Oliver Mason
Our Member of the Month this month is Oliver Mason.
Oliver came into the world in September 2019. However, by May 2020, a small scab had begun to manifest on his scalp. This development prompted numerous visits and phone consultations with medical professionals. Unfortunately, the progression of addressing his condition faced obstacles due to the widespread impact of the Covid-19 pandemic. Over time, the condition of Oliver’s scalp steadily deteriorated, making the journey to finding a resolution more challenging.
In 2021, Oliver’s scalp had worsened with the spot going through cycles of growing in size and bursting at the slightest knock to his head and then shrinking back down. After numerous trips to the dermatologist and countless different steroids, it was finally decided that Oliver needed a biopsy; unfortunately, due to various delays and confusion this process took 6 months. During that time Oliver’s health continued to decline, and over Christmas of 2021 Oliver had what his family thought was a sickness bug; Oliver went to the hospital a couple more times due to these developments, however was sent home again.
“He then started to drink and drink. He would do nothing but drink, barely ate anything, not even had time for a hug with mummy.“
After consistent chasing, the results of Oliver’s biopsy came back after 5 weeks in April 2022 – this was when, at 2 years old, Oliver was diagnosed with a rare condition called Langerhans Cell Histiocytosis (LCH). The condition had affected Oliver’s scalp and damaged his pituitary gland causing diabetes insipidus.
“We spent a few days in Manchester children’s hospital to under take a full body X-ray, MRI scan and ultrasound. He had a port fitted and started his chemotherapy and steroid routine. In the second round his hair fell out, ‘hair’s just hair’ but it’s more what it stood for and made the journey feel real.
Oliver soon started medication to gain control of his excessive urination and thirst, and immediately his family gained their happy, smiley, loving boy back. Oliver had time to play, gained weight and most importantly he had time for mummy’s hugs.“
Oliver’s family have undertaken countless trips to the hospital, and although he has endured temperature spikes including 1 infection, Oliver loves going to the hospital! He really enjoys playing with the nurses and getting 1:1 time with his mum and/or dad.
With Oliver and his family now less than 4 months away from completing the 2 year treatment plan, Oliver has been doing maintenance chemo and steroids every 3 weeks. His family say he has been amazing throughout, and even though he knows no different, has taken everything in his stride with strength, courage and bravery.
We know he is too young to know any different but he takes each challenge in his stride; he loves going to hospital to meet the ‘nice lady’ – his word for the play staff who have been helping him build his collection of beads. He has undertaken nearly 2 years of treatment and due to finish in April this year!!! Where we will enter a world of watch and wait. For now we let him organise his beads into a storage box organiser and then when he is old enough he can decide what to do with them. He loves sorting them into colour and doing the bead challenges – he keeps asking to make new pictures with them“
sara chalklin-smith
god bless Oiver you are so good and special love from nanny and pops