Cancer In Young Adults ... Through Parents’ Eyes

Narratives & Stories

Ruth's story

Ruth was a 14 year old school girl when a rare lymphoma was diagnosed. Her mother wrote the following account of her feelings about Ruth’s illness for a cancer support journal.

A Mother’s Cancer Journey

“Do not hesitate to love and to love deeply…..The pain
that comes from deep love makes your love ever more
fruitful…Those you have loved become part of you…”
(Henri Nouwen)

In the early hours of the morning on Wednesday, 18th September, 1986, Paul, my husband, and I truly rejoiced as we held our new born daughter, Ruth, in our arms for the first time. The long and painful hours of labour were forgotten as we thanked God for this precious new life which had been entrusted into our love and care. As we watched the sunrise through the hospital window, it felt as if nothing could take away the joy and wonder in our hearts.

Fourteen years later, in the dark of night in June 2001, I gently held Ruth’s hand as I watched powerful, yet highly toxic, chemotherapy drugs being infused into the veins of her emaciated body and I prayed that I would not have to go through premature labour pains of birthing her into eternal life! As I prayed, tears trickled down my cheeks and, from the depths of my pain and powerlessness, I cried out to God that I just wanted to make her better. It was as if He came and stood by the bedside and looked at both Ruth and myself with eyes full of compassion and said, quite clearly: ‘You can’t. All you can do is love her.’

Less than a week prior to this, Ruth had been diagnosed with a rare form of very aggressive lymphoma – Anaplastic Large Cell Lymphoma – which, by the time it was diagnosed, had spread to her lungs, skin and bone marrow. We had been told that unless she began a harsh course of intensive chemotherapy as soon as possible, her chances of survival were slim. The ‘Cancer Journey’ had begun!

The diagnosis of Lymphoma which was to have such a drastic effect not only on Ruth but also on the rest of the family, came after a month of uncertainty – most of which Ruth had spent in hospital first in Lancaster and then in Booth Hall Children’s Hospital in Manchester. Initially, it had been thought that Ruth had Glandular Fever but within a very short time of her first becoming ill, her symptoms became so widespread and severe that it was obvious that she was suffering from something far more serious. Her temperature spiked several times a day at over 40 C, her throat was so ulcerated that it was becoming impossible for her to swallow, strange lesions appeared on her feet and ankles, her prolactin levels soared, she developed a cough and started to cough up blood, scans showed fluid on her abdomen and numerous enlarged lymph nodes. By the time that Ruth was transferred to Manchester, she had undergone so many blood tests that her veins were beginning to collapse and access to them became almost impossible – not to say painful! Paul and myself took it in turns to be at her bedside and John, our eldest son, visited every day sponging her down when her temperature spiked and attempting to keep us all positive and smiling! By this time, Ruth could only speak in a whisper and was too weak to walk more than a few steps. Her biggest treat was when her dad took her outside in a wheelchair so that she could experience the fresh air and sunshine. Some evenings, when we helped her to have a bath, she would gaze longingly out of the bathroom window at the car park, wishing, she later told us, that she could be whisked away home in one of the parked cars!

As the days went by, there still seemed to be no clear reason for all Ruth’s progressively worsening symptoms. One very sympathetic registrar, kept telling us how he wished that they could just start her on a course of steroids as that would alleviate some of the most distressing symptoms – but to do so could also mask the underlying cause. By this time, Ruth was on intravenous antibiotics (for the second time) and also on a saline drip as she had developed severe gastrointestinal problems. Further MRI and ultra-sound scans revealed that more and more internal organs had been affected. A severe viral infection was now suspected. During the course of one ultra-sound scan, the word ‘lymphoma’ was used and I remained behind to ask the consultant radiologist whether or not this was what they suspected. He assured me that he had ‘scanned hundreds of children with lymphoma and this was definitely not presenting as lymphoma’! Two days later, Ruth was finally scheduled to have the biopsies which we had originally been told by her consultant in Lancaster, were needed in order to make a diagnosis.

As Ruth was wheeled into the operating theatre, one of the doctors present followed us out and introduced himself to us as Dr Rob Wynn, a Consultant Haematologist who was there to carry out a bone marrow biopsy. Little did we know then how important a figure he was going to be for Ruth and for us all!

Late the following afternoon, Dr Wynn came to see Ruth and told us that the preliminary results of the biopsies showed that she had developed Haemophagocytic Lymphohistiocytosis (HLH) – a rare condition of the bone marrow. However, before treatment could commence, he told us that it was vital to find out what had triggered the condition and for this we had to await the full results of the bone marrow biopsy. That night, I was staying with Ruth and the ward sister asked if I would like to speak to one of the registrars who could explain to me in more detail about HLH. And so, in the middle of the night, I sat and listened as a young doctor told me that HLH was incurable and that ‘if’ Ruth survived, she would have an extremely poor quality of life and be severely affected physically, mentally and neurologically. When I mentioned that Ruth was a very talented young flautist, she looked aghast and told me that ‘if’ Ruth survived, she would definitely never play the flute again! The picture that she painted was so bleak that I actually prayed that if this were the case, God would take Ruth now and spare her such a life of suffering!

Two days later, Paul and I were called in to speak to the consultant whom Ruth was under at Booth Hall Hospital to be given the full results of the biopsies. The HLH, we were told, had been triggered by a form of lymphoma. In a state of shock, I asked did this mean ‘cancer’ but was told that they didn’t like to use this word – as if this could in some way take away the devastating nature of the news they were imparting! The nurse who came with us to tell Ruth about the diagnosis began by asking her what she knew about cancer. Ruth simply replied: “You lose your hair”! Little were any of us prepared for what lay ahead in terms of chemotherapy and its awful side effects and, perhaps even more so, for the psychological, emotional and spiritual effects of a cancer diagnosis.

The following day, Friday, 22nd June, 2001, Ruth was transferred to Pendlebury Children’s Hospital in Manchester. Nothing could have prepared me for what greeted us as we walked onto Borchardt Ward, the children’s cancer ward – the sight of the children, some lying, curled up on their beds, passively accepting the toxic chemotherapy drugs being infused into their veins, others wandering up and down the ward, pulling their IVAC stands or being helped by their parents. Most had no hair yet had smiles on their faces (even though these rarely reached their eyes). IVACS beeped almost continuously and nurses, dressed in pink or blue hurried up and down the ward carrying plastic bottles of chemotherapy drugs and saline. The smell was most distinctive and impossible to describe. The ward was overbearingly hot and the beds almost on top of one another. The reality suddenly hit me – Ruth, our beloved daughter, had cancer! Whether or not she lived or died depended so much on what was to happen on this ward over the coming days and months.

CT scans and the full results of the biopsies revealed that Ruth had Anaplastic Large Cell Lymphoma and that it was at Stage IV – not the best of news! Dr Wynn told us that this was a very rare form of lymphoma (even rarer in girls than in boys) and that it was very aggressive. He outlined the treatment protocol – seven, six day blocks of intensive chemotherapy (including a weekly spinal injection of methotrexate) beginning with a two week block, the rest being spaced with a two week gap in between to allow Ruth’s blood cells time to recover. This was to be followed (as a result of randomisation in a trial), by seven months of weekly injections of vinblastine. He told us that because Ruth’s cancer was both so advanced and so aggressive, there was a risk that she would not survive the treatment or that she could go into renal failure and need to be on a life-support machine at some point during it. However, he also inspired us with a confidence that Ruth was in the best of hands and we instinctively felt that if anyone could help her, he could.

The following six months became a blur of weeks spent in hospital watching the bags of chemotherapy drugs and innumerable bags of saline being infused through Ruth’s Hickman Line, with the intervening weeks at home spent coping with the awful side effects of the treatment – hair loss, mouth ulcers, boils which rapidly flared up needing intravenous antibiotics, severe constipation, nausea, a spinal headache, extreme fatigue and weakness, irregular heart beats and high blood pressure, pains throughout her body so that Ruth could not even turn over in bed without help…..and an MRSA infection along her Hickman Line which meant her being isolated for most of her treatment (something which Ruth found very hard to bear). John and Stefan were obviously both deeply affected by their sister’s illness and yet spent their time with her trying to make her smile and being very positive. Ruth herself was determined to do all that she could to get better. She knew that she needed to eat to keep her strength up and even when her mouth was terribly ulcerated and sore as a result of the chemotherapy, was determined not to have to resort to a gastro nasal tube and struggled to eat pureed food. She drank literally litres of water each day to help her kidneys (probably the reason why she never needed that life support machine!) and was meticulous about her mouth care. Each day seemed to bring new challenges and a new understanding of what cancer really means.

As a mother, one’s whole life is geared towards nurturing and protecting one’s children. To be faced with a life threatening illness such as cancer is to be confronted with one’s ultimate powerlessness and vulnerability. I quickly came to realise that whilst I had given birth to Ruth, I could not give her life! During those first few months when all her friends were busy beginning their GCSE courses and planning their futures – becoming increasingly independent – Ruth’s life was put on hold as she depended on us to help her with even the most basic tasks of feeding, washing and toileting! I remember on one of the rare occasions that I went into Lancaster, I met one of her school friends who stopped to ask how Ruth was – I remember walking away in tears feeling the injustice of it all. It is hard enough to see an adult suffer, but to witness innocent children suffering so intensely is beyond understanding. Yet those children on Borchardt Ward were – and continue to be – an inspiration to us in the courageous way in which they accepted their suffering and managed to smile through so much. I was often reminded of Isaiah’s description of the Suffering Servant:

“Harshly dealt with, he bore it humbly,
he never opened His mouth,
like a lamb that is led to the slaughterhouse,
like a sheep that is dumb before its shearers….” (Isaiah 53:7)

In fact, Borchardt Ward came to symbolise Calvary for me, as the children bravely ‘carried their crosses’ (symbolised quite potently by the IVAC stands) and accepted the harsh treatment meted out to them. There were tears but more often there were smiles and Ruth was not alone in her usual response to being asked ‘how are you today?’ , ‘OK, thank you’!

During those early weeks and months of treatment, it felt as if we had been plunged into a raging torrent and it was a case of simply surviving each hour and each day as we were faced with ‘living with cancer’. Our lives were now dominated by terms such as neutropaenia, methotrexate, ifosfamide, vinblastine, cytarabine, doxorubicin, cyclophosphamide, etoposide, treatment protocols……..and by CT scans, x-rays, lumbar punctures, blood tests, fluid input and output, pain control……..Survival and recovery were all that mattered. Our values were not so much challenged as put into perspective. For most of the time, we take life for granted – now we realised just how precious a gift it is – and especially the lives of one’s children. In the Bible, we are told to “choose life, so that you and your descendants may live, in the love of Yahweh your God…” (Deuteronomy 30:19). Prior to Ruth’s illness, choosing life, especially in relation to our hopes for the children, had centred quite a lot on looking to the future, on equipping them for a career and helping them discern what was right for them – now all this faded in importance as we realised just how precious is the very gift of life itself – the ‘being’ rather than the ‘doing’. It seemed that all around us, people were ‘getting on with life’, concerned with job satisfaction, exam results, house improvements…we felt as if were now living in an almost ‘parallel universe’, following uncharted paths, feeling our way forward almost inch by inch. So much seemed to have been stripped away from us – and yet we realised how truly rich we were as a family – rich in love.

Time and again, those words which I had first heard in the dark of night on Borchardt Ward came back to me: “All you can do is love her”. Yes, I felt powerless, powerless to cure the cancer, but I gradually came to a deep awareness of the true power of love and realised that what was most important was simply to ‘be there’ for Ruth, for John and for Stefan. Our understanding of love during this time has been both challenged and deepened as we have had to live daily with the reality of the knowledge that life is a fragile and very precious gift. Ruth is our child, I gave birth to her but I did not give her life – life is God’s gift. It is a precious gift, a gift to treasure, to protect, to nurture – but not ours to control. This ultimate powerlessness has been very difficult to come to terms with (especially when we have shared the almost unbearable grief of parents whose children have tragically not survived) and yet we know in our hearts the very real power of love – a love which has sustained us through the darkest moments and which is also a source of deep and real joy to us. It is a love which at times pierces us to the depths of our beings and at other times causes our hearts to soar – a love “costing not less than everything” (T.S. Eliot). Whilst we, as parents, have had to learn the very difficult lesson that we cannot just wrap our arms around our children and keep them safe from all harm but have to be able to stand with Mary, at the foot of the cross, we have known, too, that there is a greater love which enfolds us all, for “underneath us are the everlasting arms”. It is this love which has somehow sustained us and given us hope in the future…whatever it brings. It is a love which we have known tangibly in our family and through the ongoing support and prayers of so many people throughout these past few years.

Many people have asked us where we have found God during this time. My husband has found great consolation in his deep faith and has always trusted that somehow, ‘all shall be well’. For myself, I have to confess that there have been times when my faith has been deeply challenged and God has seemed strangely silent! I have always believed that one should be totally open-handed before God – to ‘be done unto’ rather than ‘to do’. However, it is not easy to be open-handed with the life of one’s child – far easier to offer one’s own life! And so I have known both anger and pain, grief and joy, hatred and love in my relationship with God during this time. The only thing that has made sense has been the sure knowledge that Jesus has walked this way before us – and it was not easy for Him: “if it is possible, let this cup pass from me…”(Luke 22:42). Far more tangible has been an awareness of God’s presence in the love we have witnessed – the immense love of parents for their suffering children, the love and compassion of the doctors and nurses as they use their skill and knowledge to treat the children in their care and, perhaps most of all, the love radiating out from Ruth and the other children whose lives have been so brutally affected by this cruel disease.

When Ruth had completed all her chemotherapy, CT scans, x-rays and a lumbar puncture revealed no signs of active lymphoma and we, as a family, were filled with joy. However, when Paul asked if we could now be cautiously optimistic, Dr Wynn looked at us and after pausing for a few moments, simply said: “cautiously hopeful”. As we embarked on the next stage of the ‘cancer journey’, that word ‘hope’ has come to be a key word for us as we have tried to come to terms with all that has happened, have lived with scares of relapse and have also tried to adjust to ‘normality’ whilst not losing touch with the lessons we have learnt – especially the great lesson of living each day to the full and being ever thankful for the gift of each other.

There have been many times during the past three years when we have felt very much as if we were, as a family, on the edge of a deep abyss, yet it is perhaps only since Ruth completed all her chemotherapy that the enormity of all that she has undergone has really hit us. Whilst we were travelling weekly to and from Pendlebury and learning to cope not only with the reality of the diagnosis but also with all the harsh side effects of the chemotherapy it was as if we were carried along by a raging torrent, struggling to keep afloat. There are still times when it feels as if the waves could sweep us away but we are now trying to adjust to calmer waters and learning to live in what at times feels like a totally new landscape. It is as if our lives have been affected by a major earthquake and we are still suffering from the aftershocks. Our old, familiar landscape with its well travelled pathways and familiar landmarks has been devastated and we are learning to adapt to a new territory. As we look around, we recognise the remains of once strong edifices which once dominated our landscape but now lie shattered. A new landscape is emerging but it will take time for us to feel fully ‘at home’ in it. Meanwhile, we have to tread carefully and find new pathways, new landmarks, new ‘ways of being’ – and allow ourselves time to be healed of all the bruises and wounds suffered during the earthquake. We know that there are ‘no guarantees’ and that we cannot know just how this new landscape will finally take shape, but we have so much to be thankful for and it seems that what is important is to trust and to hope and to continue to believe in the ultimate power of love.

In many ways, our experience of the cancer journey – and especially of Borchardt Ward – has been like a journey to Calvary, thrust into the heart of the mystery of suffering. Just as Calvary is not simply an historical event but pivotal to our whole Christian existence, so, too, our lives have been changed, our priorities radically altered. We have seen so much innocent suffering and witnessed too many lives cut tragically short and families torn apart. Yet we have also experienced glimpses of unconditional love – God’s Love incarnate in the unstinting self-giving of parents, children and carers.

We are no closer to understanding the whole mystery of suffering – if anything, the mystery seems even more incomprehensible! What we do know is that love IS the only answer – the love of God for us and our response in love to others – and especially our love for those who suffer in any way. There have been times when we have felt that our hearts were being torn apart, but through it all, our love as a family has grown immeasurably. We know that we have cause to celebrate for, as Henri Nouwen says:

“Celebration can really come about only where fear
and love, joy and sorrow, tears and smiles can exist
together. Celebration is the acceptance of life in a
constantly increasing awareness of its preciousness.”
(Henri Nouwen: ‘Beauty of the Beloved’)

- and one of our greatest joys is to hear Ruth playing her flute again – a celebration of love and of life and a tribute to all those who have helped her on her cancer journey.