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Surviving childhood cancer

Updated: Apr 18

This month saw a very significant milestone for our family. Five years after the end of treatment for Acute Lymphoblastic Leukaemia, our daughter had her final discharge appointment at Edinburgh Sick Children's Hospital.

What a journey

Nothing can prepare a family for a journey like this. It tests you as a person and will challenge all of your relationships, both personal and professional. The information given out at diagnosis is simply overwhelming. Life gets turned upside down. You will all be in shock. Treatment starts immediately and is a total whirlwind. Learning as you go you become a part-time haematologist/oncologist and a full-time carer.

You learn about treatment protocols and become familiar with drug names like dexamethasone, mercaptopurine, methotrexate and vincristine. Your house will look like a pharmacy. Everyday life becomes strictly regimented so you give the correct medicines at the correct time and with the correct food etc. Some medicines are dangerous if they are combined. Others, particularly steroids, will massively alter your child's personality and appearance. Haematology terms like white blood counts and lymphocytes will trip off your tongue with ease. You'll learn what it means to be neutropenic and the extra care you need to take when that happens. A simple temperature is no longer as simple as you thought and something relatively benign, like shingles, becomes much more complicated. Both can require hospital stays. Life becomes necessarily different.

At times, the fear of the unknown can be overwhelming. Nothing can prepare you for your child's hair loss, the impact of steroids, their pain and discomfort, the blisters in their throat, their tears and their confusion. I was lost for words when my daughter asked me if she was going to die. Her cry of "Dad, I don't like this" as she was falling asleep from the general anaesthetic required for her quarterly spinal chemo. You will also marvel at their perseverance, the strength and dignity with which they tackle treatment, their humour in adversity ("Dad, why don't you try chemotherapy and see if your hair will grow back too") and their undivided trust in you, their parent.

You will have questions too numerous to answer, but none more vexing than "Why is this happening to us?" As parents, it's easy to get angry at each other. You're tired, you're stressed, you're worried about your child, you're juggling life and hospital and you're trying to hold down a job too! Everything else in the world is carrying on though and you have to find a way to get on with it too. And you will.

A family of Stoics?

We tried not to let ALL get in the way of family life and lived as normally as possible, albeit with extra precautions. In hindsight, we followed some quite Stoic principles like controlling the controllables and not overly worrying about everything else. It rubbed off on our daughter too. She missed almost no school. Even when she was exhausted from treatment and feeling terrible, she still wanted to go. We were patient and resilient and grateful for the positives. Hospital appointments were an excuse to have lunch and a hot chocolate at Victor Hugo's Cafe close to the hospital for example.

We took extra precautions with hygiene, always having sanitiser and wet wipes etc. We avoided crowded places to reduce the risks of catching common infections. Just simple, common-sense things. Unfortunately, ALL made us unreliable guests and we often had to cancel things at short notice. If someone had a cold, we wouldn't go. If our daughter wasn't feeling well enough, we wouldn't go. Some of our friends and family were more understanding than others. As much as possible though, we just got on with life.

This too will pass

The passing of time does make things easier, but the discharge appointment brought a lot of long-buried things flooding back and it was certainly an emotional morning. However, this time the tears were happy ones, rather than filled with the shock and fear of her initial diagnosis back in Dec 2016.

As parents, leukaemia will lurk in the recesses of our minds forever and we will likely always be extra sensitive and vigilant to it. However, the discharge appointment reassured us that our daughter should live a normal, healthy life with no serious long-term consequences. She has to take extra precautions with exposure to the sun (but we all should) and she should never smoke (not that she's ever shown signs of wanting to) but other than that she can live her life to the fullest.

We will always be grateful to the doctors and nurses at Edinburgh Sick Children's Hospital. It takes a special kind of person to work in a children's oncology ward (or any oncology ward for that matter) and we would thank them all again for the care they provided us during treatment.

Thankfully, leukaemia is rare. But that means your doctor may have never seen a child with it before and therefore it is very easy for them to miss it, purely because they are unlikely to be looking for it (trust me, we've been there with several doctors). If anyone reading this is concerned about childhood leukaemia, then please get in touch through the comments section below or directly through the contact function.

I would add night sweats and chronic indigestion to that list too.

More information about treatment protocols can be found here - please take a look.

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