Help Ann Beat Cancer!

For: Ann Ness
Vancouver, BC, Canada
Organizer: Marilyn Ness
$35,746
of $700,000 goal.
Raised by 244 donors
5% Complete
This fundraiser is not active at this time.

The Story

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,

Ann



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!

With gratitude,

Marilyn Ness (Ann’s Aunt)


Note:

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Cheque Donations:

Please make any cheques out to Ann Ness and mail to

PO BOX 20088

Vancouver BC V5Z 0C1



Her Story

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

Fundraiser Updates

Posted on May 5, 2017

Posted on May 5, 2017

FINAL COUNTDOWN TO CAR T-CELL INFUSION


Here is my latest update as I approach the final countdown towards my planned infusion of the modified T-cells (CAR T-cells) on Wednesday. The T-cells I had harvested two weeks ago went into the lab to be modified on Monday and I hope to find out this Monday whether they are being successfully engineered into the CAR T-cells. I am glad that my mom and I have stayed at the NIH during this time as I have needed more medical attention than I initially expected.


I have now been at the NIH for over three weeks but it feels like it has been a lot longer. The waiting process is always the hardest part. I have not been feeling well over the past week as I spiked a fever and needed to be admitted for a couple nights to receive IV antibiotics. Also, the chemo I was given two weeks ago caused my blood counts to decrease and I have needed several blood transfusions. If you are willing and able, please consider donating blood as I know first-hand the difference it can make.


Yesterday, I had another bone marrow biopsy. The CD 22 is the specific marker on the cancer cells that my CAR T-cells will target. The first week I was here I had a bone marrow biopsy to measure the extent of the disease I had and to see how prevalent the CD 22 markers were in my blood and bone marrow.  I had 99% of the blasts (cancer cells) in my peripheral blood express the CD 22 marker but only 92% of the blasts in my marrow were positive for the marker. The doctors did not seem too concerned but I am hoping this second biopsy will show a greater percentage in my marrow.


It has not been just tests and procedures though. Last Wednesday, my mom and I had the opportunity to visit the National Mall in Washington, DC. Downtown Washington is approximately 40 minutes away from the NIH and the Children’s Inn periodically has a shuttle for the families to go travel to the monuments. We did not have a lot of time but we managed to catch a glimpse of the White House. From there we walked along the reflecting pool and checked out the Washington, World War II and Lincoln Memorials. My mom is always watching the news so I know she took pleasure in being able to see the monuments and buildings that are regularly shown on the news.


As always, I am grateful for the continued support I have gotten from everyone. I have been bad about responding to emails and texts in the past week while I have not been feeling well but my focus has been resting as much as possible. Hopefully this update can let everyone know where I am at right now. Please continue to send well wishes and once I am feeling better I will do my best to try and respond. As always you can always email me at [email protected].


With Continued Love and Gratitude,


Ann :)



Posted on April 23, 2017

Posted on April 23, 2017

T-CELL HARVEST AND THE PLAN MOVING FORWARD

I had another hectic week but things are moving along with a few hiccups that are being taken care of. In my last update, I mentioned I would have my T-cells harvested through apheresis and I had that done successfully on Tuesday. These cells will now go to a lab to be engineered to find a marker on the leukemia cells. If the T-cells are successfully engineered, I will have them reinfused into my body on May 10th. In the meantime, I had been hoping to go home but because of the amount of disease I have, the doctors feel it is best I stay here to receive some chemo before the infusion. I am sad that I will not have the chance to go home but I would rather be safe than sorry.


I had hope to post this update midweek but last week was as crazy as the week before. On Monday, I had an MRI, an ophthalmology appointment, a pre-apheresis clinic and I finally signed the dotted line agreeing to receive the CAR T-cells! It was also discovered from my blood tests that day that my platelets were low. For the apheresis, I had to have a temporary venous line put in so not being able to clot well due to a low platelet count was going to be a problem. Monday night, I ended up being admitted and received a platelet transfusion overnight so that I would be ready for Tuesday.


First thing Tuesday morning I had the venous line put in. I have had so many lines and trouble with lines over the years that the doctors had to put this line in through my femoral vein as opposed to putting it through a vein in my upper body. So, for most of Tuesday I awkwardly had tubes hanging out at the side of my groin. The line insertion went well though and right after that I was taken to the apheresis clinic to start the T-cell harvest. The whole process took nearly five hours. The line I had was a double lumen so that my whole blood was extracted from my body and travelled through one lumen to a centrifuge where it was separated into the plasma, red blood cells and lymphocytes (T-cells). The lymphocytes went into a bag and the plasma and red blood cells were reinfused to my body through the second lumen. The process was not painful at all, essentially I just sat in a hospital bed the whole time.


As I mentioned earlier, my initial plan had been to come home after the cell harvest if I was feeling okay and then come back down early May with my mom when the CAR T-cells are ready, but because of the change in plan my mom flew down on Friday. I had chemo on Wednesday and have already started feeling the effects of the treatment so having her here now as my support has been amazing. I had been so busy the week before that I didn’t have time to miss anyone but when she arrived I was so grateful to have a loved one by my side. I realize I am sometimes too independent for my own good, but I will always want my mom!


I have two more weeks before anything major happens again. In that time, I need to stay out of trouble and lay low. I will be monitored closely by my medical team and I plan to rest as much as possible. I am grateful for the emails and best wishes I have received and please do not hesitate to send an email to me at [email protected] and I will do my best to get back to you if I am feeling okay.


With Continued Love and Gratitude,


Ann :)



Posted on April 16, 2017

Posted on April 16, 2017

HAPPY EASTER AND MY FIRST WEEK AT THE NIH

Happy Easter Weekend! I finally have a break to update everyone on where I am at. Last weekend I flew to Bethesda, Maryland to start the process of determining my participation in the CAR T-cell treatment clinical trial at the National Institutes of Health (NIH). This past week was a barrage of scans, tests, paperwork and information overload. All very over-whelming and stressing but at the same time exciting and promising.

In a five-day span, I had a bone marrow biopsy, a lumbar puncture, an echocardiogram, an EKG, a pulmonary functions test, a PET scan, two CT scans, a chest ultrasound, an IV-Immunoglobulin infusion and a lot of blood drawn. I am physically and mentally exhausted from it all but from these tests and scans its been determined that I am eligible and fit to participate in the trial. I have a few more tests to go through and I will need another central line put in but then the next step will be to harvest my T-cells through apheresis.

These T-cells will then be genetically modified into the CAR T-cells and given a chance to multiply before being reinfused back into me. If all this works, the CAR T-cells will identify a unique marker (CD-22) on the leukemia cells and destroy the cancer. I may not become a superhero but this is the closest thing to developing “self-healing” powers that I have ever experienced. I really, really hope this works!

One of the questions I have been asked by friends and family is what the care and facilities are like here at the NIH. I realize I am at a federally-run health agency in a clinical trial so it may be different at other American care facilities but so far I have been blown away by the efficiency and attentiveness of my medical team. My clinical trial nurse had a schedule all laid out for me when I arrived and the attending and fellow oncologists overseeing the study have been super thorough in describing to me what is involved in the treatment.

At 28, I am the first one to admit I still look like a teenager, so the fact I am in a pediatric oncology trial isn’t a far stretch from the imagination. One of the perks of being a pediatric patient is the accommodation. I just manage to sneak under the 30 years patient age limit for those allowed to stay at the Children’s Inn. It is much like the Ronald McDonald House that serves out of town families needing treatment at BC Children’s Hospital and its only a 2-minute walk to the NIH. The Inn can house 60 families and there are families from all over the world here. I just have to turn a corner in this place and there is a little kid speaking a foreign language!

The T-cell harvest is planned for Tuesday, April 18 and then it takes about two week for the T-cells to be modified and given a chance to multiply. In that time, I may go back to Vancouver but it will all depend on my health status Tuesday. The PET scan results revealed the extent of the cancer and beyond the cancer in my marrow, I have noticeable leukemia lesions in my parotid glands, lymph nodes in my neck, my right armpit and in my pancreas. Again, one never wants to hear she has more cancer but because of this spreading I became eligible for this trial so yet another dark and twisted silver lining. I try to do the one-thing-at-a-time approach but I am very anxious and excited for the actual treatment to begin!

Again, I apologize for my “essay updates” but I am finding just unbottling everything that’s happened to me in the past week the most cathartic way for me to keep my friends, family and those supporting me posted. I hope to post something mid next week as at that point I will hopefully have had my T-cells harvested and then I will know if I am to return to Canada before the CAR T-cell infusion in early May.   

As always, please do not hesitate to send an email to me at [email protected] and I will do my best to get back to you if I am feeling okay.

With Continued Love and Gratitude,

Ann :)

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