Forgo a coffee for Josh
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My name is Karen.
My sister Lynda and her family are going through the most unimaginable time right now.
My nephew has a rare cancer and treatment options have been exhausted leaving him with very limited time to share with his family and friends.
Josh is only 15.
There are so many things in life Josh hasn't had a chance to do. He got one of his wishes last week and spent 2 nights on a houseboat. He loved it.
This is Lynda's account of Josh's journey so far.
Please, if you can help out, even just the cost of a cup of coffee AND a share to your friends, we would all be forever grateful.
Written by Josh's Mum, my sister Lynda.
My Son Josh was diagnosed with a cic dux sarcoma in January, it had attached itself to his left kidney. By the time we discovered the tumour it was very large and pushing his diaphragm up that high that is was crushing his left lung and his heart was almost under his chin. Within 24 hours of arriving at the QLD Children’s hospital he was in theatre having a biopsy done, the next day we were given the devastating news that it was cancer. The following day he was back in theatre having a central veinous line inserted and a bone marrow esprit performed. After this procedure Josh ended up in ICU as his lung was almost collapsed and he was struggling to breath. Despite Josh being very sick, the next day we started chemo. He had 3 days of chemo and was moved to the ward. A week later we had another cycle of chemo before being discharged to local charity accommodation “Childhood Cancer Support”, what an amazing organisation. A week later we started a five day straight chemo regimen. Josh was on heavy pain medication due to the size of the tumour and the pressure it was putting on his spine. For this particular chemo he had to have hyper-hydration 24 hours a day which caused him to pee every 15 minutes all day every day, he was so sleep deprived and drugged up on pain medication he had no idea where he was or what he was doing. It was one of the hardest weeks we have ever endured. Unfortunately chemo isn’t overly effective on the type of tumour Josh has, it is a very rare type of cancer and extremely aggressive, despite the chemo it had actually gotten bigger by the next scan, they decided an operation was essential so within 7 weeks of diagnosis we were back in theatre this time for a surgery that lasted 14 hours. The tumour was over 10 kilos, it had impacted on many other organs so he also had his kidney removed, his spleen, tail of his pancreas, parts of his liver and stomach, a complete rebuild of his diaphragm and removal of his colon which left him with a stoma bag. He spent 7 days in intensive care, he was supposed to be asleep for the first 24 hours but his blood pressure kept dropping to low so even though he still had the breathing tube in he was awake. He also had a chest drain in his side draining fluid from his lung unfortunately this wasn’t adequate and over the course of the first few days he had another 2 chest drain tubes inserted. Eventually he was moved to the ward where he spent a further 11 days, his scar is from his pelvis straight through his belly button and up to his breast bone then across to under his arm. His amazing surgeon removed everything she could see but unfortunately 2 outer rims from all that were removed were not clear of tumour cells. 2 weeks later we started 20 days of radiation, every day Monday to Friday over 4 weeks. Side effects of radiation is diarrhoea and vomiting, eating was always a struggle but by now near none existent and the weight fell off him. We started treatment back in January at 83 kilos and post radiation 55 kilos. It took several weeks for the side effects of radiation to ease. We were finally able to head home for the first time in 4 months before a rescan showed that more lesions had formed back on his liver. They decided to try a different type of chemo, one that had been trialled in the UK, we also signed up to a PRISM study that looks at the DNA of the tumour compared to that of Josh. They only carry out these type of studies on rare cancers that don’t have a very good survival rate so this was very confronting. Before starting his next chemo we asked if his stoma could be reversed, thankfully they agreed so back to theatre he went. He recovered really well from this surgery but his bowel took about a month to settle and work properly. We started chemo on Monday 20th July, he had five consecutive days of chemo, then we had 2 weeks off before the process was repeated, we completed 2 cycles and have just had a rescan to see if there had been any effect before starting cycle 3. We had a meeting with all relevant specialist on Friday 29th August only to be told that the chemo was ineffective and that not only had the existing tumours grown substantially but there were more tumours within his abdomen and that there was no treatment options left. They are unable to tell us how long he has, they said the next few weeks would tell and we need to do things now while he is well. He had his central line out yesterday so he will be free to enjoy the water again. Words could never explain the emotional and physical toll this has taken on us all but particularly on Josh who has had to endure so much only to be told he can’t beat it.
He is the bravest young man with unbelievable resilience, he is the most loving boy who loves hugs and being close to his family, I have been blessed to have been able to be by his side every single day since his diagnosis and will hold him close until the end.
My sister Lynda and her family are going through the most unimaginable time right now.
My nephew has a rare cancer and treatment options have been exhausted leaving him with very limited time to share with his family and friends.
Josh is only 15.
There are so many things in life Josh hasn't had a chance to do. He got one of his wishes last week and spent 2 nights on a houseboat. He loved it.
This is Lynda's account of Josh's journey so far.
Please, if you can help out, even just the cost of a cup of coffee AND a share to your friends, we would all be forever grateful.
Written by Josh's Mum, my sister Lynda.
My Son Josh was diagnosed with a cic dux sarcoma in January, it had attached itself to his left kidney. By the time we discovered the tumour it was very large and pushing his diaphragm up that high that is was crushing his left lung and his heart was almost under his chin. Within 24 hours of arriving at the QLD Children’s hospital he was in theatre having a biopsy done, the next day we were given the devastating news that it was cancer. The following day he was back in theatre having a central veinous line inserted and a bone marrow esprit performed. After this procedure Josh ended up in ICU as his lung was almost collapsed and he was struggling to breath. Despite Josh being very sick, the next day we started chemo. He had 3 days of chemo and was moved to the ward. A week later we had another cycle of chemo before being discharged to local charity accommodation “Childhood Cancer Support”, what an amazing organisation. A week later we started a five day straight chemo regimen. Josh was on heavy pain medication due to the size of the tumour and the pressure it was putting on his spine. For this particular chemo he had to have hyper-hydration 24 hours a day which caused him to pee every 15 minutes all day every day, he was so sleep deprived and drugged up on pain medication he had no idea where he was or what he was doing. It was one of the hardest weeks we have ever endured. Unfortunately chemo isn’t overly effective on the type of tumour Josh has, it is a very rare type of cancer and extremely aggressive, despite the chemo it had actually gotten bigger by the next scan, they decided an operation was essential so within 7 weeks of diagnosis we were back in theatre this time for a surgery that lasted 14 hours. The tumour was over 10 kilos, it had impacted on many other organs so he also had his kidney removed, his spleen, tail of his pancreas, parts of his liver and stomach, a complete rebuild of his diaphragm and removal of his colon which left him with a stoma bag. He spent 7 days in intensive care, he was supposed to be asleep for the first 24 hours but his blood pressure kept dropping to low so even though he still had the breathing tube in he was awake. He also had a chest drain in his side draining fluid from his lung unfortunately this wasn’t adequate and over the course of the first few days he had another 2 chest drain tubes inserted. Eventually he was moved to the ward where he spent a further 11 days, his scar is from his pelvis straight through his belly button and up to his breast bone then across to under his arm. His amazing surgeon removed everything she could see but unfortunately 2 outer rims from all that were removed were not clear of tumour cells. 2 weeks later we started 20 days of radiation, every day Monday to Friday over 4 weeks. Side effects of radiation is diarrhoea and vomiting, eating was always a struggle but by now near none existent and the weight fell off him. We started treatment back in January at 83 kilos and post radiation 55 kilos. It took several weeks for the side effects of radiation to ease. We were finally able to head home for the first time in 4 months before a rescan showed that more lesions had formed back on his liver. They decided to try a different type of chemo, one that had been trialled in the UK, we also signed up to a PRISM study that looks at the DNA of the tumour compared to that of Josh. They only carry out these type of studies on rare cancers that don’t have a very good survival rate so this was very confronting. Before starting his next chemo we asked if his stoma could be reversed, thankfully they agreed so back to theatre he went. He recovered really well from this surgery but his bowel took about a month to settle and work properly. We started chemo on Monday 20th July, he had five consecutive days of chemo, then we had 2 weeks off before the process was repeated, we completed 2 cycles and have just had a rescan to see if there had been any effect before starting cycle 3. We had a meeting with all relevant specialist on Friday 29th August only to be told that the chemo was ineffective and that not only had the existing tumours grown substantially but there were more tumours within his abdomen and that there was no treatment options left. They are unable to tell us how long he has, they said the next few weeks would tell and we need to do things now while he is well. He had his central line out yesterday so he will be free to enjoy the water again. Words could never explain the emotional and physical toll this has taken on us all but particularly on Josh who has had to endure so much only to be told he can’t beat it.
He is the bravest young man with unbelievable resilience, he is the most loving boy who loves hugs and being close to his family, I have been blessed to have been able to be by his side every single day since his diagnosis and will hold him close until the end.
Organizer
Karen Morrow
Organizer
New South Wales
