FRIDAY, MARCH 31, 2017
GOOD NEWS/ BAD NEWS UPDATE and AN INDEFINITE HOLD OF THE FUNDRAISER
Hi to everyone who has donated to the fundraiser and to those trying to do so now,
First off, thank you all for your amazing support, I am so very grateful. It’s been overwhelming and emotional to see the outpouring of love I have been given by so many.
This update is a bit of a different one, as my circumstances have changed. For the last couple of weeks, I’ve been feeling quite ill and have been in and out of hospital. Which leads me to this good news/bad news update. The bad news is that the cancer has spread and is now in my bone marrow, which was confirmed with a biopsy this week. The good news is that having disease in my marrow has provided my doctors an opportunity to widen the search for more treatment options where as no disease in my marrow meant the trial in Seattle was my last hope.
Today, I was told by my doctors that they were able to secure me a spot in a funded CART Cell trial in Bethesda, Maryland at the National Institute of Health (NIH). This trial is the same type of treatment as the trial in Seattle but I will not have to be responsible for the treatment costs. Because of this, I will be able to go to Bethesda to start treatment right away and I have a tentative start date of April 10th. There will still be costs incurred by me and my family while I am at the NIH for the 6-8 weeks long treatment and I intend to use the money raised to date to fund the expenses for the NIH trial.
I am putting an indefinite hold on the fundraiser for two reasons. One, the money raised so far should cover most of my expenses and there are a couple of fundraisers already started by friends, which will also contribute to my costs. Two, as I've learned time and time again, nothing with cancer is certain. If the treatment in Maryland is not successful in curing the cancer, there is the possibility that I will need to restart the fundraising to be able to do the treatment in Seattle. I am very optimistic that NIH trial is a viable option for me and I look at it as a blessing in disguise in my time of need. The other silver lining is Seattle is no longer a last hope but a Plan B.
If you have any questions or concerns, please do not hesitate to send an email to me at [email protected]
Thank you again for all your support, I am truly grateful.
With Continued Love and Gratitude,
ORIGINAL PLEA (POSTED TUESDAY, MARCH 7, 2017)
Dear family, friends and supporters,
In April 2016 my 28-year-old niece Ann was diagnosed for the fifth time in 17 years with Acute Lymphoblastic Leukemia (ALL). Since the age of 11 she has had chemotherapy, radiation, a matched-unrelated bone marrow transplant and a mastectomy to treat the cancer.
She has been told by her oncologist in Vancouver that they have exhausted all treatment options available in Canada. She is in urgent need of treatment and has been looking for new treatment options in the US.
The good news is that Ann is eligible for a Phase I/II Car T-cell clinical trial currently running at the Seattle Cancer Care Alliance (SCCA). The Car T-cell treatment is a new immunotherapy that has had promising results in treating patients with recurring ALL.
Canadian medical coverage does not extend to clinical trials in the Phase I/II process. This is Ann’s VERY LAST option and the cost of treatment is between $650,000 - $700,000 CAD.
All of us who love Ann know her to be an amazing person. She has lived with her illness with supreme dignity and courage. She never complains! A donation to help her get to Seattle in the next few months could not go to a better cause. Please consider giving what you can to Help Ann Beat Cancer and please let others know about her situation!
Marilyn Ness (Ann’s Aunt)
With your donation to Ann, the secondary contribution to YouCaring is optional, you can edit the amount to $0.
Please make any cheques out to Ann Ness and mail to
PO BOX 20088
Vancouver BC V5Z 0C1
Ann, our beloved daughter, sister, cousin, niece and friend is up against cancer for the FIFTH time and she needs your help! In the spring of 2016, Ann received devastating news. The leukemia she has fearlessly tried to defy returned once again. She has exhausted all viable treatment options available to her in Canada and is now in urgent need of CART cell treatment available in the US
A Lifetime Roller Coaster
At the young age of 11 years old, Ann was first diagnosed with Acute Lymphoblastic Leukemia and in the past 17 years, she has gone through more than most people will go through in a lifetime. Ann has survived:
- countless rounds of chemotherapy and radiation,
- a bone marrow transplant at age 15,
- major hip surgery at age 19,
- and a mastectomy at age 26.
By the time Ann graduated from Brocklehurst Secondary School, in Kamloops BC, she had already overcome cancer twice in her young life. Upon graduation, she was honoured with the Terry Fox Humanitarian Award that recognized her academic, athletic and humanitarian achievements in the face of adversity.
Pay It Forward
Throughout her teen years, Ann became involved with many cancer charities that support youth with cancer. Through her involvement with these charities she was encouraged to give back and donate her time to many health-related organizations. One of the organizations close to her heart is the Canadian Cancer Society and its children's recreational program Camp Goodtimes. It has been through this program that Ann has provided support to youth living with cancer for many years in her young adult life.
A Side Step
At the start of her university studies, Ann celebrated 5 years in remission, only to have it return for a third time. While at Simon Fraser University (SFU), she was diagnosed with leukemia in her right breast. Ann courageously conquered this challenge and charged forward in her education. After completing treatment in 2010, it took no time for Ann to get motivated to get back to her studies and volunteer work. Inspired by her recent treatments to pursue a career in the health field, she eagerly returned to SFU and obtained a Bachelor of Sciences in Health Sciences in 2012.
Living Life to the Fullest
With an ambition to always try new things, Ann worked as a lifeguard after university to save up money to go travel abroad before continuing further education. In the fall of 2013, Ann travelled on her own to Western Australia where she lived on a farm in the small coastal town of Margaret River while working 2 jobs: on a vineyard and in a deli.
Feeling some semblance of a normal life, Ann was completely devastated in early 2014 when she discovered a mass in her breast again. Being on the other side of the world, Ann was faced with the reality of having to leave behind friends and family so she could return to Canada to receive cancer treatment for the fourth time. At this point, her medical team in Vancouver was unsure what treatment options would succeed in finding a cure for her. After more chemotherapy and a mastectomy to her right breast, Ann was back to work and school.
Driven to Help Others
With a large desire to continue to work in the cancer community, Ann became an assistant at the Canadian Cancer Society’s Jean C. Barber Lodge in Vancouver. There she assisted out of town cancer patients needing somewhere to stay throughout their treatments. During her medical treatments as a teenager, Ann stayed at the Ronald McDonald House and used that experience to empathise with the lodge guests. She knew what it was like to be away from the ones you love during treatment and she wanted to make the guests feel comforted while staying at the lodge.
This work fuelled Ann to go back to school and complete her prerequisites for Occupational Therapy. On completion of her courses in spring 2016, Ann was accepted to the Masters of Occupational Therapy Program at Dalhousie University. Sadly, this good news was short-lived as she would find out the cancer had returned only weeks later.
Most Recent Diagnosis
In April 2016, after experiencing a bad cold, Ann noticed some swollen lymph nodes that wouldn't go away. Concerned as to what these symptoms could mean, she visited her oncologist and was told the worse news possible. The cancer was back and this time there were no viable treatment options left for her in Canada. Her doctors explained that her best treatment option was to participate in a clinical trial in the US for a new immunotherapy called CART-Cell therapy. The therapies are brand new but have had exceptional results in treating patients with recurring leukemia.
A New Hope and How You Can Help
In June 2016, Ann was all set to participate in a funded CART-Cell clinical trial on the east coast but unfortunately the trial closed before she had a chance to go. All she could do was wait and hope for another spot in a trial to open. Over the summer and fall of 2016, Ann was given monoclonal antibody, chemotherapy and radiation treatments to keep the cancer at bay but none of these treatments have had the curative effects that she needs.
In March 2017, Ann was accepted into the CART-Cell clinical trial at Fred Hutchinson Cancer Research Centre in Seattle, WA. The treatment has a cost of between $650,000 and $700,000 CAD and this experimental treatment is not covered by the Canadian Medical Services Plan. She will need to come up with the funds for the hospitalization, diagnostic testing and related medical treatment fees.
This is Ann’s ONLY option and she isn’t giving up! Help Ann Beat Cancer by sharing her story and donating. Your donation, big or small, will make a huge difference and can help Ann get the treatment she needs to beat cancer once and for all!
Please help us by donating and sharing her story.
Thank you from the bottom of our hearts in advance!
With Love and Gratitude,
The Ness Family