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Henly's Story

Henly and his Family visited Ben's Retreat from the 10th February.

"On Monday 22nd June 2020 our world came crashing down when we heard the words “Henly has leukaemia”
I took Henly to the doctors in the morning as I had noticed for a couple of weeks his appetite had reduced, he was napping when he could and also complaining of stomach aches.
The doctor examined Henly and sent us straight to Worthing hospital Childrens ward for a blood test.
Within a few hours after bloods had been taken and a chest X-ray was done. A consultant sat us down and gave us the devastating news.
We were living a real life nightmare.
On that first day your given so much information, it all seemed like a blur but a day I’ll never be able to forget for the rest of my life. Your thrown into a whole new world and put all your trust in the professionals to save your child’s life.
Henly needed blood transfusions straight away.
The following morning he was ambulated to Southampton Piam brown ward where his chemotherapy treatment started straight away.
After more tests it was a confirmed diagnosis of Acute lymphoblastic leukaemia.
Lock down had a huge impact, I had to do the first 2 weeks in hospital alone.
It was tough to say the least.
The first 6 months were incredibly tough for Henly suffered all possible side affects from the chemotherapy and steroid treatment. Hair loss, weight gain, fatigue, pain, sickness, temperature spikes, recurring infections.
Worthing hospital became our second home. What we watched him go through no parent should ever see their child go through.
On 6th October our world came crashing down again, we were admitted to Worthing hospital. Henly was being sick and complaining of severe headaches,
high temperature spikes along with a low heart rate and that’s when they did a CT scan which showed Henly had a bleed to the brain.
This was due to chemotherapy being administered when his platelets count was so low.
He was intubated and then ambulated to Southampton hospital where he underwent 6 hour life threatening surgery to remove the bleed. The surgery was a success.
Henly spent 2 weeks in PICU in which Henly surprised everyone and made a full recovery.
We will never be able to thank the team at Worthing hospital, the neurosurgeons of Southampton m & the PICU team enough for saving Henlys life.
Henly is now in maintenance phase of his treatment where He has oral chemotherapy everyday, chemotherapy through his central line once a month along side a 5 day steroid pulse and a lumbar puncture every 12 weeks.
Henlys is a huge Disney fan, hes very theatrical, always smiling and takes it all in his stride. He has his nurses and doctors in fits of laughter when he’s an inpatient.
He’s an incredible boy and we are so proud of how he is in fighting this battle.
Huge thanks to everyone at Ben Saunders Foundation for this much needed break."

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