patients Stories

Ron's Story

My Story of Just Living

“Dad, I’ve got cancer and it’s aggressive.” !!

Whoa! Hang on, this isn’t in the script. I mean, this is my beautiful daughter speaking, 30 years old, mother to a gorgeous little baby, married to a lovely and loved young man, living in their first house, bought only months previously – the Big C has no part in this scenario, no part in my life, my happy retirement, the rest of my life. But that’s not the reality, is it? !!

The reality is that your eldest child has been diagnosed, finally, after weeks of hospital, tests, scans, and pain and upset. She has EHE, a rare type of blood-vessel cancer which affects only a few hundred people world-wide. The diagnosis devastated her, naturally, but it has also devastated me, her mum, her husband, her sister, her world. But most of all, my precious little girl !!

This little article is about how this diagnosis has affected me and how I have tried to cope and move on in this new world I find myself in. But, please, don’t forget that whatever the effect it has had on me, it is nothing compared to the impact it has had on my daughter. And that is really what drives me on, what keeps me going, what motivates me – everything I do, what I think, what I dream of, what I wish for, is based on giving my little girl a life, it is what every parent wants for their children but for me it is, perhaps, it bit more focused, more, how shall I say, real, tangible. Just Live !!

So, this is my journey. But let me say from the outset, from the very beginning, from almost straight after I was told, it is a hopeful journey. I have never wavered in my hope, my determination that my daughter will have a full and varied life !!

So, Day 1, Year 0 of Life #2 – I’m a part-time postman, ex-banker (early retiree), single and relatively comfortable. I’m worried about my No.1 Daughter who has been in hospital for a few weeks following a bout of pneumonia and unexplained pains and an undiagnosed infection. The doctors have been moving her around the hospital depending on what they thought was the source of the problem – first the heart then the liver. She hasn’t been right since the birth of her baby boy and she was finally admitted when the pain got too much and also a blood test showed she had an infection, somewhere. Then she had a series of scans and, following these and a biopsy of a lesion on her liver, she gets called in to see her consultant, and not long after I get the phone-call !!

I don’t remember much of the call except that first bit. There was something about a liver transplant but most of it went in then out. I was halfway through my shift: What do I do? Drop everything and go round? What do I tell work? Where is she? What the **** do I do? I felt so helpless just because I didn’t have an idea of what to do. Up until then I had an answer – here’s some money; I’ll come and pick you up; I’ll fix it; There’s plenty more fish in the sea. But this time, nothing, zilch, how the hell do I know !!

I somehow manage to finish the shift and go round to my daughter’s house. She’s there with her Mum, her in-laws and her husband. All I can do is hug and listen. “What did he say?”; “What is Epithelioid Haemangiothingyme…?”. I eventually get the limited information the consultant gave her: She has multiple tumours in her liver with additional nodules in her lungs: There is a possible treatment option, a liver transplant: My daughters case file will be sent to a centre of excellence based at King’s College, Hospital, London. So we wait for a response and in the meantime.!!

We research. Epithelioid  Haemangioendothelioma – I couldn’t even (still can’t) say it. So we hit the Internet. We glean some information but most of it is thickly medical and difficult to relate to -we know too little about my daughter’s exact diagnosis – there are just too many questions and not enough answers. And then, BINGO! No. 1 Daughter finds the EHE Group on Facebook and suddenly everything changes – now we are not so alone in the sea of EHE – now there are other stories apart from her own – now she can compare notes – now there is the wonderful Jane Gutkovich and others who can help us make a bit of sense of the mad, bad world that has suddenly arisen around me and mine !!

Over the next few weeks we gradually get to understand a bit more about EHE. We learnt that it’s perhaps not all bad news. We learnt that there are some people who have lived with EHE for years, symptom free and with no interventions or medication. It’s as if EHE flares up then goes dormant. Also, some people have had successful liver transplants and some who have had transplants have seen their lung nodules disappear. In other cases, sufferers have been treated with chemo or radiotherapy with some limited success. I latch on to these stories because, to me, they show that there is HOPE. From that first black day, gradually, it seemed to me that there were possibilities, opportunities, developments that could eventually help my little girl. We also learnt of the pioneering work that Dr. Rubin and his team were doing, albeit it was only him and his team – the world of EHE sufferers were looking to this one, small team to come up with all the answers. But hey, one team is better than no team! For me the fog was gradually lifting and it was all due to the Facebook Group. It was literally a lifeline for No. 1 Daughter and her family !!

Another hopeful outcome from joining the Facebook Group was to learn about Professor Judson, a consultant based at the Royal Marsden Hospital, London and someone who was helping a number of England-based EHE patients. He was an acknowledged expert based in the UK and it seemed that he was “plugged into” the EHE Medical Community world-wide !!

As a father you feel helpless in these situations but gradually I learnt, over the following weeks and months that my role in my daughter’s story was to be a father to her, plain and simple. I had to be there for her, support her and help her along the road. I was and am naturally a positive person and I was learning that with every new thing we were finding out, it was adding to the store of good things !!

The next milestone on the journey was the assessment for a liver transplant. This required a three day stay at Kings College Hospital and a battery of tests and scans. I went with her and stayed in the visitors’ hostel. This was definitely a tough time for her. There seemed to be several decision points which had us waiting with real trepidation for the consultants round every morning. Was she physically suitable for a transplant, yes; was a transplant the best option, no – the lung nodules posed a risk; but the good thing to come out of this assessment was that another scan showed that the EHE was not aggressive and the second good thing was that the consultant was happy to refer my daughter to Professor Judson !!

Professor Judson was a revelation. A further scan confirmed that the EHE was not growing and he agreed that the best option was a “Wait and See” approach with regular six-monthly scans to monitor the situation. The decision to not go for a liver transplant was becoming less and less of an issue. We reverted back to all the ‘Wait and See” stories on the Facebook site, successful stories. In subsequent visits we met Dr. Jones, a newly-arrived consultant transferring from Seattle who had actually met Dr. Rubin – wow – and he was a revelation too. He boosted my daughter’s spirits no end with his manner and enthusiasm. So now we are on this long journey of “Just Living” !!

Life is now about getting on with living with EHE but not letting it rule your life. It’s about looking to the future and working towards treatment strategies, medications and yes, cures for this rare condition. It’s about being part of this wonderful supporting EHE community that makes such a difference. I can’t imagine how my daughter would be coping now without it – nor me for that matter. It is such a positive force !!

Like any story, mine is choc full of characters. For my daughter, the characters in the story have helped her in some shape or form to “just live”. The Doctors, the medical staff, the EHE Community, her friends and family have all contributed and they have all helped me too because I can see how my brave girl has been lifted, supported and helped her get her life back.!!