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Organizer 

Petra Lynne 
Organizer
Calgary, AB
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