Bone Marrow Is The Gift Of Life

 

 

 

 

Veteran Ric Hall sent us Veteran John Gould’s wonderful story.

 

 

 

 

This story is dedicated to a young woman, Susanne Ruhle, 21 years of age, who was from the German village of Kobern-Gondorf. Sadly she was diagnosed with a rare form of leukemia. All treatments had failed and Susanne’s last resort was to have a successful bone marrow transplant. Every eligible person in her village was tested for Susanne, but unfortunately a suitable match could not be found and Susanne succumbed to the disease Christmas Eve of 2009. Anyone reading this story will not have known Susanne and are asking what does this have to with the RCMP Veterans’ Association? Please read on.

Photograph of Susanne Ruhle.

I first knew Veteran John Gould, Reg # 35693, when we were both stationed, in the early 1990s, at Surrey Detachment. John was on the Serious Crime Section and had a reputation as a bit, maybe more than a bit, of a character.   As things happen in the Force with career changes and transfers our paths did not cross again until last year.

The reason for us meeting again was the Vancouver Division of the RCMP Veterans’ Association in conjunction with the Bruce Denniston Bone Marrow Society were working on putting together an educational video for members of the RCMP on how a simple mouth swab can save a person’s life through a bone marrow transplant. John Gould was a living example of how it can happen. He was diagnosed with an extremely rare form of blood cancer, Waldenstrom’s Macroglobulinemia, which is a treatable but not a curable cancer.  He underwent a bone marrow transplant.

But let John tell his story in his own words.

I was a proud member of the RCMP retiring from Langley Detachment after 27 years in law enforcement. In 2008, due to a back injury at home, I ended up in hospital for a week. During that time, while conducting routine blood work, I was diagnosed with an extremely rare form of blood cancer, Waldenstrom’s Macroglobulinemia, which is a treatable but non-curable cancer.

The disease progressed to the point that I had to start chemotherapy. After 8 rounds of chemo, the disease had advanced to the point where I was given a life expectancy of 3 years. My last resort was a bone marrow transplant.

Your sibling is your closest match as you both share the same DNA as your parents, so my sister, and only sibling, was tested, unfortunately, she was not a match. I was entered into the Canadian Bone Marrow Registry, but again, a match could not be identified.

A friend of mind and former colleague, Assistant Commissioner Wayne Rideout initiated a provincial Force-wide bone marrow drive where members of the RCMP were voluntarily tested in hopes of finding me a match. Unfortunately, a match could not be found. I was then entered into the International Bone Marrow Registry and continued with treatments to slow the progression of the disease in hopes of finding a match in time.

Approximately 4 months later, I was advised by the Vancouver General Hospital (VGH) Bone Marrow Transplant Unit (BMT) that a 9 out of 10 match was found from a donor in West Germany. Since my disease continued to advance, I was advised that they could wait no longer and had to proceed with the transplant.

I entered VGH in September of 2010 for 5 weeks, where I received 8 rounds of “high dose chemotherapy” which killed all the cancer cells in my body. This resulted in losing all of my hair in one day. A “courier” flew to Germany to escort the bone marrow (Stem cells) back to Vancouver, with the “gift of life landing at YVR at 2:00 am September 29th, 2010 and by 2:45 am, I was receiving my life saving transplant.

I was extremely sick following the transplant and for weeks, battled several life threatening viruses. Due to the excellent care I received at VGH, I was released, but continued daily I.V. treatments on an out-patient basis.   I have been back to VGH well over 600 times since my transplant.

 

It’s the attitude one has to undertake when diagnosed with terminal cancer. I have too many people in the world to piss off yet before I check out! – John Gould – Cancer Patient

Approximately 2 years later, I developed another disease called Graft-Versus-Host-Disease (GVHD), which is caused from the rejection of the donor’s and my cells. This can affect different regions of the body and mine affected my eyes, lungs, skin and mouth. The disease caused my tear ducts to dry up, which makes it excruciating to blink; lungs are restricted and likened to a 40-year smoker; saliva dried up causing abscesses and lost my sense of taste. My skin gets rashes and noticeably blotchy. I met one patient in hospital with GVHD to the skin on his face so severe that he was wearing a burn mask.

I have had 5 eye surgeries and currently wear prosthetic lenses developed at the Boston Eye Institute at a cost of $5,000.00. Without these lenses, I cannot see.

Today, 6 ½ years later, my leukemia is in remission, but I still suffer the effects of the GVHD. I take 30 pills a day along with 3 inhalers and attend VGH once a month for I.V. treatments to bolster my compromised immune system. Life is good! Certainly better than the alternative, considering I was given 3 years to live.

In 2014, I wanted to learn the identity of my donor, as this was the person responsible for saving my life. I applied to the Canadian Bone Marrow Registry via the VGH BMT Unit, who contacted the International Bone Marrow Registry, who in turn contacted the German Red Cross. They contacted the donor, advising the Canadian recipient wanted to connect with him/her. I was subsequently provided with this donor’s contact information, including his email after he agreed to the release of his information.

As it turns out my donor, at the time he donated his marrow, was a 19-year-old high school student by the name of Sebastian Obermeier from a small West German village.

Photograph ofSebastian Obermeier provides the Gift of Life.

I sent him a very emotional email, explaining who I was and how grateful I was for what he did for me. Since I didn’t receive a reply, I sent it again a few weeks later, but again no response. Figuring that he may not speak English or perhaps changed his mind about me contacting him, I used Google translate to translate my email to German and sent it, as well as mailed both the English and German versions to the home address I had been provided with.

After hearing nothing for a couple of months, out of the blue, I received an email from Sebastian advising he had not received any of my emails, but fortunately did receive my printed letters in the mail.

We began communicating back and forth by email, then in May of 2016, while back in Ontario for my oldest daughter’s wedding, it struck me that without this “gift of life” from Sebastian, I would not be experiencing the thrill and honor of walking my daughter down the aisle at her wedding. It was then that I decided I wanted to meet this very special person.

I invited Sebastian to Canada and flew him here for the month of July where he stayed with my wife and I. There are no words to accurately describe this wonderful young man. He is now 25 years old, very polite, kind, compassionate and a well grounded individual, who lives in Germany with his parents and younger sister. Truly, a remarkable young man!

Several months before inviting Sebastian to Canada, I was contacted by the RCMP Veterans’ Association advising of their initiative in teaming up with the Bruce Denniston Bone Marrow Society and One Match Blood Services to educate serving members of the RCMP on the importance of becoming bone marrow candidates. Since I was a member of the RCMP Veterans’ Association and a cancer survivor resulting from a bone marrow transplant from an unrelated donor, they asked me if I would share my story for the advancement of their program. Of course I agreed, advising I would do whatever I could to assist in their efforts.

When the Association learned that I was flying Sebastian to BC for a visit, a unanimous decision was made to use this unique meeting to our benefit and produce an educational video for members of the Force. Our initial meeting was recorded by the RCMP Forensic Identification Section at Vancouver International Airport (YVR) upon Sebastian’s arrival. Two further interviews were conducted and taped at the “E” Division RCMP Headquarters, Green Timbers, Surrey. It included interviews with Sebastian and myself, along with the President of the RCMP Veterans’ Association; a Doctor from the Bone Marrow Transplant Unit at VGH; President of the Bruce Denniston Bone Marrow Society and a serving RCMP member, who provided a demonstration on how to provide a simple cheek swab for a DNA sample for testing.

Unbeknownst to me, members of the RCMP Veterans’ Association are bone marrow/stem cell couriers, who receive training, and voluntarily travel all over the world to escort freshly harvested bone marrow/stem cells back to Canada for transplants. They are not paid for their time and it’s strictly done on a voluntary basis.

A bit of background on Sebastian and the reason why he donated his stem cells to a perfect stranger. As mentioned, he’s 25 years old from the West German village of Kobern-Gondorf and is employed as a “food engineer” for a cookie manufacturer. In 2009, the same year I was going through my chemotherapy treatments, a 21-year-old girl named Susanne Ruhle from Sebastian’s village, whom he did not know, was diagnosed with a rare form of leukemia. All treatments to that point had failed and Susanne’s last resort was a successful bone marrow transplant. Every eligible person in the village was tested for Susanne, including Sebastian, but unfortunately a suitable match could not be found and Susanne succumbed to the disease Christmas Eve of 2009.

Fortunately for me, all 1503 samples from Susanne’s drive were entered into the International Bone Marrow Registry. When efforts to find a suitable donor for me in Canada were unsuccessful, my samples were entered into the International Registry and ‘BINGO’ they found me a match!

The next process was the German Red Cross sending Sebastian a letter informing him he was a suitable donor for a cancer patient in Canada and asked him if he would proceed to the next level, which was providing further blood testing and ultimately agree to the harvesting if it was confirmed he was a match. Sebastian, could have at that time, declined figuring he initially provided a sample in hopes of finding Susanne a match, and since he wasn’t, could have decided against the harvest. To the contrary, Sebastian agreed to proceed without hesitation. After meeting with Sebastian and asking him why he did it, he advised that there is no way he could live with himself knowing he could have saved someone’s life and didn’t do anything about it, so his decision to proceed was instantaneous.

The German doctors informed Sebastian there were 2 procedures in which they could harvest is cells:

  1. Be admitted to hospital and go under general anesthetic where they would tap (drill) into his hipbone and withdraw the bone marrow. This procedure is quite invasive and is the method most of society feels is the only way cells can be harvested.
  1. Stem cell collection. This is the least invasive method, which consists of 21 stomach injections over a one-week period and simply having 2 small painless “pokes” in the arms where the cells are collected via I.V.

Understandably, Sebastian opted for “door #2”.

After a match was confirmed, arrangements were then made for the harvesting of Sebastian’s cells and preparing me for the transplant. After a complete physical examination, they sent Sebastian home with “a kit” where he had to inject himself in the stomach 3 times a day for 7 days with a drug that over populates his white blood cell count and releases his bone marrow cells into his blood stream.   During the time Sebastian was undergoing his injections, I had been booked into the isolation ward of Vancouver General Hospital’s Leukemia Bone Marrow Transplant Unit where I was undergoing “high dose chemo” to kill all the cancer cells in my system, rendering me without an immune system.

Sebastian and his mother traveled 4 hours to a main city in Germany where the Red Cross put them up in a hotel. Sebastian attended the hospital where he was connected to an Apheresis Blood Separator, which simply has him with an I.V. needle in each arm, where all of his blood runs through this machine, collecting or “harvesting” the stem cells, then the blood is returned to his body via the other arm. The process took 2 hours and was completely painless. I have a picture of Sebastian donating, while sitting in a hospital chair, listening to his music while giving the “Peace sign”.   Due to our physical size difference, Sebastian had to repeat this process a second time, the next day. Following the ‘harvest’, Sebastian returned to the hotel where he slept for over 10 hours. He was simply given iron supplements to aid in the replenishment of his cells and returned home.

While Sebastian’s cells were being harvested in Germany and while I was being ‘nuked’ in Vancouver, a volunteer “courier” was traveling from Vancouver to Germany specifically for the purpose of taking possession of the freshly harvested stem cells, jumping on a return flight to escort the “gift of life” back to Vancouver, as the shelf life for the cells is 36 hours post harvest.

As mentioned, the courier arrived at YVR at 02:00 and by 02:45, I am having my transplant via I.V. It consisted of 2 bags of blood plasma containing Sebastian’s stem cells. The rest is history!!

The message that we want to get out to the serving members of The Force and to the general public through our awareness video, is that the bone marrow/stem cell collection process IS NOT INVASIVE as it has been perceived in the past. A minor inconvenience and 2 hours of your time to save a life.

Our goal is to get this message out Force wide, where the Force would team up with One Match Blood Services to bolster the Canadian Bone Marrow Registry Bank, then expand our efforts to all Canadian police agencies, fire departments, armed forces, large corporations and the general public.

An update on Sebastian: He went home in August after spending a month with us in the Vancouver area. I took this wonderful young man on a motorcycle trip to the interior; had a tour through the RCMP Air One helicopter hanger and aircraft; a cruise on the RCMP Pacific Coastal Patrol Catamaran “Higgitt”; a meeting with our Police Service Dog section; a visit through the VPD horse stables at Stanley park and tours of Green Timbers RCMP headquarters and Langley Detachment.

The RCMP Veterans’ Association presented Sebastian with a plaque in appreciation for his generosity. I then presented Sebastian with a gift that I held dear to my heart; my Force issued Red Serge and Stetson. He currently has it mounted in a display case on this living room wall at home in Germany.

Sebastian is like a son to us and he thinks of us as his “2nd parents”. We met his family online via Skype for over an hour and they have invited us to their home in Germany. Of course, they have an open invitation here in Canada. Sebastian is already planning another trip to see us this summer.

This heartfelt story would never have been possible had it not been for the unfortunate circumstances surrounding the life battle of Susanne Ruhle, who was taken far too young by this dreaded disease. I plan on writing Susanne’s parents to inform them of our efforts to educate the public here in Canada regarding bone marrow/stem cell awareness and that their daughter’s life has affected people half way around the world, specifically me. Without Susanne, I would not have had the opportunity to walk my daughter down the aisle; witness my son’s wedding nor enjoyed the birth of my two grandsons. I owe my life to this young girl.   I dedicate this drive to Susanne.

On a final note, the trip would not have been complete without taking this young lad out for a Chinese dinner and a “pit stop” for some local entertainment. While on our way to his AirBnB in Kits, I advised him we had to make a quick stop along the way.  He had his window down and as we slowly drove along Hastings Street near Main, I watched his hand slowly move over to the door handle and close his window tight.  So I made a right turn, pulled over and parked in front of …….the No. 5 Orange!

What is a nice German boy doing in Vancouver’s Downtown Eastside?

Thank you for taking time to read my story.

John Gould

Many thanks to John Gould for sharing his story with us and bringing forward an awareness of the importance of providing a simple mouth swab to see if you are a potential bone marrow donor.

 

image of Ric Hall closing block for his Photo Corner webpage

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