Benny is 11 years old and lives with his mum, dad and 14 year old brother, Jack.
In May, Benny came home from school complaining about a sore throat and he had a fever. After a trip to the doctor he was told he had tonsillitis and given a course of antibiotics, but that weekend a rash came up around his ankles and quickly spread to his arms and torso. Benny’s mum and dad thought the rash might be a reaction to the antibiotic he was taking, but took him back to the doctor as a precaution.
Benny was sent for blood tests and after a long day in hospital, his mum and dad were called into a consultation room. They were still expecting to be told that Benny needed a tonsillectomy, but to their complete shock, they were given the devastating news that Benny had leukaemia.
The whole family’s lives were turned upside down as they started to think through the implications of Benny’s diagnosis. The doctor told the family to clear their schedule of all plans and commitments for the next 3-6 months. This meant that their upcoming holiday to visit family abroad had to be cancelled. Benny cried when he was told as he had not seen that side of his family in six years and it was meant to be a very special holiday where he would meet his new cousin for the first time.
In May, Benny came home from school complaining about a sore throat and he had a fever. After a trip to the doctor he was told he had tonsillitis and given a course of antibiotics, but that weekend a rash came up around his ankles and quickly spread to his arms and torso. Benny’s mum and dad thought the rash might be a reaction to the antibiotic he was taking, but took him back to the doctor as a precaution.
Benny was sent for blood tests and after a long day in hospital, his mum and dad were called into a consultation room. They were still expecting to be told that Benny needed a tonsillectomy, but to their complete shock, they were given the devastating news that Benny had leukaemia.
The whole family’s lives were turned upside down as they started to think through the implications of Benny’s diagnosis. The doctor told the family to clear their schedule of all plans and commitments for the next 3-6 months. This meant that their upcoming holiday to visit family abroad had to be cancelled. Benny cried when he was told as he had not seen that side of his family in six years and it was meant to be a very special holiday where he would meet his new cousin for the first time.
“I know it sounds clichéd, but a situation like this really is every parent’s worst nightmare. My wife and I were both in a real state of shock. I knew I had to pull it together for Benny but there were times when I just couldn’t hold back the tears, no matter how hard I tried”
The next day Benny was transferred to another hospital, which is 90 minutes away from their home, and that was where he spent the next 29 days having his initial treatment. It was extremely stressful trying to organise travel back and forth, meals, parking, accommodation as well as someone to look after his brother, Jack, while he completed the last six weeks of his school term.
Mum and dad knew that when Benny came home from hospital, his immune system would be really low and his mobility would be restricted. The only bathroom in their house was in desperate need of modernising to ensure that it was hygienic enough for Benny to use, and his bedroom needed major repairs too. The family had to live apart while the work was carried out and additional damp problems were fixed.
All the building work drained their savings, and in the same month the car had electrical problems, and Jack got tonsillitis so had to be kept away from Benny! The worst thing was the realisation that this was only the start of their fight against leukaemia, and there was a long road still to travel.
Benny’s dad, Ally, did some research online and came across our website. He made a care grant application and was awarded some money to help with the costs that were incurred during Benny’s hospital stay, such as parking, food, clothing etc. However, Ally told us that what he found most helpful was the practical and emotional support offered by our Family Support Team.
Mum and dad knew that when Benny came home from hospital, his immune system would be really low and his mobility would be restricted. The only bathroom in their house was in desperate need of modernising to ensure that it was hygienic enough for Benny to use, and his bedroom needed major repairs too. The family had to live apart while the work was carried out and additional damp problems were fixed.
All the building work drained their savings, and in the same month the car had electrical problems, and Jack got tonsillitis so had to be kept away from Benny! The worst thing was the realisation that this was only the start of their fight against leukaemia, and there was a long road still to travel.
Benny’s dad, Ally, did some research online and came across our website. He made a care grant application and was awarded some money to help with the costs that were incurred during Benny’s hospital stay, such as parking, food, clothing etc. However, Ally told us that what he found most helpful was the practical and emotional support offered by our Family Support Team.
“Honestly speaking, my chat with Lennox, more than any other, was really uplifting for my spirits. To have someone on the other end of the phone who could give practical advice in such a brilliant way. I really can’t find enough words to praise them. You dread the idea of having to ask for assistance for fear of being stigmatised but after that conversation I realised that you do need support and it really is out there.”
On day 29, the doctors brought the good news that Benny was in remission, but treatment would continue as it was probable that leukaemia cells still lurked in his body. Benny was discharged, and became an outpatient.
Although the family were reunited and able to establish routines again, Benny’s lack of mobility due to muscle wastage made things difficult. The use of a wheelchair facilitated an improvement in his mobility although he was still keen to stay home rather than venture out anywhere. He kept saying that this life was ruined by leukaemia.
After being home for just six days Benny was admitted back into hospital because his temperature spiked over 38 degrees. The doctor said that his consolidation period and regime had to be changed so it was going to take twice as long as was initially thought. While in this treatment phase, he also cannot be more than an hour away from the local hospital in case of another spike in temperature.
Benny will only be able to attend school on vastly reduced hours and is missing out on his final year of primary school’s annual residential trip in September that he was really looking forward too. He has big challenges facing him over the next three years but Benny has accepted his diagnosis and is up for the fight. His bubbly personality, cheerfulness and politeness will see him through as well as the love and support from family, friends, oncology staff and of course, our Family Support Team.
Although the family were reunited and able to establish routines again, Benny’s lack of mobility due to muscle wastage made things difficult. The use of a wheelchair facilitated an improvement in his mobility although he was still keen to stay home rather than venture out anywhere. He kept saying that this life was ruined by leukaemia.
After being home for just six days Benny was admitted back into hospital because his temperature spiked over 38 degrees. The doctor said that his consolidation period and regime had to be changed so it was going to take twice as long as was initially thought. While in this treatment phase, he also cannot be more than an hour away from the local hospital in case of another spike in temperature.
Benny will only be able to attend school on vastly reduced hours and is missing out on his final year of primary school’s annual residential trip in September that he was really looking forward too. He has big challenges facing him over the next three years but Benny has accepted his diagnosis and is up for the fight. His bubbly personality, cheerfulness and politeness will see him through as well as the love and support from family, friends, oncology staff and of course, our Family Support Team.
*Update 10/05/2019*
Benny is almost two years into his treatment and things seem to be going well, his family remain very cautious but optimistic.
The medical team are pleased with his progress and he has had pretty good school attendance recently with only a couple of hospital admissions in the past year!
Benny is almost two years into his treatment and things seem to be going well, his family remain very cautious but optimistic.
The medical team are pleased with his progress and he has had pretty good school attendance recently with only a couple of hospital admissions in the past year!
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