If you are new to our Journey, welcome! If you are an existing Journey fam, thank you for continuing to follow our Journey!
FINALLY a trial has surfaced for DIPG that has reached its phase 2 trial period. This is HUGE news as a phase 2 trial for DIPG is UNHEARD OF! This trial, ONC201, will see us flying to Miami once a month for 2-10 days per trip. We will be headed to the South Miami Hospital with Baptist Health and are currently awaiting an official quote. Based on our research and what Janaya's Oncologists are telling us, we are looking at 6 figures. While the medication is free as the trial is being held by a pharmaceutical company, we will be paying for all hospital bills accrued. The costs we are fundraising to cover include:
- US Hospital Expenses (parking, rooms, doctor fees, blood work, MRI, etc.)
- Transportation (bus, rental car, uber. Whatever is cheapest and more efficient)
- Meals (will cook for ourselves as much as possible)
- Flights from Edmonton, Alberta to Miami, Florida (every 3 weeks. Unfortunately we are tied to a schedule so we will have to pay the rates available)
- Residence (looking for the cheapest accommodations ei. Ronald McDonald House, airBNB, discount hotels, etc.)
- Any other unforeseen costs
I will be setting up a Big Cartel page for some planned t-shirt, car decal, custom plate set and lipstick/perfume fundraising. Thank you in advance for your patience while I set this all up including a further explanation.
See below for back story. You can also visit www.janayasjourney.com
and Janayas Journey
on Facebook (account not required to view page).
On February 1st of 2018, my 9 year old daughter Janaya was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) after experiencing headaches of increased severity over several months. Janaya was also born with Pan-Hypopituitarism and Optic Nerve Hypoplasia, making this diagnosis even more rare as, according to dozens of doctors in varying fields, this if the first ever double-midline-diagnosis containing pre existing Hypopituitarism in global history. She is a genetic phenomena.
Since then, we have devoted our time towards making memories and experience life with her as she was only estimated 9 months to live and the only option was to buy time with Radiation Therapy. Janaya completed 30 rounds of high dose radiation from February 8 to March 26, 2018. She required to be on a steroid, called Dexamethasone, for the entire duration and 1 month post radiation which seen Janaya gain nearly 40lbs within 2 months, making her go from a petite 51lbs to a swollen and impossibly stretched 89.6lbs with 0 height growth.
Fast forward to June 2018, Janaya's tumor shrunk substantially! We were told months to years of life were expected based off of the impressive amount of shrinking the tumor seen.
Unfortunately, that was short lived when only 1.5 months after that conversation, Janaya started experiencing headaches again. We went on Janaya's Children's Wish Trip to Japan in early September, and upon returning another MRI was set up to confirm the tumor wasn't the problem. This, unfortunately, was not the case... The tumor was back already and had grown almost the same size if what it was initially in February and at that point, there was no options available to treatment. She wasn't expected to make it until Christmas... Back on Dex we went and though she lost 22lbs since May, she gained another 12 back bumping her back to 80lbs.
Within the next month, Janaya went to Disney World, graduated high school and celebrated an early Christmas. We prepared for the worst to come :(. In October and early November 2018, we attempted an experimental chemotherapy that proved effective in some other brain cancers. This treatment, however, was proven to not be based on factual evidence and wasn't even held from an actual doctor, rather an assistant to a doctor.. We had fallen for the scam. Thankfully we weren't out much financially as he offered the first month free. Janaya could not keep the formula down and although she did lose all her hair (eyelashes and eyebrows included), we didn't see much other effectiveness of the chemo.
She made it to Christmas <3. She did require a shunt installation surgery as well as a revision in late November/mid December to correct Hydrocephalus as well as had surgery to install an IVAD access point (IV port in your chest connected to a vein running to the heart. Much less painful and traumatic than IV 'fishing' Janaya constantly went through). It was more than I could have asked for, because this also meant that Janaya would be joining a re irradiation trial on Jan 2 2019 to buy even more time! This is the first ever trial for Western Canada (so the doctor says, don't quote me) and FINALLY we could see a light... Janaya is and always has been a strong girl, and this feat would prove no match! Seventeen rounds of re irradiation later, the tumor has shrunk (not the impressive results we seen the first time, but shrinking not the less!!!) and Janaya has been able to stay off of Dex since September and she now weighs in at 59lbs!
This all being said... We require the public's assistance once again. FINALLY a trial has surfaced for DIPG that has reached its phase 2 trial period. This is the first successful phase 2 DIPG specific trial since radiation was found to shrink the tumor a very long time ago. The trial is called ONC201 and will see us flying to Miami once a month for the next foreseeable future.
We have fund raised in order to traveled and experience as much as we could from Janaya's bucket list, which has since been 98% completed! Now let's get Janaya to Miami to give her a 7th chance at life!!!
Honestly, every dollar counts whether it be $3 for bus fair or $5 for food. ANYTHING helps, literally.
We love each and every one of you for continuing to support Janaya in her fight with DIPG.