When Toronto Paramedic Rob Ichelson first learned of his sister's diagnosis of a rare cancer, Rob and his family were shocked and heartbroken. What he knew is that the family had to find a way to heal her, but what he didn't yet know is that this plight would transform into a national campaign of awareness, healing and Canadians coming together to provide hope to many who desperately needed it
It began in July 2009 when Shari Ichelson Silverman started to feel unwell.
"She was always healthy, never had any medical problems in her life. This came right out of left field with no warning and after about three weeks of her not feeling well and going to multiple doctors with no diagnosis, really nothing done, one night Shari collapsed at home and her daughter called 9-1-1," Rob recalled.
After being initially admitted into York Central Hospital in Toronto, Shari was first released, and then received a phone call from the doctor asking her to return to the emergency room immediately. She did, and they revealed her diagnosis: Shari had Acute Myeloid Leukemia (AML).
AML is a fast-growing cancer of the blood and bone marrow. In AML, the bone marrow makes many unformed cells called blasts. Blasts normally develop into white blood cells that fight infection. However, the blasts are abnormal in AML. They do not develop and cannot fight infections. The bone marrow may also make abnormal red blood cells and platelets.
The number of abnormal cells (or leukemia cells) grows quickly. They crowd out the normal blood cells and platelets the body needs.
According to the Canadian Cancer Society, an estimated 173,800 new cases of cancer (excluding about 75,500 non-melanoma skin cancers) and 76,200 deaths will occur in Canada in 2010.
Leukemias accounted for approximately three per cent of all new cancer cases diagnosed in Canada in 2001, according to the Public Health Agency of Canada. Incidences of adult forms of leukemia increase significantly with age, specifically after the age of 59, rates doubled in 2001, from about 3.98 out of 100,000 to over six out of 100,000.
Shari's case was quite rare, as she was only 34 years old at the time of diagnosis.
"The next morning (after Shari was diagnosed), I think it was a Monday, she was immediately transferred to Princess Margaret Hospital in downtown Toronto. Thank god she got in there," Rob continued.
Princess Margaret Hospital and its research arm, the Ontario Cancer Institute, have achieved an international reputation as global leaders in the fight against cancer.
"We're very, very blessed that we live in a city that had (such a hospital) and we were able to get Shari in the next day. Her daughter Ashley stayed with my wife and I and our kids. My parents went down with Shari, and at that time they did a whole barrage of tests," Rob said.
After several hours of testing and waiting, the doctors came in and told her that in fact, the initial diagnosis was accurate, and that she did have Acute Myeloid Leukemia.
"They sent her home with some scary advice. They sent her home, and I quote this: 'to get her affairs in order.' That's pretty tough to tell someone. And to be back the Friday morning to likely be admitted into the hospital," Rob said.
After telling the rest of the family what was going on, Shari, along with her parents, went to a lawyer to draw up a Will.
Shari was then admitted into the hospital to begin aggressive chemotherapy.
It was a tough time for the entire family, to say the least, and on one occasion during that time, Shari required resuscitation.
After several months and ultimately three rounds of chemotherapy, the family received some good news. The chemo was working.
"Shari was released from the hospital months later, and in October, they came in and told my family the only chance of survival was a bone marrow stem cell transplant. Without a transplant, the disease would likely reoccur within a year, and had a 100 per cent mortality rate. With a transplant, if they could find a match, they could give her an 85 per cent chance of survival. This was a lot of scary information," Rob remembered.
That's when the family was put in touch with Canadian Blood Services' OneMatch Stem Cell and Marrow Network.
The OneMatch Stem Cell and Marrow Network was originally established as the Unrelated Bone Marrow Donor Registry in 1989, after it was already established that bone marrow stem cell transplants could help treat many illnesses, such as leukemias, lymphomas, myeloma, as well as bone marrow deficiency diseases (thalassemia and sickle cell), Aplastic
Anemia, immune system disorders and metabolic disorders. While donors for patients were at the time from family members, health officials realized that only 25 per cent of patients were able to find a donor from their siblings or other relatives.
The decade that followed saw significant advances in the science of bone marrow transplantation. The number of transplants taking place annually grew to more than 100, and the number of donors on the registry also grew in leaps and bounds.
In 1998, responsibility for the Unrelated Bone Marrow Donor Registry was transferred to Canadian Blood Services. And in 2006, the registry received accreditation through the World Marrow Donor Association (WMDA) the seventh of 62 member registries to achieve this status. The WMDA establishes international standards for the safe collection and transportation of high-quality stem cells to patients globally.
While bone marrow is the home of stem cells, the building blocks of blood, stem cells are also found in the peripheral blood stream and in umbilical cord blood. Thus, Canadian Blood Services renamed the Unrelated Bone Marrow Donor Registry to OneMatch Stem Cell and Marrow Network, and encompasses all types of stem cell transplants, matching unrelated donors to patients all the time.
Currently, in Canada, there are just over 800 people waiting for a transplant.
During the time between when Shari initially found out her diagnosis and the family learned more about her cancer, amidst all the stress, rollercoaster ride of emotion and treatments, Shari had what could be seen as a revelation.
Rob recalls: "Shari turned to my dad and said, ‘Dad, whether I live or die, you have to promise me that no family is going to go through this again. We as a family have to do whatever it takes to increase the number of Canadians and people worldwide on the registry. So that when a doctor comes in and says you need a transplant, the doctor can also say, and we have a match for you.'"
That's when the family started working with OneMatch and found that in Canada, there are 250,000 people on the registry out of a population of 30 million. The family also found out the likelihood of getting a match is very slim.
When an individual joins the OneMatch Stem Cell and Marrow Network, a sample of the registrant's DNA is extracted. This material is used to identify a number of the registrant's
Human Leukocyte Antigens (HLA) which are then stored in the database for patient searches.
HLAs are genetic markers found on the proteins of white blood cells. These markers are inherited from our parents and a number of antigens have been identified as important when matching donor and patient. Obviously, the closer the match between the patient and donor, the better the outcome will be for the patient.
The chances of finding a compatible donor in the family are just shy of 30 per cent.
Sometimes, when a perfectly matched donor cannot be found within a suitable timeframe, the transplant physician will choose to select a "mismatched" donor.
What this means is that a less perfectly matched donor may be selected to provide a donation for a patient, decreasing the effectiveness, but still providing the possibility of healing someone.
Because the more potential donors there are on the registry the more likely it is those who need a transplant will receive it, there is definitely a benefit to attracting more potential donors.
That's when the Ichelson family realized they could help not only Shari, but potentially the hundreds of others on the list.
"We started organizing registration drives in our community. We're Jewish. We went to all the community leaders, the rabbis, the priests, and told them Shari's story. We begged them to tell their (community's members) about Shari's plight and her need for a transplant and to come out to one of the many drives set up in the community," Rob said.
Their efforts snowballed from there. They began setting up drives all across the Greater Toronto Area.
"Our drives became not just focused on Shari, they were focused on getting a match for everybody. We really felt very strongly about what Shari told us."
That's when Shari's Mission began to take shape. Shari's Mission is dedicated to increasing the number of healthy committed Canadians and people worldwide on the registries, as well as to promote better understanding and awareness of what bone marrow and stem cell transplants can do and what AML is.
After the Ichelson's family in Los Angeles also started holding drives, around November the family was given a hint that there may be a match for Shari.
"We didn't know for sure, and we continued plugging away at finding one for Shari in our community," he said.
In December, Rob started the National EMS Stem Cell Challenge. Being a Toronto paramedic who is heavily involved at the association level, it seemed only a natural progression to get the EMS community involved.
"The National EMS Stem Cell Challenge became a natural for me. It just made sense. As a long-term paramedic, one of the things that has always upset me, and I've always been active in EMS in the unions, in promoting the industry, is that paramedics we often don't get involved (in this way)."
The Ichelson family's hope is that EMS professionals across Canada will adopt Shari's Mission as their special cause and become a major force in helping to save lives by promoting the OneMatch Stem Cell and Marrow Registry.
The 2010 National EMS Stem Cell Challenge consisted of inviting every Emergency Medical Service and Dispatch Centre to participate, by holding an internal drive involving their staff, or by opening up their stations during National EMS Week to host swab clinics for their communities. All test kits, shipping, and laboratory costs were to be covered by Canadian Blood Services.
"It's the biggest drive across one country that I know of, and the only EMS-centric event of its kind. It's a lot of work but we're excited about it," Rob said.
The 2010 challenge was a success. Over 180 drives took place by EMS during National EMS week, in nine provinces and two territories. Thousands were added to the registry and the events attracted some great media coverage as well.
"We made the promise to Shari that as a family we would do whatever we could so when we did, we as a family met and we decided that this would become our goal. We knew that
it was going to be big, we just didn't know it would become this big, this fast," he added.
While the family and the EMS community began taking this cause to the next level, a match was found for Shari.
"She had her transplant March 11. We know the match came from overseas. That's all we know. We know somebody, somewhere in the world, went to a registration drive, got swabbed, became a match for Shari and Shari got her gift March 11. It's scary but it's amazing," Rob said.
Shari received the transplant and then was in isolation, as all patients must be in isolation after a transplant for 100 days.
She stayed at home at her parents' house and then was able to finally go home to her daughter.
In the meantime, Rob is creating short and long term goals for Shari's Mission and the EMS community's involvement in stem cell transplant.
Next year he anticipates all 13 provinces and territories will be on board with the challenge. An invitation will go out to services across the Unites States as well.
After that, the world, Rob says. "We think we can do that (spread across the world). We're seeing it here, the response is fantastic. The sky's the limit."
If you have a story about a paramedic or a paramedic's family member who has been through a similar experience as Shari, Rob Ichelson wants to hear about it. Visit www.sharismission.com for details on story submissions and sponsorship opportunities. The website also includes a blog and a link to Shari's Mission Facebook page so you can stay up-to-date on the mission.
Editor's Note: Shari was readmitted into the hospital on June 2, and is currently fighting graft vs. host disease (rejection).
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