8-year-old Sophie from Co. Tipperary was diagnosed with Leukaemia in January of this year. Her family are sharing their story to help raise awareness of the impact of a childhood cancer diagnosis.
Sophie is a beautiful, intelligent, fun loving, mischievous, kind girl. She loves her style, all things pop culture & having laughs with her friends. She never stops talking & has aspirations of fame & world domination.
We had already had some bad luck and shocks on the parenting journey, as Sophie’s older brother, Dylan was born with congenital heart defects which required two heart surgeries. That experience was horrific on its own, but I can honestly say that Sophie’s diagnosis was the greatest shock of our lives. The word cancer is the last thing a parent ever expects to hear in relation to their child.
Sophie had been very tired and unwell over Christmas & seemed to have picked up one bug after another since late October/ November. As a home of two full-time working parents, the repeated illnesses were a struggle, but we weren’t overly concerned as every child seemed to be the same in relation to nasty bugs doing the rounds. Both kids had very high temperatures in the days leading up to Christmas, so we took them to the local GP who didn’t see any cause for concern, commented on the many viral infections in circulation and only prescribed an antibiotic due to Dylan’s history.
She was pale as a ghost and literally didn’t have the energy to walk. We were getting more and more anxious as she was getting steadily worse rather than better. It was almost a perfect storm though, as there were almost daily news bulletins in relation to hospitals being overcrowded and staff overwhelmed so people were asked to not present in A&E except in cases of extreme emergencies. This, coupled with the fact that the GP had dismissed it as viral made us feel it was a post viral fatigue or something that would be solved with plenty of rest & an iron tonic we had started her on.
Then, on the day Sophie was due back to school she was in a deep, deep sleep. When we eventually got her up, the poor child collapsed and got sick at the side of the bed.
My husband Rog took Sophie to the GP where he insisted on bloods to be taken as we felt that she must be very low on iron or something.
We will never forget the kindness of the staff in St Luke’s Kilkenny when the absolute bombshell was dropped that Sophie had leukaemia. They obviously knew immediately when her blood results were red flagged in the lab. The poor child had a haemoglobin level of 2 and platelets of 8, which basically meant she was running on fumes. The consultant in Crumlin later explained how close she was to heart failure & that a simple fall or a bad nosebleed would have led to catastrophic consequences. Those words will haunt us forever as we had been trying to push her to get fresh air and partake in various activities all during Christmas with the false sense of security that we had got her checked and all was normal.
We were taken to Crumlin by ambulance the next day. Family and friends took over with Dylan and helped us get organised as the devastating word spread. We were shell shocked, and the initial few days were overwhelming with the amount of information there was to process as well as trying to navigate our own heartache, grief & exhaustion alongside tempering our emotions and staying strong and stoic for Sophie.
We spent the next three weeks or so in Crumlin. The Ronald McDonald house with Jenny and all the wonderful volunteers there was such a blessing to us as we could have Dylan up to stay with us whenever he was lonely. He was back in Tipperary in school, but his parents and sister were gone.
Everyone’s world just gets turned upside down. I often likened this initial period to a nuclear bomb having gone off and only our family was affected.
From the outset, my husband Rog was the more pragmatic one of us. He’s a numbers man and as numerous test results from bone marrow biopsies, lumbar punctures, genomic sequencing returned and the prognosis was good he focused on the light at the end of the tunnel- albeit a long arduous journey.
I really struggled to accept how this could even have happened. I felt that life would never be the same again and that it was so cruel and unfair. Being on St. John’s ward is such an emotional and humbling experience. Anyone who is complaining about material, inconsequential things or looking for problems or reasons to take offense should really spend an hour there with all these incredibly sick children. Anyone with a beating heart would surely find their priorities shifted when they witness this alternate reality on a children’s cancer ward. I kept reminding myself that Sophie had great odds for getting better, and that there were numerous families on the ward who would gladly swap places with us, but my heart was broken and I felt bereft and unfit to face the next two and a half years of treatment.
Coupled with the physical exertion of the illness itself and the intensity of the necessary treatments, was the psychological turmoil the whole thing had on Sophie. It was a nightmare. She – like many 7-year-olds – spent a lot of time admiring herself and styling her beautiful long blonde hair in the mirror. Having to tell her that she would lose her hair was one of the hardest things we’ve ever had to do.
We had been explaining that her blood was very sick and that was why she had to get so much new “good” blood via transfusions. We did use the word Leukaemia in relation to the sick blood but hadn’t gone into greater detail as there were so many other obstacles to deal with. Things that people don’t consider (and I include ourselves in this before it came to our door) like the fact that 7-year-olds don’t know how to take tablets, and suddenly she had a mountain of them to take daily.
As well as the physical pain from the shock of her diagnosis, it’s about navigating a form of anticipatory grief that is all encompassing. We are acutely aware that we are luckier than many parents who were given a time period due to inoperable tumours etc, but we grieved for Sophie’s childhood, her confidence, the life we had planned. I know both our families and our incredible circle of friends were profoundly affected too. People were so very good to us. Practical help and messages of support, prayers, food and gifts came from all quarters. They say you really find out who your friends are when the chips are down, and that old adage could not be truer. We are blessed to have been enveloped by so much love and compassion in the very worst of times.
There’s a staff crisis in psychological and emotional support as well as a terrible shortage of medical social workers in hospital. The haematology CNS team helped fill in many of these gaps to assist us with the very difficult conversations like Sophie losing her hair and waking up to find a double Hickman line in her little chest, but one would have hoped for specifically trained play therapists and child psychologists to be available with the tools to relay this scary and upsetting information in the most child-friendly, yet accurate way possible. We found it so hard to keep our own emotions in check and Sophie would react in a very anguished, angry way – fuelled additionally by large doses of steroids she was taking as part of her treatment. Having a trained, empathetic stranger as a buffer with the bad news seemed a better option.
She provided a shoulder to cry on, a listening ear and much needed advice on the huge amount of bureaucracy that we needed to handle in relation to Sophie’s treatment, my absence from work etc.
Cancer Fund for Children also invited us to enjoy a short break at their therapeutic centre, Daisy Lodge. This gave us a much-needed chance to relax as a family in beautiful surroundings looking out at the majestic Mourne Mountains. We got such a warm welcome from the fabulous staff. We were given a complimentary relaxation therapy, delicious food and fun family challenges through art and play. The fantastic facilities in Daisy Lodge for seriously ill children and their loved ones provide an opportunity to meet and chat with others. Speaking to other families affected by childhood cancer can be just what’s needed to reaffirm the positives and give us the strength to give Sophie all the support she needs.
I don’t think there’s a lot that needs to be said about the horror of a childhood cancer diagnosis as it’s high up the list in terms of every parent’s worst nightmare.
I had already watched my dear friend’s little boy fight neuroblastoma at just 20 months old and the pain that she carried as a mother through his suffering. One of the things she said that had such a profound effect on me was “One day, somehow you just begin to accept it. You will get through this and you’ll be even closer as a family after because of it.” Since we’ve been on St. John’s we’ve seen children die and babies born with cancer. It’s difficult to comprehend a world where this can happen.
But we also must give thanks for the medical advances, where genetic testing is done to elicit the exact type of cancer our children have so that the treatment is targeted specifically to defeat it. Children also have better odds when it comes to remission against this parasitic disease than adults. It just makes one shudder to realise it’s because their little bodies can withstand more of the poisonous chemicals necessary for the cure. It’s a paradoxical feeling when we the parents must wear gloves to prepare the chemotherapy drugs that we are feeding to our child so that we don’t come to any harm from the cytotoxins.
The one absolute for all cancer children is that they are warriors to the core. We talk about building resilience – surely surviving this is the master class in it for life!
There will always be troubles and heartbreak in life, some of us experience these things far worse than others, but even in the darkest of times we must strive to find some light. I hope that by sharing our story someone may find some solace in that they are not alone in this struggle.