Get down from there – life with childhood leukaemia

A month ago today, I was sitting in Regent’s Park, reading a book, drinking coffee.  I had an evening at the theatre planned.  For the first time in years I felt that everything was under control. I’d spent the previous evening watching Barbra Streisand.

I would never to make it to the theatre.  6 hours later I was on a train, hurtling towards the hospital.  We had been asked to take our 13 year old son to A&E, after some routine blood tests for suspected glandular fever.  An hour after that, my husband would meet me in the car park to tell me that our son had leukaemia.

Just like that.  My wild, reckless, ain’t no mountain high enough, just a flesh wound, boy.

To say that there were no words to describe the feeling sounds trite, and insufficient, but actually there was no feeling.  There was no scream, no collapse, no soundtrack to the moment our world imploded.  Just a quiet boy on a hospital chair and the distant roar of the wave that was about to hit us.

Wrote a note in my diary on the way here, simply says “Bugger”

“What’s my job?  To keep you safe.”  I had said these words so many times. Fred had entered the world with a point to prove, and spent his life so far trying to prove it.  From the day he first rolled over, he was desperate to find the edge.  If he was a film, the warning would say “may contain scenes of mild peril” I couldn’t stop him from climbing walls, furniture, buildings, but at least I could make sure he could do it safely.  I couldn’t stop him from going too fast but I could make sure he always wore a helmet.  The day he learnt to ride a bike, he asked if he could now do stunts.  He is the boy most likely to get caught on the school roof, to ride down a hill in a wheelbarrow, to climb too high in the tree.

In moments of real crisis, years of anxiety can turn out to be your greatest protection.  “Oh goodness, it’s every parent’s worst night” people would trot out.  No, it really isn’t.  I can honestly say that I have imagined far worse than this.  The freak, tragic, poignant accidents that were waiting to drop at any minute.  The knitting needles, power tools, mobile phone chargers, knives in dishwashers and open bodies of water that have all been navigated without incident.  The Final Destination producers were amateurs.

But in the words of Jospeh Heller, ‘Just because you’re paranoid doesn’t mean they’re not after you.’  All this time I had been looking the wrong way.

And yet again, they were about to raise the number of missions. Within 24 hours we had been admitted to Birmingham Children’s hospital and treatment had started.  No waiting for test results, no periods of uncertainty but in with both feet, which is very much his way.  And then we were passengers – completely surrendered to the doctors, nurses, support workers who carried us through the next few weeks. And the circle behind them, who fed us, did the school run and answered in the middle of the night.

It is strange what stays with you, and what is too hard to bear.  For me, it, was an ultrasound on his heart.  Ironically the least invasive of all the tests, it wasn’t even to show anything, just a baseline to compare later.  I stood in that room and was instantly transported back to the first ultrasound I had ever had, the first time I had seen an image of that heart and the first moment I had become his mother.  I had sworn to keep him safe and now I had to swear it all over again.  My husband did the next one.

There are so many moments over the last few week, that I have likened to having a newborn baby back in the house.  Due to the steroids, he’s demanding to be fed every 90 minutes (or every time I sit down) and can’t sleep.  And then there’s the overriding feeling of complete fear and an inability to see what the future looks like.  Rather than NCT coffees, I’m now a Cancer Mum, which is a group literally no one wants to be a member of, but full of unbelievable strength.

We have been told the outlook is very good.  Apparently ALL is a good cancer to have, so that’s nice.  It’s the most common childhood cancer, with 400 children being diagnosed a year, but the treatment is long and arduous.  It will be three years before it is finished.  And just like a new mother trying to imagine life with a toddler, it feels a lifetime away.

And my baby is taller than me, and stronger than me.  He enjoys physical affection about as much as a wet cat, and openly mocks me throughout approximately 78% of the day.  I talked to him before writing, because this is not really my story to tell.  This is not how these years were supposed to be.

Like storming a beach on D-Day, you wonder how you can keep going when your arms been shot off, but when the bullets are still firing, there is nothing left to do but put your head down and keep on running.

9 thoughts on “Get down from there – life with childhood leukaemia”

  1. Sweet Girl, Loved this. Sounds like things are going along. Do you need anything? Will send pasta. Does he eat pasta? XX Geoff

  2. Oh Louise, such amazing writing. And such strength. Sending you hugs, love and lots of admiration for all of you at such a tough time. xxx

  3. So relate to this Louise, my daughter has the BAD type of leukaemia, and reading this is exactly how I feel and felt. Every time she has an ultra sound I remember it being me with her in my belly. And amazed at the miracle that was happening that no one could even see. The helpless feeling of wishing you had a window to check on your baby and see all was well transfers to wishing they had a window so you could see if treatment is working. I often say the helplessness, sleeplessness, and being on duty 24/7 is exactly like having a new born again. Thanks for sharing your thoughts.

  4. Wonderful to read things going along in the right direction I’m happy to do the fund raise for teenagers cancer trust too as you know we have supported this since our sons best friend went throufh5tough times at 15/16 and now getting married in May!! Just let me know when good for you Louise keeping being you your doing great xx


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