Jackson H

26 March 2021

Story Written 2021

Jackson is currently undergoing treatment for T-Cell Acute Lymphoblastic Leukaemia. Diagnosed in February 2020, Jackson has been through quite some journey. After initial diagnosis he picked up some viral infections in March and also tested positive for Covid-19 in April 2020. Jackson presented with a rash on his chest, belly and top of his legs. We kept an eye on it for a day but it didn’t seem to be getting better. After we did the tumbler test and the rash didn’t disappear we took him to A&E where they done some blood tests. It was then we were told the devastating news that Jackson has Leukaemia – other than the rash Jackson was healthy and his usual self. The rash is known as Petechiae. During the the last 11 months since diagnosis Jackson has been through so much. He was very ill in March last year and has a fungal lung infection which he is still receiving treatment for and will be until the end of treatment in 2023. Maintenance had a bumpy start, In October he had positive blood cultures, a bacterial infection in his blood called Pseudomonas Moraxella which took 11 days of antibiotics to clear. At the beginning of December he had an eye infection which landed him in hospital with IV antibiotics. And on New Years Eve he got a temperature with an ear infection, luckily they sent him home a few hours later with oral antibiotics. Jackson’s big sister Ava hasn’t had the best time since Jackson’s diagnosis, she started getting panic attacks and getting upset about death, we took her to see the hospital psychologist and she received art therapy to help. It has got slightly better, but she still has moments of sadness especially with the pandemic still looming over us. Despite all Jackson’s been through he still manages to have a lovely smile on his face and we hope this continues through treatment until 2023 when he will ring that bell.

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Elliot K

19 March 2021

Story Written 2021

Just before Christmas 2020 Elliot was diagnosed with leukemia! Already having other lifelong issues that affect all areas of his life, this is the last thing he needed.

Elliot was born in the summer of 2007. From the start he had trouble feeding and it soon became apparent that his physical development was not what it should be. After several years of back and forwards to the GP he was diagnosed with Ehlers-Danlos Syndrome which meant his muscles were weak and his joints were hyper-mobile. He was also diagnosed with neuromuscular involvement with his muscle problems. As time went by we found him to be dyslexic too which impacts his learning. Also, he was diagnosed with ASD, so now his problems covered pretty much every aspect of his life and development.

As he has grown his muscle tone has deteriorated and he began to use a wheelchair to cover any distance and use postural support setting at school. Eventually we managed to get funding for a powered wheelchair and invested in a wheelchair accessible vehicle so he could be more independent, and we could fully enjoy our family time and trips away.

Of course this became increasingly limited against the background of the COVID-19 pandemic. But everything was in place to make his teenage years easier for him and for us as a family.

Then Elliot developed an unusual swelling around his face. With treatment it went, but then it came back along with a rash on his legs. This time we got the hospital to review him and the results of the test shook us to our core. Leukemia! Elliot never gets a break. So now he is undergoing chemotherapy, enduring multiple hospital admissions due to neutropenic infection where he is isolated from his siblings, due to the COVID risk and facing further physical debilitation as the chemotherapy takes its toll on his body.

His schooling is almost completely on hold apart from the days he feels well enough to concentrate on an online lesson.

So this is where we are now. Awaiting his immune system to recover enough to undergo another round of chemotherapy and with a further three years of therapy to come. The treatment and being away from home is also having a huge impact on his brother Oliver who is 14, and his sister Emily who is 11. They miss him and having the family home together, they also worry about him a lot.

Update 14th June 2021

Elliot is still receiving chemotherapy and blood and platelets transfusions and still spending a lot of time in hospital with complications and or infections. His siblings continue to put up with change at very short notice and us disappearing. 

Continue reading...


Jackson H

26 March 2021

Story Written 2021

Jackson is currently undergoing treatment for T-Cell Acute Lymphoblastic Leukaemia. Diagnosed in February 2020, Jackson has been through quite some journey. After initial diagnosis he picked up some viral infections in March and also tested positive for Covid-19 in April 2020. Jackson presented with a rash on his chest, belly and top of his legs. We kept an eye on it for a day but it didn’t seem to be getting better. After we did the tumbler test and the rash didn’t disappear we took him to A&E where they done some blood tests. It was then we were told the devastating news that Jackson has Leukaemia – other than the rash Jackson was healthy and his usual self. The rash is known as Petechiae. During the the last 11 months since diagnosis Jackson has been through so much. He was very ill in March last year and has a fungal lung infection which he is still receiving treatment for and will be until the end of treatment in 2023. Maintenance had a bumpy start, In October he had positive blood cultures, a bacterial infection in his blood called Pseudomonas Moraxella which took 11 days of antibiotics to clear. At the beginning of December he had an eye infection which landed him in hospital with IV antibiotics. And on New Years Eve he got a temperature with an ear infection, luckily they sent him home a few hours later with oral antibiotics. Jackson’s big sister Ava hasn’t had the best time since Jackson’s diagnosis, she started getting panic attacks and getting upset about death, we took her to see the hospital psychologist and she received art therapy to help. It has got slightly better, but she still has moments of sadness especially with the pandemic still looming over us. Despite all Jackson’s been through he still manages to have a lovely smile on his face and we hope this continues through treatment until 2023 when he will ring that bell.

Continue reading...

Elliot K

19 March 2021

Story Written 2021

Just before Christmas 2020 Elliot was diagnosed with leukemia! Already having other lifelong issues that affect all areas of his life, this is the last thing he needed.

Elliot was born in the summer of 2007. From the start he had trouble feeding and it soon became apparent that his physical development was not what it should be. After several years of back and forwards to the GP he was diagnosed with Ehlers-Danlos Syndrome which meant his muscles were weak and his joints were hyper-mobile. He was also diagnosed with neuromuscular involvement with his muscle problems. As time went by we found him to be dyslexic too which impacts his learning. Also, he was diagnosed with ASD, so now his problems covered pretty much every aspect of his life and development.

As he has grown his muscle tone has deteriorated and he began to use a wheelchair to cover any distance and use postural support setting at school. Eventually we managed to get funding for a powered wheelchair and invested in a wheelchair accessible vehicle so he could be more independent, and we could fully enjoy our family time and trips away.

Of course this became increasingly limited against the background of the COVID-19 pandemic. But everything was in place to make his teenage years easier for him and for us as a family.

Then Elliot developed an unusual swelling around his face. With treatment it went, but then it came back along with a rash on his legs. This time we got the hospital to review him and the results of the test shook us to our core. Leukemia! Elliot never gets a break. So now he is undergoing chemotherapy, enduring multiple hospital admissions due to neutropenic infection where he is isolated from his siblings, due to the COVID risk and facing further physical debilitation as the chemotherapy takes its toll on his body.

His schooling is almost completely on hold apart from the days he feels well enough to concentrate on an online lesson.

So this is where we are now. Awaiting his immune system to recover enough to undergo another round of chemotherapy and with a further three years of therapy to come. The treatment and being away from home is also having a huge impact on his brother Oliver who is 14, and his sister Emily who is 11. They miss him and having the family home together, they also worry about him a lot.

Update 14th June 2021

Elliot is still receiving chemotherapy and blood and platelets transfusions and still spending a lot of time in hospital with complications and or infections. His siblings continue to put up with change at very short notice and us disappearing. 

Continue reading...