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Making a KEY difference to children recovering from cancer

 

In mid-2011, just before he moved from nursery to primary school, Laughlin started to wobble. Literally. Add excruciating,

irregular headaches and we found ourselves in the local hospital, hearing the dreaded words that an emergency MRI of eldest,

4 year old son, had identified a golf-ball sized tumour at the back of his head. A nasty, malignant Medulloblastoma, that can spread with speed across the brain and spine. Cue blue-light to Great Ormond Street Hospital (GOSH) and 8 hours of emergency surgery the following day, followed by 30 daily doses of radiotherapy and a year of varied chemotherapy. Just over a year later he successfully completed his treatment, and regular scans ever since have confirmed there has been no regrowth.

 

But not so the Cancer. We were forced to play with the fire of toxic chemotherapy and radiation, and while you can accept a few scaldings  - hearing loss, an indefinable impact on learning, and isolation among other physical and emotional blisters – you never expect spontaneous combustion. Around 5 months out of treatment his blood counts dipped and remained constantly suppressed. Initial tests indicated that this might just be suppression of his marrow by the ‘kissing disease’ as he had the glandular fever virus active in his blood. 6+ months with no improvement led to repeat tests – which in November 2013 confirmed that, just as we had rats in our shed, he had rats in his blood.  His previous treatment had caused a new Cancer – secondary AML leukaemia.

 

Nasty at the best of times, but all the more so when chromosomes have been altered in the marrow blasts. No way forwards without wiping out the old marrow and replacing it via new donor stem cells. And so the worldwide hunt for his Blood Twin began.

 

 

Click Here  to go to the Caring Bridge website to read more of Lockey’s journey 

 

Want to find out Lockey’s day-to-day take on life – follow him on Twitter @laughnessmonsta

Laughlin and Gus lock lock lock lock lock lock lock lock

Two battles with cancer within 3 years – around half his life fighting a highly malignant brain tumour (Medulloblastoma) and fast developing leukaemia (AML) resulting from previous treatment

 

Extended periods in hospital – most recently 5 weeks over Christmas, and at some points for weeks on end in isolation, in a single room

 

Infections in the IV line into his heart – his Hickman Line or Wigglies. No, not Wiggles. Wigglies

 

30 daily general anaesthetics and radiotherapy treatments – Magic milk and brain photos

 

A cocktail of highly toxic chemotherapy – with risks of hearing loss, kidney damage...

 

Regular blood and platelet transfusions (‘power and glue top ups)

 

Missing the transition into primary school, and only attending school part-time until the end of Year 1.... only to be readmitted after less than a term of full-time education

 

Living for 12 months almost entirely on banana milk – not that the flavour mattered as it was pumped directly to his stomach via his ‘second belly-button’ and PEG tube

Dig-loving; Treasure finding; Spaniel cuddling; Lego collecting; Early rising; Roman villa discovering;

Street dancing; Eye-crossing; Margarita scoffing; Lord of the Rings fixating; Scooby mystery solving;

Pottermaniac; Dark side identifying; Funny voice finding; still-won’t-get-out-of-bed-by-himself; Language loving;

A Little Bit About Laughlin (LocKEY)

Laughlin and Vader

Laughlin's Diagnosis

Laughlin at GOSH2 Laughlin after transplant Laughlin in GOSH Laughlin Transplant March 2014