Posted on Friday 29 November 2019
Bilbo’s story: “I can tell you nothing will ever be as scary as my child getting cancer, if I can stare it in the face and come out the other side, I can take on the world.”
Bilbo is six years old and was diagnosed with leukaemia in October 2018. This Christmas, Bilbo is starring in H. Samuel and Ernest Jones Christmas teddy bear campaign to raise vital funds for CLIC Sargent. You can buy Pebbles, the CLIC Sargent bear from any H. Samuel or Ernest Jones store for £9.99.
Here mum Kim shares their story.
“Bilbo started school in September last year and it was probably two to three weeks in that I started to notice he was lethargic. He had lost weight which was unusual too. The scary thing is a lot of the symptoms present as everyday normal childhood grumbles. He was a bit tired, “but he’s just started school” people would say. He had bruising, “he’s a normal active child”.
I asked other mum friends how their children were after school, their children were doing clubs and activities, Bilbo could barely stay awake. I could visibly see the deterioration in Bilbo, he was so pale.
My mummy instinct got the better of me and I phoned 111. They advised us to get a blood test in the next 24 hours. The following day our GP sent us to the assessment unit at our local hospital as Bilbo’s spleen was enlarged. He had a blood test and within a couple of hours he had been diagnosed with leukaemia. Our lives were never to be the same again.
Those first few days seem like a dream. Even now it feels like it happened to someone else. Other cancer mums kept saying you will get through this and I kept thinking how? There were times when I couldn’t see beyond the next day.
Bilbo was put straight on steroids. They are an evil medication; they completely transform everything about your child. Their mood, their personality and their appetite. We soon began cooking around the clock.
In the early days we were backwards and forwards to Oxford, every week. Oxford is 38 miles away and can often take over an hour to drive there. The traffic is horrendous, even getting into the hospital grounds can be a nightmare and take hours. Over the last year we’ve travelled a total of 3420 miles backwards and forwards.
Bilbo suffered from other nasty side effects like nausea and sickness. We couldn’t leave the house with ease because of his needs. We have been very fortunate; Bilbo hasn’t had many complications. But then a temperature spike with a hospital stay, a bout of nausea or the endless blood tests and dressing changes are stark reminders that we are not a normal family.
Bilbo lost his hair twice; it broke my heart for him when he said he was called baldy on the school playground.
And when the lows come, they come hard. Like knowing the daily chemo he needs for the next three years makes him suffer from horrendous nausea.
I hope the long-term impact of what he will go through won’t leave the same scars they’ve left etched in our memories, the tears, the pain and the anxiety he has had over the last year. He hates needles, he is terrified of cannulas. But he is also incredibly brave and we couldn’t be prouder.
It has hit me like a tonne of bricks that cancer will be a part of our son’s life for so long… even once you’re over the treatment it lives with your forever. And not just for Bilbo but for our other son Harrison too. From the day Bilbo was diagnosed everything was different for him too.
Parenting a sick child is really hard. And we live in constant fear that lightening might strike twice. I have anxiety about Harrison starting school. We were robbed of that magical experience for Bilbo.
And throughout our journey our CLIC Sargent social worker Sarah has been there for us from day one. Sarah is always a comforting friendly face. She helped us to navigate the minefield that is a cancer diagnosis. All the emotions and implications.
Sarah listened to our concerns and was able to adapt her support to things that were most important to us. For example, I was really worried about Bilbo’s education. I was concerned he was missing those vital early building blocks to reading and writing. Sarah was able to put our minds at rest. She liaised with Bilbo’s school and the hospital school to make sure we had the support we needed.
Having someone listen to your random thoughts who really understands what you are going through is priceless. Cancer can be lonely. And Sarah has supported us with all the endless paperwork, helping us navigate complex form filling making it as easy for us as possible.
Cancer has changed our lives forever. And what I’ve learned over the last year is that cancer is as scary and horrific as you can imagine in your worst nightmares. And when it is your child that is suffering…well there are no words that capture how that feels.
But I can tell you nothing will ever be as scary as my child getting cancer, if I can stare it in the face and come out the other side, I can take on the world.”
You can buy Pebbles, the CLIC Sargent bear from any H. Samuel or Ernest Jones store for £9.99 to help raise money for CLIC Sargent this Christmas.
Read more of Mum Kim’s surviving Christmas with Cancer blog here.