A letter of gratitude: Reggie's story

I have been wanting to write you a letter of gratitude for a while, but I find it difficult to find the words to say thank you for all you have done for me and my family. I am humbled by your support. You have helped in a way that I could never repay. I want to give you context to my gratitude. Hopefully it will help you understand how you help families like mine who are going through the most difficult times.

Before Reggie’s diagnosis and subsequent treatment, Reggie was a very active child. Very rough and tumble. He loved wrestling with his brothers and me. He loved being outdoors.

During the days when his brothers were at school and I at work, Reggie would love going out for long walks in the park with his mum. He was a joy to be around, although he did have a temper at times! But he really repaid us with love, hugs and attention. As experienced parents we really found time to cherish the moments with Reggie.

In summer 2021, Reggie was going about his usual business playing outside with his brothers. I was at a garden party and received a call from his mum. She had noticed a lump had developed on his abdomen just below his rib cage. We were concerned, but not overly concerned. I mean, it’s concerning finding a lump on your child, but you are so far from thinking it may be something to worry about. I think the human default condition is to put the real worrying thoughts to the back of your mind. 

Early the next day we decided to take him to the hospital to get checked out. My wife took him through to Kirkcaldy Queen Victoria Hospital to get checked out. The initial paediatrician who examined Reggie was notably concerned. He told us that it seemed like a tumour. We were to stay in hospital for bloods and further diagnosis.

It all happened so fast. We very quickly went from the mindset of mild concern to a state of deep worry. We spent that night in the paediatric unit at the Queen Victoria. No sleep and in a state of shock. Although at that stage we still retained a sense of optimism. It may well have been a benign tumour. We didn’t know…

The following morning, we were taken to the Royal Hospital for Children and Young People in an ambulance (Reggie enjoyed his ride and was made to feel special by the ambulance personnel!).

He was taken them to the Lochranza Children’s Oncology Ward and was very quickly submitted for tests, which included a biopsy of the tumour and a bone marrow sample.

The initial few days in hospital were a real body shock for us. I remember having to hold Reggie tight when he was having cannulas put in his arm. He was screaming, he was in so much pain and crying for me to make it stop. He would fight this happening so much and I had to physically overpower him in order to keep him still, it was devastating for both of us. He just didn’t understand why this was happening to him.

The next few days were the worst few days of our lives. Waiting for a diagnosis was absolute torture. My wife and I had some heartbreaking conversations as we speculated about the possible outcomes of the diagnosis. To put this into some context, my wife and I went from enjoying long summer days playing with the children in the garden, to now sitting in the hospital garden having a serious discussion about how (in the event of a terminal diagnosis) we would spend the remaining days of our beloved son’s life as special as possible. It was a dark time for us, we were numb with shock it was desperate, we love this child so much and the thought of him dying as a child was just so distressing. We were in a sea of anguish. Time had stopped for us – nothing else mattered at this point. 

After what felt like an eternity, we got his diagnosis. Reggie had a relatively rare type of cancer called Burkitt lymphoma. Over and above this, he had traces in his bone marrow, so he also had a diagnosis of leukaemia.

It was stage four, so needed immediate treatment. The treatment came in the form of six intense cycles of chemotherapy. The diagnosis wasn’t great, but at least we had something to work on and a treatment plan set out. And from there, Reggie went into the most difficult and testing time of his life. Everyone’s lives were turned upside down. It was an uncertain path we were on. It was in any event going to be a long and challenging journey ahead. Looking back, our beloved boy’s life was really in the grasp of the unknown.

Over the next five or six months, we spent the entire time in the hospital. Many ups and downs were had. His little body ravaged by the chemo and the side effects it gave. He (of course) lost his hair and muscles. The light in his eyes had dimmed and his head hunched as he battled through what was an absolute assault on his young body. Many an hour was spent just rubbing his back and his tummy. Helping him go to the toilet and just being there for him. I remember with terror and such sadness when one night Reggie woke up and started coughing up blood. The blood was caused by a side effect from one of the chemo drugs. He struggled to lift his head up to look at me, but when he did, he told me he was dying. It was a difficult night.

As a father, I used to question why. Why did this have to happen to my child? Why couldn’t it have happened to me? But unfortunately, we had to come to terms with the fact that life is simply not fair at times. 

Reggie’s treatment came and went. It was the biggest battle of his life, far more than an innocent child should ever need to deal with. But thankfully due to the expertise and the care of the hospital staff, Reggie has come through the other end and is in remission. His hair has started to grow back and he is getting his sparkle back. We all venture forward with a sense of cautious optimism. We as a family are beginning to piece our lives back together and are planning as many trips away together as a family as we possibly can over the next year. We count ourselves as one of the lucky ones and forever will share in the grief of others who are not as lucky.

The gift of accommodation that was given to us by Ronald McDonald House Edinburgh is quite honestly a gift I will remember with humbled gratitude and love for the rest of my life. On a basic level, being able to have a base right next to the ward where our son is receiving treatment, is a wonderful thing. Things change quickly during chemotherapy treatment and being able to attend to your child is immeasurably important as a parent. Also, having a base allows life to continue as well as it can. Personally, it allowed me to continue to work and wash and to rest. That in turn allowed me to form a routine. Having a routine really helped me with mental stability and strength.

But, more so, how the Edinburgh House has helped us in such a generous and touching way was simply allowing us to be there for our child 24/7. Reggie is five now, but, and at that young age, mum and dad are/were really Reggie’s entire world. He has not started to spread his wings, so we are his constant. We are with him when he wakes up in the morning, there to put him to bed, to wash him, play with him, teach him and to above all else, keep him safe.

The gift the free ‘home away from home’ accommodation gave us was simply the most important of all. Allowing us to be always with Reggie to make him feel safe during the most difficult time imaginable. Even with all the machines, all the people, all the noise, all the jabs, all the times getting brought down to theatre, all the tubes, creams, eyedrops, sore tummies, sore backs, sore eyes and sore heads! Allowing us to be there for Reggie to make him feel safe and secure really and honestly means the world to me and my family.

You do incredible work.

Thank you. 

Allan, Nicky, Hayden, Myles and Reggie Griffiths

Carnock, Dunfermline