Shaun's Dream Holiday
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Welcome to my Son Shaun's fundraising page.
Hi, my name is Tracy Garner and my son’s name is Shaun Garner
I am in the process of organising a fundraising event to raise funds for my son to access his dream holiday, but also to raise awareness of Teenage Cancer and to raise funds for the Teenage Cancer Trust - Charity No: 1062559.
My Daughter is also doing the brave the shave and donating her hair to the princess trust, upon raising the required amount.
My son has been diagnosed with ALL – which is Acute Lymphoblastic Leukaemia, not just once but twice.
His first diagnosis was June 2011 when he was aged just 9 years old, he underwent 3 plus years of intensive chemotherapy and eventually went into remission, but not without its scars on him. Once in remission it was then discovered that his puberty and overall body growth had been affected from the chemotherapy and he was presenting with bone growth delay, he is two years behind his peers. Just as he was coming to terms with this and the idea of needing to have injections to encourage his growth and beginning to try to get back to living a normal life again, the dreaded Cancer came back.
He was diagnosed with Relapsed ALL in May of last year (2017) and we were told from the off that he would have to be treated at The Royal Manchester Children’s hospital under a specialist team, who were running trials and that without a shadow of a doubt he would most definitely need to have a bone marrow transplant for him to have any chance of fighting and surviving the Leukaemia this time round.
He thankfully met the criteria to be accepted on to one of their trials and to have the bone marrow transplant.
Prior to being referred to Manchester Children’s hospital, Shaun underwent surgery at Alder Hey Children’s hospital to insert a dual lumen Hickman line into his chest which is attached via the jugular vein and the junction near the atrium of the heart, this is used for all blood extractions, blood products being received by Shaun and all medication including chemotherapy and his impending transplant.
During his visit to surgery Shaun also underwent an extraction of sperm to freeze for when he’s older, as due to the previous 3 years of chemotherapy treatment he has already received and the impending forthcoming chemotherapy and radiation treatment along with the bone marrow transplant, he is about to receive, he was told it was highly likely he would be infertile. This was extremely painful he said, worse than the Hickman line insertion!
He endured 13 gruelling weeks initially as an inpatient, undergoing intensive chemotherapy for many hours each day, then he had, on and off 4 weeks break from hospital at home with oral and IV Chemo via his central line in his chest daily and weekly hospital visits, which was during the lead up to his 16th birthday.
During the 2nd week of September he was again admitted into hospital to begin Full body Irradiation, which included intensive chemotherapy over two days, then three days of two thirty-minute sessions of full body radiation at the Christie's hospital in Manchester, this was to completely wipe out his immune system in preparation for the Bone Marrow Transplant, which my daughter, his older Sister (22 years old) was a match and had agreed to be his donor.
Shaun had the transplant 2 days after his 16 birthday, on the 19th of September… which meant he was extremely ill the day of his birthday from the previous 5 days of chemotherapy and full body radiation.
The transplant worked and up to now has rid him of the Leukaemia, however he now has yet another battle on his hands, he has been suffering with what is called Graft Versus Host Disease – GVHd, which is when the transplanted donor stem cells are rejecting his body, in Shaun’s case they are in fact attacking all of his body and up to now the doctors are struggling to get on top of this…
It has been affecting his skin (severe rash), his eyes (dry, itchy and sore), his gastrointestinal areas (struggling to eat, severe indigestion) and his liver (causing jaundice and high bilirubin levels).
Recently however most of his medication has had to be stopped, due to the anti-rejection drugs which helps fight the GVHd have begun attacking his kidneys, causing Acute renal failure / Direct Kidney injury (alternative name) so he has spent yet more time in hospital.
The future of how to treat him is currently unknown, we are allowing Shaun’s kidneys to recover for the next few weeks.
Unfortunately, the GVHd has reared its ugly head again with a vengeance... while his kidneys are recovering, so at the minute he is in a catch 22 situation, needs the anti-rejection drugs, but his kidneys are struggling when taking them.
The doctors have previously tried and failed a treatment process called ECP Extracorporeal Photopheresis, this process requires Shaun’s blood being removed via the 1st lumen of his Hickman line, filtered through a machine, separated, then the white blood cells are mixed with a liquid medication, then exposed to UV lights and then returned to Shaun via his 2nd lumen from his Hickman line. Although this failed previously, due to his lumen line collapsing it has been suggested that this treatment option should be tried again, in the hope to get ahead of the GVHd.
This illness has stolen so much from my son, not just in time and him missing out on so much of his childhood, but the toll its taken on his body, the short and long term affects both physically and emotionally on him, the school time he has missed, including the last 12 months, meaning he was unable to complete his final year in high school and sit his GCSE’s, however his aspiration and hope is to be able to return to school this coming academic year and study hard to be able to sit his GCSE’s in sixth form. He is struggling with his self-confidence, he doesn’t want to go out when he is really poorly, especially in his wheelchair, just in case he sees someone he knows, he even withdraws from family and friends during his more difficult periods and this in itself is heart-breaking to see as Shaun has such a powerful, loving and caring nature and personality, where everyone warms to him instantly.
You now have a brief synopsis of who my son is and the basics of what he’s been through and still going through, although we don’t as yet know his outcome, obviously hopeful for full recovery and complete remission, However I don’t want to have to raise money in memory of him, … I would like to give him something special to look forward to for him to keep wanting to fight to overcome all of this and to be able to experience something truly amazing at the end of his battles.
The reason for the fundraising event is to raise funds for him to go on a once in a lifetime holiday of his choosing this coming December. He has been nominated to a Charity called Give Kids the World, in order to access his dream holiday.
However although the majority of the cost of the holiday is at an extremely reduced cost to us, we have to in accordance with the charities criteria, fundraise an amount of money nearing a £1000 as a support fee which is paid directly to the charity give kids the world and in addition to this fundraise his flight and health/travel insurance money.
This is the main reason for the fundraising event, however anything raised above the required amount that is needed for the support fee for the Give Kids the World Charity, flights and travel insurance for Shaun, we will also be making a donation to The Teenage Cancer Trust.
The Event will consist of fun activities for all the family in the day – Bouncy castle, large outdoor games area, sweetshop, up and coming local D.J with music, cake sale, tombola.
In the evening a D.J and Local musicians/artists performing live music, dancing, an auction, bingo, play your cards right and a buffet.
The highlight of the event is Shaun’s sister who was his donor is doing the Brave the Shave and shaving all her hair off live during the evening and donating it to the Little Princess trust, to be witnessed by all who attend.
Thank you very much for reading a little about Shaun's story, if you would like further information about his journey, the dream holiday we are hoping he will be able to experience and the fundraising event that is being held on Saturday July 21st at The Bridgewater Bar, Runcorn, WA7 1SA
Please visit: Facebook and search for:
Shaun's [email redacted]draisingevent
Every donation is greatly appreciated and we as a family Thank you immensely.
Hi, my name is Tracy Garner and my son’s name is Shaun Garner
I am in the process of organising a fundraising event to raise funds for my son to access his dream holiday, but also to raise awareness of Teenage Cancer and to raise funds for the Teenage Cancer Trust - Charity No: 1062559.
My Daughter is also doing the brave the shave and donating her hair to the princess trust, upon raising the required amount.
My son has been diagnosed with ALL – which is Acute Lymphoblastic Leukaemia, not just once but twice.
His first diagnosis was June 2011 when he was aged just 9 years old, he underwent 3 plus years of intensive chemotherapy and eventually went into remission, but not without its scars on him. Once in remission it was then discovered that his puberty and overall body growth had been affected from the chemotherapy and he was presenting with bone growth delay, he is two years behind his peers. Just as he was coming to terms with this and the idea of needing to have injections to encourage his growth and beginning to try to get back to living a normal life again, the dreaded Cancer came back.
He was diagnosed with Relapsed ALL in May of last year (2017) and we were told from the off that he would have to be treated at The Royal Manchester Children’s hospital under a specialist team, who were running trials and that without a shadow of a doubt he would most definitely need to have a bone marrow transplant for him to have any chance of fighting and surviving the Leukaemia this time round.
He thankfully met the criteria to be accepted on to one of their trials and to have the bone marrow transplant.
Prior to being referred to Manchester Children’s hospital, Shaun underwent surgery at Alder Hey Children’s hospital to insert a dual lumen Hickman line into his chest which is attached via the jugular vein and the junction near the atrium of the heart, this is used for all blood extractions, blood products being received by Shaun and all medication including chemotherapy and his impending transplant.
During his visit to surgery Shaun also underwent an extraction of sperm to freeze for when he’s older, as due to the previous 3 years of chemotherapy treatment he has already received and the impending forthcoming chemotherapy and radiation treatment along with the bone marrow transplant, he is about to receive, he was told it was highly likely he would be infertile. This was extremely painful he said, worse than the Hickman line insertion!
He endured 13 gruelling weeks initially as an inpatient, undergoing intensive chemotherapy for many hours each day, then he had, on and off 4 weeks break from hospital at home with oral and IV Chemo via his central line in his chest daily and weekly hospital visits, which was during the lead up to his 16th birthday.
During the 2nd week of September he was again admitted into hospital to begin Full body Irradiation, which included intensive chemotherapy over two days, then three days of two thirty-minute sessions of full body radiation at the Christie's hospital in Manchester, this was to completely wipe out his immune system in preparation for the Bone Marrow Transplant, which my daughter, his older Sister (22 years old) was a match and had agreed to be his donor.
Shaun had the transplant 2 days after his 16 birthday, on the 19th of September… which meant he was extremely ill the day of his birthday from the previous 5 days of chemotherapy and full body radiation.
The transplant worked and up to now has rid him of the Leukaemia, however he now has yet another battle on his hands, he has been suffering with what is called Graft Versus Host Disease – GVHd, which is when the transplanted donor stem cells are rejecting his body, in Shaun’s case they are in fact attacking all of his body and up to now the doctors are struggling to get on top of this…
It has been affecting his skin (severe rash), his eyes (dry, itchy and sore), his gastrointestinal areas (struggling to eat, severe indigestion) and his liver (causing jaundice and high bilirubin levels).
Recently however most of his medication has had to be stopped, due to the anti-rejection drugs which helps fight the GVHd have begun attacking his kidneys, causing Acute renal failure / Direct Kidney injury (alternative name) so he has spent yet more time in hospital.
The future of how to treat him is currently unknown, we are allowing Shaun’s kidneys to recover for the next few weeks.
Unfortunately, the GVHd has reared its ugly head again with a vengeance... while his kidneys are recovering, so at the minute he is in a catch 22 situation, needs the anti-rejection drugs, but his kidneys are struggling when taking them.
The doctors have previously tried and failed a treatment process called ECP Extracorporeal Photopheresis, this process requires Shaun’s blood being removed via the 1st lumen of his Hickman line, filtered through a machine, separated, then the white blood cells are mixed with a liquid medication, then exposed to UV lights and then returned to Shaun via his 2nd lumen from his Hickman line. Although this failed previously, due to his lumen line collapsing it has been suggested that this treatment option should be tried again, in the hope to get ahead of the GVHd.
This illness has stolen so much from my son, not just in time and him missing out on so much of his childhood, but the toll its taken on his body, the short and long term affects both physically and emotionally on him, the school time he has missed, including the last 12 months, meaning he was unable to complete his final year in high school and sit his GCSE’s, however his aspiration and hope is to be able to return to school this coming academic year and study hard to be able to sit his GCSE’s in sixth form. He is struggling with his self-confidence, he doesn’t want to go out when he is really poorly, especially in his wheelchair, just in case he sees someone he knows, he even withdraws from family and friends during his more difficult periods and this in itself is heart-breaking to see as Shaun has such a powerful, loving and caring nature and personality, where everyone warms to him instantly.
You now have a brief synopsis of who my son is and the basics of what he’s been through and still going through, although we don’t as yet know his outcome, obviously hopeful for full recovery and complete remission, However I don’t want to have to raise money in memory of him, … I would like to give him something special to look forward to for him to keep wanting to fight to overcome all of this and to be able to experience something truly amazing at the end of his battles.
The reason for the fundraising event is to raise funds for him to go on a once in a lifetime holiday of his choosing this coming December. He has been nominated to a Charity called Give Kids the World, in order to access his dream holiday.
However although the majority of the cost of the holiday is at an extremely reduced cost to us, we have to in accordance with the charities criteria, fundraise an amount of money nearing a £1000 as a support fee which is paid directly to the charity give kids the world and in addition to this fundraise his flight and health/travel insurance money.
This is the main reason for the fundraising event, however anything raised above the required amount that is needed for the support fee for the Give Kids the World Charity, flights and travel insurance for Shaun, we will also be making a donation to The Teenage Cancer Trust.
The Event will consist of fun activities for all the family in the day – Bouncy castle, large outdoor games area, sweetshop, up and coming local D.J with music, cake sale, tombola.
In the evening a D.J and Local musicians/artists performing live music, dancing, an auction, bingo, play your cards right and a buffet.
The highlight of the event is Shaun’s sister who was his donor is doing the Brave the Shave and shaving all her hair off live during the evening and donating it to the Little Princess trust, to be witnessed by all who attend.
Thank you very much for reading a little about Shaun's story, if you would like further information about his journey, the dream holiday we are hoping he will be able to experience and the fundraising event that is being held on Saturday July 21st at The Bridgewater Bar, Runcorn, WA7 1SA
Please visit: Facebook and search for:
Shaun's [email redacted]draisingevent
Every donation is greatly appreciated and we as a family Thank you immensely.
Fundraising team: Shaun's Cancer Journey (2)
Tracy Garner
Organizer
England
Beck Garner
Team member
