MPNforum Magazine

by Denise Parker

Let me tell you about Jenny…..

‘I have come to order some flowers for Jenny’s birthday’ I said, trying hard for my voice and demeanour not to betray how I felt inside.

‘Purple, pink and glitter?’ said the florist.

I nodded and smiled  ‘Can I order an arrangement for her anniversary also?’

I was touched.  March is a special month to us. It is blessed and cursed. The winds of mid – March brought Jenny to us in 1986, and last wind of March, on the last evening in 2008 carried her away from us.  My love for Jenny knows no barriers of time and space, life or death. I explain to people ‘as you think of your children often, so I think of mine’. I have two children, Robert and Jenny.  They are my pride and joy. I have many reasons to be proud of them, particularly how they fought cancer. Robert had testicular cancer, aged 22. Fortunately he made a full recovery and now has two infant sons. Jenny fought myelofibrosis. She lost the battle.

Life takes us along winding roads, balmy sunny lanes, calm waters, and, into dark corners. Jenny’s journey was pleasant, happy, hopeful, bumpy and short. She travelled a road filled with love, hope, and in her last year, pain, disappointment, and, (Jenny, being Jenny),  plans for a future that she would not accept would never happen. She had as much business being in this world as anyone else. She was not going to lose her place in it without a fight.

Camelot

I am bursting with pride to tell you about our beautiful (inside and out), kind, caring, tenacious, brave and sweet daughter. The (barely) 22 years that she was with us was ‘Camelot’ in the lives of the Percival and Parker families. ‘Camelot’ can never be recaptured, but it can be held dearly by all who encountered it. It can be learnt from and remembered with fondness, and, at times, bewilderment, confusion and disappointment. A holy grail does have a chance of being found in our Camelot. It contains a cure for Myelofibrosis. This is the name of the dragon that slayed our beautiful damsel in distress, Jennifer.

(Jenny would like this comparison, her nickname as a cheerleader for the Widnes Vikings Rugby League team was ‘Princess’). She joked about wanting to live in a castle one day. She inherited her almost Don Quixote – like optimism and zest for life from me. Not even Myelofibrosis will rob me or my family of it.

Our story is one of hope, a legacy left by a young woman whom we watched preciously guarding every breath in her body. Her legacy is still unfolding.

Images of heroines fading away with ‘consumption’ should be consigned to Victorian novels. I cannot get over the fact that in the 21^st Century, we still have diseases that are incurable and take away fit young people.  Jenny succumbed to a modern day ‘consumption’.

Her last control over her life was that it should end in her own living room, and not in the ward where she had spent the last ten months of her life. As I am sitting writing this and watching TV, I am feet away from where she passed in the loving arms of her family.  To my husband, Derek and I, our living room is at one and the same time our sanctuary, and also the place where the biggest trauma of our lives took place.

I picture Derek doing relaxation exercises with Jenny. I remember the pyjama party that Jenny had from Willow Foundation (a charity for young people with serious and terminal illness) four days before she died. She had originally planned to go away for a theatre break with her wonderful boyfriend, Terry, but became too ill. Then she planned a weekend nearer home, again she became too ill. Her friends suggested a pyjama party. This was youth at its most creative.

I am privileged to have met the most amazing young people who loved Jenny.I picture her devoted brother, Robert, and his wife, Helen visiting her.

Jenny (r.) with cousins

Robert, at five years her senior, is testimony of the other side of the coin. This is a reason why we have to count our blessings. One of our children survived, although lightning did, indeed strike twice. I am determined that even if Myelofibrosis is lurking in the DNA of any of our descendants, or relatives, that it will be diagnosed earlier and that the outcome will be better. I pray that the disease will never visit our family again. It casts a shadow, the dragon breaths fire in our direction.

As for me, if I could have swapped places with Jenny at any time during her illness, I would have jumped into the bed and embraced my fate. I begged God to spare her and take me instead. He didn’t!  Now I thank Him for giving me the greatest gift of all, the gift of life. I realise that I have to make the best of my own life. I cannot skulk in a corner or hide under a blanket.  To me, this would be a slap in the face to Jenny. How can I not value with every part of me the very thing that Jenny fought so hard for? It is not always easy. When everyone moans about another cold, rainy summer’s day here in the UK, Jenny would have loved to have been here. I tell her all my news. I bid her ‘Good morning’ and ‘Good night’.  I used to text her phone, but now I only do that on special occasions. (She would have laughed at that).

We live in Widnes, a town near Liverpool, England. How could a girl from such an ordinary place end up with Myelofibrosis diagnosed at the age of 21? We were told it was a one in a million chance.  Along with this, we were told that it would be treated in the same way as Acute Myeloid Leukaemia, with aggression. The snag being, that the treatment in Jenny’s case was ‘experimental’.

A bone marrow transplant was our only hope for Jenny. Her brother was ruled out as a possible donor as he had had cancer. We relied on strangers to save our child. Eventually, the disease took over, and it could not happen. Heroes come in all guises.  Her boyfriend, Terry is one. They had only been going out for nine months when Jenny went into hospital. We couldn’t have blamed him if he had walked away. It goes without saying, that family members are heroic some, more than others. But they all found their inner hero in some way. Colleagues of both Derek and I were supportive. My boss, Grahame continues to show me support. This included my request to be treated as ‘normal’ and to let me know if I ‘lose touch with reality’.

It took five weeks in hospital for Jenny to be diagnosed with myelofibrosis. She was actually relieved that she was ‘getting somewhere’ after almost seven years of sporadic and worsening health problems. Looking back seven years prior to her passing, severe glandular fever at the age of 15 seemed to be the catalyst for this. Jenny was in hospital for weeks with this. The staff on the ward said it was the worst case of glandular fever that they had seen for years. She had complications with it, including bilateral Bell’s Palsy and skin lesions. The Bell’s Palsy mainly disappeared, but the skin lesions did not really go away. It was put down to a reaction of virus and medication. We never really knew. It was decreed that she must be allergic to Penicillin. She never had been previously. I had my doubts.

Jenny’s immune system never seemed the same after the glandular fever. During the next almost seven years, she would see a dermatologist intermittently for skin lesions. Folliculitis was mentioned. As a dance student, the scars on her legs made her very embarrassed. She developed extensive warts on her feet, and a few on her hands and knees. They were seen and treated (in part).  It was not picked up until her final year (that it could be a sign that her immune system was faulty). The sores culminated in two painful and large leg ulcers a year before she died.  It is not ‘normal’ for a young dancer to get leg ulcers. Still I did not feel as if we were really listened to.

In the couple of years following the glandular fever, Jenny developed a severe kidney infection hospitalising her for weeks.  The following year, a cyst was drained. Intermittently, we would see our general practitioners with Jenny having various infections, each treated in isolation. I would start every consultation with ‘She hasn’t been right since she had glandular fever….’ There was only Jenny, myself, and close family putting together a whole picture.

Despite the fact that I am a senior lecturer in mental health (a mental health nurse) and have some knowledge of physical health problems, I felt disempowered and as if I was being judged a ‘pushy. or needy mother. Jenny was a dance student. She was at university. We saw a pattern – if she had a show and rehearsals since the glandular fever, she would perform and then be exhausted, often unwell. This is what Jenny’s life had become like.

We hold no anger towards these doctors that had seen Jenny in primary care. We hold in our hearts the belief that clinicians on the whole try their best. Jenny had lost faith in the medical profession. I had to virtually drag her to the surgery. However, I do believe that a lack of awareness of diseases such as myelofibrosis, and other serious illnesses in young people let Jenny – and us down. I do not want any other family to go through what we went through. Had she been diagnosed earlier, things may have been different. It wasn’t to be. I could not have expected her to be diagnosed in primary care services, but the pieces of the jigsaw were not being put together.

I have so much to say, but I will just make a few more observations. We have to be open to the fact that Jenny’s legacy could contribute towards the evidence base of myelofibrosis care. We were lucky that the team caring for her fought so hard. Her consultant sought advice from top experts in the field. She was given expensive treatment, including Imatinib (Gleevec).

We were all hoping for a bone marrow transplant. There were things that could have contributed to Jenny’s quality of life. She was not with people her own age. She often did not have her own room. She spent most of the time in hospital for the last ten months of her life. I felt as if I had to fight for her to come home with the equipment and dignity that she deserved.

We noticed that some staff  seemed to distance themselves emotionally from Jenny and us when she became terminal. We kept this to ourselves, until other people in the family said the same thing a couple of years following her passing.

We count our blessings. We have the NHS. Once diagnosed, all of the stops were pulled out to save Jenny. She appreciated this. She hardly complained. She was dignified. We spent long hours together. She had to grow up fast. In ten months, we got to know the woman that she had become. She has taught me so much.  She was a philosopher in her own way. She was full of wisdom.

One thing that she felt very strongly about was that most young people don’t know how lucky they are to have their life ahead of them. They should live life to the full. When my sister, Clare looked in the mirror in the hospital room and said ‘Oh look, I have another wrinkle’, Jenny replied ‘I wish that I could live long enough to have my first wrinkle’. Clare was a tower of strength to Jenny and us. She herself is fighting breast cancer at 43. Jenny has been her inspiration. Clare is doing fine.

There were over 400 people at Jenny’s funeral. The police put cones outside the church. I was overwhelmed by this show of love for her. Her friends have kept in touch and showed us such kindness. Derek and I realised early on that Jenny was not just our Jenny, but everybody’s Jenny who loved her. Also, we felt responsibility towards these young people, including her cousins. She was probably the first of their peer group to pass away. How we reacted would impact on them.

A couple of questions swirl through my mind. One is: did glandular fever have a link to Jenny developing myelofibrosis?  ( On my hunch that Jenny may have the virus in her last months, I requested that she be tested for it. She had the Epstein-Barr virus. Had it ever gone away?) The second question that haunts me is that Jenny was born a month before the Chernobyl disaster. Is there a cluster of haematological cancers in our part of Europe in her age group? The other question is that Widnes is a chemical industry town. Until Jenny was two years old, one of the chemicals that Derek came across in his job was Benzene. Perhaps I am clutching at straws. Perhaps it is all in the genes?

Thank you for reading our story. Jenny’s consultant haematologist has let us know that the team are still learning from Jenny’s notes and that she is helping others. This means so much to us. Jenny’s mission in life was to help others. She would be proud. I like to think that she has contributed to finding the ‘holy grail’ of a cure for myelofibrosis.

Take me back to the Contents

© Denise Parker and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Denise Parker and MPNforum.com with appropriate and specific direction to the original content.