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Member of the Month June 2023

Toby Clanahan

Toby was 20 months old when he started showing signs of not being able to walk. He was treated for a fracture but once the cast came off he was still falling over. What followed was numerous accidents, A&E visits, X Rays and orthopaedic consultations. As his mother, Leah did not believe that the leg injury was the cause but only a symptom. Toby was very resilient whilst Leah tried to fight the health system to be heard. He was a sickly baby and having to be in the car, and wait hours sometimes to be seen was extremely hard for him.

Toby was misdiagnosed for 3 months by his local GP and hospital, with his mum being told his symptoms were only viral. He was prescribed numerous amounts of antibiotics which did not help. The sore leg turned to Toby being unwell, looking very pale, and extreme tiredness. Then his lymph nodes started increasing in size around his ears. Again it was put down to being a viral infection. 

“It was a traumatic time for him as he was only a baby, and being in the hospital environment made him very anxious. It was not just one off visits. We were there every week, in the Accident and Emergency waiting room or the emergency appointments at the GP, having X-rays or being asked the same questions over and over. He was even referred to a ENT specialist. By that stage I had already convinced myself it was cancer.”  – Leah, Toby’s mum

After fighting to be heard, Leah convinced the GP to send Toby for a blood test. After what seemed like an eternity, the hospital called and confirmed what Leah had been fearing – Toby had Leukaemia.

“Even though this was devastating to hear, I was actually thankful for finally having an answer and confirmation.”

Toby went into hospital a week before the first Covid lockdown, so one day Toby left his home and his siblings to immediately be in hospital and for days did not understand what was happening. Toby was so overwhelmed. For weeks he hated the colour blue, (the nurses uniform) and would scream at every interaction with medical staff. It was very hard for him to trust anyone.

He was also subjected to a horrific moment in A&E whilst his port-a-cath was being accessed by an inexperienced Doctor in handling grippers. This was a major set back for us. It was a battle to get Toby into hospital after first having chemotherapy, and now he would just be completely terrified at getting in the car to drive there. Sometimes we would just use the car to drive to see our local fire station (Toby loves fire engines) and he would be terrified that we were going to hospital. We spent many months trying to help his anxiety and we are so proud of the changes he made in his handling of the gripper. His father told him to close his eyes and think of somewhere sunny.

And from that moment Toby’s family saw a three year old boy take his journey into his own hands. Toby set the tone of what he would accept and what he would not. He breathed. He closed his eyes and pictured sunnier places and he got through those moments that most of us could never imagine.

We are extremely proud of our little boy. He has showed resilience and strength when we could not. He has taught us that he is prepared and able to conquer anything in his life. Now finally after three years of hard treatment, he excitedly waits for his port-a-cath to be removed. The object in his chest that initially caused him so much stress and upset – he waits to have it taken out and even told us that he hopes they let him keep it, because it is a part of him. Toby. Our amazing warrior.

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