On the 31st December 2012 Leah, the second eldest of our four children, celebrated her fifteenth birthday. This was also when I took her to our GP regarding some minor ailments. Our GP did some blood tests, the results of which ultimately changed our lives forever. A series of investigations followed, which initially suggested that there was nothing seriously wrong with Leah. However, on the 19th April 2013 a Hospital Consultant phoned to inform me that Leah had a rare and life threatening form of bone marrow failure, for which she urgently required a bone marrow transplant. Leah’s treatment would require a three month stay at Bristol Children’s Hospital. We live in N. Ireland.
Within days Leah’s siblings had all been tested to see if one of them was a compatible bone marrow donor. Thankfully Leah’s brother was a perfect match. This however did not guarantee that the treatment would be successful. I asked the doctor what our options would be if Leah’s transplant failed, his swift reply chilled me to the bone: “Palliative care.”
The response from our large circle of family and friends to Leah’s diagnosis was varied. The most helpful responses were from those who engaged with us and found practical ways to show us that they cared.
Saying something
I appreciated it when people approached me and said things like “I’ve heard about Leah’s illness, I’m really sorry, this must be so difficult for all of you.” What wasn’t helpful was when people didn’t speak to us at all, or conversed with us without mentioning Leah’s illness. When someone did not find a way to show us that they cared, we assumed that they didn’t care, although in retrospect I realise this may not have been true.
Practical support
Many friends and family found practical ways to show their care for us and this definitely helped. Some gave attention to our other children and took them on outings, this was vitally important at a time when our ill child was the primary focus of attention. Others brought us bags of groceries, fresh baking or home cooked meals; we were on a constant treadmill of hospital appointments and finding time to eat was at times a challenge, much less time to cook. Some helped with fundraising and gave financially; neither my husband nor I were able to continue working and we had significant financial needs. Many of our hospital appointments involved a 140 mile round trip and some people helped out with driving us to these which was hugely helpful. I was way too distressed and exhausted to be safe behind the wheel on journeys of that length. Another friend put together a hospital “goodie bag” for me that contained miniatures of things like baby wipes, tissues, boiled sweets, lip balm, hand cream and cereal bars. A kind friend went to the Disney Store and bought Leah a very pretty pair of pyjamas that became her absolute favourite. Other useful gifts included Amazon vouchers, Netflix and Spotify subscriptions.
Listening
We really appreciated everyone’s attempts to engage meaningfully with our situation and show their love and care for us as a family. Unless people had direct experience of a situation similar to ours and could signpost us to relevant sources of support (in the early days we hadn’t a clue as to which charities might be able to help us) it was infinitely preferable if people listened to us rather than attempting to give us advice. We were totally in shock and we struggled to process information. I felt as if I was on a runaway train hurtling towards a very unwanted destination. I desperately needed to know that people cared and that we weren’t alone on this journey.
Occasionally people told us to ‘think positive’ and I struggled with this. Leah had a strong Christian faith and we believed that prayer was very important. However, being instructed by others to ‘think positive’ was unnerving – if our child died would it somehow be our fault because we had failed to think positively enough?
Similarly unhelpful for us was when well-meaning friends said things like “Leah’s going to be okay, I just know it!” Comments like this left us feeling that the person could not deal with our reality and that they were distancing themselves from our situation.
Keeping in touch
What really helped and encouraged us on an ongoing basis were those who sent us greeting cards, texts, emails, Facebook messages (with no expectation of a response from us) or even just hit the response button on one of our Facebook updates. Leah and I spent months in isolation and these messages penetrated our sense of aloneness and helped us to face each day knowing that others cared and were praying for us or thinking about us.
As time went on and Leah became more unwell, I needed to know that friends and family were there when I needed them. I needed people who could meet with me for coffee and let me talk if I wanted to talk, but not pry or ask questions if I wasn’t in the mood for opening up. I needed to continue receiving invitations to important events in other people’s lives even though I was probably not going to be able to attend, as I needed to feel that I was still a significant person in their lives. I wanted to continue hearing their news and know what was happening in their families. At times it felt like I was struggling to hold onto my sanity because of my distress over Leah’s illness, nevertheless I understood that relationships are two way streets and I needed tiny islands of normality in my life. Sometimes a silent hug or a gentle squeeze of my hand told me what I needed to know – that somebody cared.
Leah’s bone marrow transplant was successful, but unfortunately she developed complications afterwards. Every possible effort was made to save Leah’s life but eventually it became obvious that we were facing end of life care for our beloved daughter. Not one person at the hospital said that a hospice death would be possible – Leah was on a ventilator at this point in her end of life care. However, due to my persistence on the matter, they eventually agreed to transport Leah to the Children’s Hospice. It meant so much to us as a family to be able to leave the clinical environment of the ICU and take Leah to the relaxed and homely environment of the Children’s Hospice. On one occasion in ICU I had become very distressed when the nurses had put a gown on my daughter with the words ‘hospital property’ emblazoned across it. The first thing I noticed on arrival at the hospice was a colourful poster on her bedroom door with the words ‘Leah’s Room’ – this set the scene for the very individualised care that Leah and our family would receive. In ICU visiting was restricted, by necessity, but now at last, in the hospice, Leah could be surrounded by all those who were closest to her in life – there was no restrictions on numbers. All of Leah’s and our wishes were taken into account. On the 16th January 2014 Leah died in peace and dignity in the N.I. Children’s Hospice, surrounded by love.
As part of Children’s Hospice Week (22-28 May) we’re turning up the volume on children’s palliative care to shine a light on what life is like for families and to tackle taboos surrounding serious childhood illness and death.