The summit of life

A mountain in the far-off Pyrenees provided hope, inspiration and drive for a critically ill leukaemia patient in Sydney.

61-yr-old cycling enthusiast Paul Seshold cycled up the 2115m [6939 ft] Col du Tourmalet in 2011 with his son Oliver following a route frequently used in the world-famous Tour de France.

The Paddington-based Seshold is a very keen cyclist in his home city of Sydney, getting on his bike 2-3 times each week and thinking nothing of a 120km spin on a Sunday.

Almost three years ago, Seshold who runs an industrial minerals business, started experiencing bouts of tiredness which often had him leaving his office uncharacteristically early. He developed boils and mouth ulcers which in spite of prescribed antibiotics did not clear up.

One Sunday in 2012, UK-born Seshold drove with his bike firmly attached to his car to the picturesque Bobbin Head area in the northern area of Sydney to join a cycling friend for a regular outing. But the superfit Seshold had covered only 10kms when he told his friend that he did not have the energy to complete the planned route and headed home. He told J-Wire: “I had never done that before.”

The following morning, Paul Seshold visited his GP who ordered blood tests. That afternoon he received a call from his doctor who said: “I hate to tell you this but you’ve got Leukemia”.  Seshold added: “He told me I had to go St Vincent’s hospital first thing the next day. It was a bolt from the blue. I was in tears when I rang my wife and my son. The results were based on a blood test and at that time I had no idea how severe the disease was.”

Scold continued: “I love music and we go to concerts a lot and I like the violin in particular. A wonderful violinist Anne-Sophie Mutter was appearing that week at the Opera House for the first time. I had bought tickets nine months before as soon as her appearance was announced. The concert was scheduled two days after my admission. I told the medical team that I assumed they could get whatever was wrong with me fixed up over the next couple of days explaining that  I had tickets for a concert I could not miss. I also had the opera on the harbour and I thought they might be able to give me treatment around these events. But it was not to be. I found myself in the Haematology ward and the treatment procedures were explained to me. There was a lot of information to absorb. I was desperately sick.  Tests showed that I had a severe form of leukaemia…masked because of my fitness.”

Seshold received standard treatment  Intense 24-hour  chemotherapy for seven days and was in hospital for a month. He said: “It was hugely debilitating. My son arrived from Germany and friends were magnificent in terms of support and compassion.”

Paul Seshold’s immune system showed signs of life following the intense chemotherapy and he was allowed to return to his home within walking distance of the hospital. His wife Elizabeth abandoned her work to look after ailing husband who found it difficult to muster any strength at all.

It was at that time when Paul Seshold told his wife that he wanted to get better and that one day he wanted to ride his bike up the Col de Tourmalet in the Pyrenees once again. He said:  “I had ridden it twice  before, the first time by myself  and the second time with a very good friend   The mountains in that region are all very tough. They are all high…but this was the one I picked to ride. That was to be my goal. When you reach the summit there is a statue of a cyclist on his bike and the look of agony and the elation of conquering the difficult is so apparent. I had seen it twice before   A few days after I had been in hospital I told my wife this is what I wanted to do. This dream stayed with me a lot but sometimes I pushed it aside because the treatments were so debilitating Then came more rounds of chemo. On one occasion when I was home my wife went out.  After half an hour later my temperature rose. I felt things were going wrong so I took myself to the emergency unit at St Vincent’s. I have a frequent illness card!  Elizabeth did nit return to work for the duration of my illness. We were inseparable.”

Music-loving Seshold added: “I couldn’t listen to much music…I just keep drifting off.”

Medical treatment including the chemotherapy kept Paul Seshold’s acute myeloid leukaemia under control but it was not a long-term solution. His doctor suggested a bone marrow transplant.

Scold explains: “I was missing genetic markers. Over the age of  60 it is not common to have an unrelated transplant.  I was putting all the information into my notebooks and  I had a decision tree and none of the survival prospects looked good.”

Things were not getting better for Paul Seshold. His doctor was unsure whether a transplant would be in his best interest. He told J-Wire: “My wife Elizabeth and my son Oliver became a team and we made the key decisions.”

Jotting everything down in his notebook he added: “My analysis was a major factor.  We agreed that if a match could be found that’s what we do. I checked with my sister Marilyn in South Africa but she was not a match. Four months later  I went into the third round of chemo – this time ten times the strength of the first round.”

For someone who could cycle up a mountain  in the Pyrenees, shuffling round the block in Paddington proved difficult.

His team struck gold. Three matches…one through Gift of Life one in the US and one in Germany. The Gift of Life was the best match.  Gift of Life’s Shula Endre-Walder said: “If Paul had had a twin brother that would be a perfect match. But he doesn’t.  So they cross-matched the stem cells with the potential donors  and found a suitable match in the USA through the Gift of Life Registry.”

Paul Seshold had no idea about the identity of the donor who would save his life. He said: “Everything was anonymous. I knew the match was male and 21 and lived in America. But the identity is protected.  The testing is done using DNA. The data they check may be called 7/10 but in fact there are over 10,000 factors which need to be matched.  A date was set and the complex arrangements were made.”

Paul’s preparation took six days which he did at home because of his proximity to the hospital,

On September 14, 2012Paul Seshold received his transplant. During the days leading up to the procedure his immune system had to be reduced to zero. He explains: “The process  is to completely replace your immune system so the timing is important. The biggest worry about having the transplant was graft v host disease. The graft is the new immune system and I am the host. The new immune system is only genetically matched in a partial match.

The first 100 days is a very high risk period. Only 12.5% die in those first 100 days. Your new immune system works out you are a foreigner and a good system will attack the host. Graft v host will attack your organs and can kill you.  There was a clinical trial of a treatment being used in organ transplant and in certain places used for bone marrow to reduce the graft host attack. It was a Canadian trial with 105 recruits and I was chosen. The nature of the trial was that 50% of participants get placebos. There was a risk but we adopted our team approach. A key risk is catching a virus which in turn leads to a lymphoma…but the risk was modest. Graft v host disease is potentially unpleasant.”

Following the transplant it was another three weeks in hospital for Paul Seshold and then constant monitoring. He told J-Wire that he visited St Vincent’s so often “you could almost see the footprints in the pavement.”

In late October 2012  Paul Seshold’s energy levels returned following chemo. He said: “I got back on my bike and went slowly around the Centennial Park.  There’s nothing like being normal.”

But he remained aware of the risks and was wary of even people near him coughing. He continued: “In January 2013, we went on holiday to Tasmania where I lost my hearing in one ear. I had developed a tumour at the back of my throat…t was lymphoma.  It was a result of the risk I had taken. Then I started another series of treatments. I didn’t feel as rotten with this post transplant lymphatic disorder..a result of the Canadian clinical trial.

He was treated with monoclonal antibodies which attacked the tumour and destroyed it.  I had another series of scans. Things had improved but the cancer was not eliminated. You feel like you’ve been battered. I had not last track of my vision of riding my mike up the mountain thinking to myself “I’m going to do this”.

Paul Seshold told J-Wire: “I had to defer for a year the dream to climb the mountain and I thought we could use this time wisely so I formed the Lifecycling organisation to ride up the Col de Tourmelet.

We were going to do this to raise awareness and money for charity. This would be a real sign of recovery,

Elizabeth had never done anything like this before. So I set off with my wife, my son a cycling mate from Sydney and one form the UK. We set a date and raised funds. The money was split between bone  marrow transplant foundation and the leukemia foundation.”

On June 23, 2014 Paul Seshold and his team rode up that mountain. He said: “It was magnificent. Everything about it was perfect  even the atrocious weather of the previous night cleared up. It was a long hard slog but we got up there and cycled past that statue and celebrated. The weight that fell away from my shoulders was unimaginably huge. There had been times when I wasn’t sure that I could do it.

Paul Seshold’s team’s efforts raised $192,000 for their two charities.

But one piece of the jigsaw remained unplaced. Paul Seshold always wanted to meet his donor.

He explained: “During the first two years you are not allowed to know each other. You are allowed to communicate anonymously. I wrote to him soon after the transplant and he responded.  I wrote several times and I didn’t receive any response.

I would send brief notes from time to time giving good news. When we got to the two-year mark I signed a release form..and to my surprise so did he. I was in Hong Kong when I got his details and the address was in Israel. I phoned Elizabeth and told her I was going to Israel, But I didn’t go. Just as well as he had gone back to the States.”

Paul said: “I was delighted when I heard he wanted to establish contact. I emailed him and got a speedy reply, We have been communicating since October and we both wanted to meet each other. In Early next month Elizabeth and I are off to America and are scheduled to meet my donor in Chicago. We have not sent photographs. Nor have we Skyped. I just want to meet him..a moment I want to savour.”

I want to shake his hand and a whole heap more….

Shula Endrey-Walder said directly to Paul: “You are an inspiration”. The Gift of Life is hosting donor sessions:

Sydney March 22 Wolper Hospital 11:00am to 3:00pm  Tel: 0414 780 444

Melbourne March 24 Caulfield Blood Donor Centre Tel: 4:30pm to 7pm  Tel: 0414 780 444

As for missing the Anne-Sophie Mutter concert Paul Seshold missed…well the famed violinist is on her way back to Australia later this year and will perform with the Sydney Symphony Orchestra at the Sydney Opera House.

Paul Seshold has already bought his tickets,