Help Jordan Battle Brain Cancer
Jordan Feradi is a 7-year-old boy with a zest for life and a passion for sports. ALL sports. As a member of the Bow Valley Novice Division 1 hockey team, he could take his game to the next level with pure determination and finesse. The same could be said on the ball diamond where Jordan is a natural athlete. Jordan is also one of those kids that coaches and parents dream of. He is kind, energetic, thoughtful and just a terrific kid.
Jordan's life took a cruel twist and
his new journey began in January 2012 with what was originally thought to be side
effects from strep throat. Jordan began having headaches and upset
stomach. His parents said they knew it
was serious when he pulled himself from hockey practice a few times. Following a week of exhaustive testing, cat
scans and MRI's, Jordan was diagnosed with a brainstem glioma (tumor) inside
the pons section of his brain, and it was spreading :: quickly. This kind of tumor
is rare and considered inoperable because of its location and the prognosis for
is generally poor. Jordan's regression was rapid and severe. Within four weeks he went from a kid flying
around the hockey rink dreaming of his next big game to being confined to a
wheelchair with limited motor skills requiring full time assistance with most
of his daily activities.
In Calgary, Jordan's only current
treatment option through the Alberta Health Care System has been radiation and
an experimental study using chemotherapy. Jordan's treatment began March 5,
2012 with 33 radiation treatments at the Tom Baker Cancer Center ending April 19th,
2012. In addition, Jordan was put on a clinical trial at the Alberta Children's
with weekly chemotherapy treatments followed by a 2 month recovery period.
Phase 2 of the clinical trial began on June 4th with daily trips to
the Alberta Children's Hospital for intravenous chemotherapy treatments.
Unfortunately, Jordan has not
tolerated the chemotherapy very well and like so many others, he has suffered
through many side effects that go with the treatment. Despite this Jordan has
maintained a positive outlook and looks forward to being able to play ball and
hockey again with his friends. His parents John & Shawna have been encouraged to consider
Jordan's quality of life when choosing a method of treatment with accepting the condition for what it is and seeking
palliative care being one of them.
Jordan and his parents have chosen to
explore options aimed at fighting this disease while providing a better quality
of life. Recently they learned of a ground breaking new clinical trial being
administered at the Memorial Sloan-Kettering Cancer Center in New York
City. Dr. Mark Souweidane, Director of
Pediatric Neurological Surgery, received FDA approval for a clinical trial for
young patients diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG). A trial
will use novel one-time surgical technique (convection-enhanced delivery, or
CED) to deliver a tumor-fighting agent directly to the site of the glioma, bypassing
the blood-brain barrier that prevents most drugs from reaching these deadly
brain stem cancers in children. In May the first patient, a little 4 year old
girl from Florida underwent a successful surgery. Although the information
hasn't been made public, indications are that the post MRI images are
encouraging.
With the support of the team at
the Alberta Children's Hospital, Jordan applied for and after a visit to New
York for a consultation was accepted into the trial! His surgery is scheduled for
July 17th, 2012. Jordan's parents believe that this form of
treatment gives him his best fighting chance while reducing many of the side
effects that go with chemotherapy. Although the treatment is deemed
experimental and it doesn't improve his prognosis, it is believed that Jordan's
quality of life will be improved dramatically. Bypassing the blood brain
barrier will hopefully shrink the tumor and restore some of Jordan's mobility.
Unfortunately, Alberta Health Care
does not cover the cost of surgery and post-care treatment in New York. Treatment
and travel expenses are estimated to be in excess of $200,000 in addition to any
possible urgent care costs that might arise due to complications during the
trial because Jordan is not eligible for travel insurance.
Jordan will be a pioneer in
pediatric cancer research. Only 12 to 18 children will be accepted into the
trial with the goal that it will become a standard therapy that is more
accessible for future children diagnosed with this horrible disease.
With your support, Jordan's journey represents renewed hope and a departure from the standard, ineffective, therapies. This has the potential to create a whole new paradigm in brain tumor treatment and perhaps down the road a cure for many. Should we exceed our fundraising goals the excess funds will be used to help finance pediatric cancer research. THE FERADI FAMILY SUPPORT GROUP THANKS YOU FOR YOUR GENEROSITY.