The F&@! cancer campaign for Jarryd
Donation protected
My name is Bronny and Jarryd is my son. My eldest of 3 boys. He loves basketball (Boston Celtics), he loves music, and he loves his dog (also called Boston).
He’s a good kid, thoughtful and funny.
We’re hoping to raise enough money to allow Jarryd to trial a medication that is not freely available to all cancer patients.
Here’s our story:
In March 2018, Jarryd was diagnosed with Ewing’s Sarcoma, an uncommon form of bone cancer
that mostly affects young people.
The main tumor was in his hip. For 2 years he had been having some pain and was told that it was sciatica.
By the time he was diagnosed, the cancer had spread to his lungs and was at stage 4.
Jarryd was immediately started on an intensive chemotherapy regime in Melbourne (there are few specialist sarcoma units in Australia). 12 months of chemo, every 3 weeks, was recommended.
We travelled back and forth to Melbourne from Port Stephens, which was difficult for our entire family, but the treatment appeared to be working and at each scan we received positive news. The spots on his lungs continued to shrink and finally the tumor in his hip was small enough that surgeons were prepared to operate.
In September 2018, the surgery took place. The surgeon removed the right side of Jarryd’s pelvic bone and created a ‘scaffold’ to hold him back together using bone from his lower leg. There are only 2 surgeons in the country prepared to perform this procedure, Our surgeon was incredible and we are truly grateful.
Following surgery, Jarryd was required to spend 3 months in a fiberglass body cast. He couldn’t move. He couldn’t roll over, he couldn’t wash, he couldn’t use the toilet. We were in Melbourne, away from home, away from our family, for months during this process. It was a difficult time.
Finally, at the end of December, the cast came off. Rehab followed, and Jarryd had to learn to walk again. He was amazing and proved time and time again how determined he was!
Ultimately though, the surgery was successful. The entire tumor was removed and was considered 100% inactive.
Chemo continued for 3 more months, and with continued good results in his lungs, he was finally declared “cancer free”.
The joy was short lived.
3 months later, June 2019, follow-up scans showed that the cancer in his lungs had returned. He was feeling so well however, without the scans, he would never have known that he was sick again.
This time, they allowed us to transfer treatment to Newcastle...much easier, much closer to home.
We were told though, that we were running out of options. The chemo available was not likely to have great results. Jarryd decided to not jump into it....he was feeling well, and was happy to continue being monitored for a time. He would save his ‘Last Defence’ for if and when he really needed it. Doctors were happy with this decision.
In October, Jarryd and his brothers went to a friends 21st birthday party. They had to travel a fair distance to get there, so spent the night. By the time they got home the following day, Jarryd could barely stay awake and slept all afternoon. When he finally woke, he was muttering and mumbling and not making any sense. He started to worry us.
As things seemed to deteriorate, we called an ambulance.
By the middle of the night, the doctors called us in to tell us that Jarryd had a tumor on his brain. They told us that it was bleeding and that he would probably not survive the night. He was having regular seizures and was unable to speak. They suggested we call family in. We had to ring and wake his younger brothers and grandparents and ask them to come to the hospital as soon as they could.
Jarryd survived the night.
As the next day progressed, Jarryd’s condition continued to deteriorate. They decided that emergency surgery to control the bleeding was necessary. They were unable to scan properly because of seizures, but told us that if they could remove tumor, they would.
Again, surgery was a success!
The tumor was removed and Jarryd was up and about and home (with an impressive scar across his head) within a week.
We went back to chemo. Every 3 weeks for a week at a time. Fingers were crossed that it would work to some degree.
We were offered the opportunity to have tests done in Boston USA. For this test, they would send specimens of Jarryd’s tumors which would be analyzed to show the doctors whether any other drugs, not currently used for Ewing’s Sarcoma, might have a positive effect and treat his cancer. The doctors would be able to apply on a compassionate basis to be able to use these drugs if there was any evidence that any might help. The test cost $7500, but we had no guarantees.
A big issue is that Ewing’s is quite rare...too uncommon to receive funding for research, so doctors know little about it.
Scans were scheduled following the 3rd round of treatment. He had those scans on the Friday and was scheduled to discuss results with doctor the following Tuesday.
Saturday, we were woken at 2am by Jarryd having a seizure.
We called the ambulance and a hospital stay and medication to control the seizures followed.
We finally met with the doctors.
We were told that the chemo treatment was not working. We were told that a new tumor had begun to grow in Jarryd’s brain. We were told that the spots in his lungs had continued to grow.
We were also told that the test from Boston showed very little to help.
A glimmer of hope though....there was one (out of about 350 tested in Boston) genetic mutation that showed a similarity to something found in Ovarian Cancer. A drug that is used to treat Ovarian Cancer may just be able to be used to treat Ewing’s.
We have no idea if it will work...but there is that genetic similarity that suggests it just might.
The drug is on the PBS scheme for other cancers, but not for Jarryd’s cancer. We will need to trial it for a minimum of 2 months. If successful, we may continue for a period of time, but the cost to us is $7500 per month. We are hoping to raise enough money to continue 6 months worth of treatment.
If after 2 months of trial there is no success, the treatment will be stopped.
If we have raised more money than we need, the excess will be donated to either Red Kite ( who have been a massive help to Jarryd over the past 2 years) or directly to the hospital to be used for inpatient facilities. It makes such a difference for inpatients having a fridge to use, or TVs that work, or nice spaces to go to just hang out while in hospital for extended periods of time.
I would also like to put it out there that I am so, so, so proud of Jarryd. The most positive attitude right from the start, and the determination to get through every crappy thing that’s been thrown at him.
I’m also incredibly proud of his 2 younger brothers.As Jed works towards his HSC this year and Jai heads into Year 6, they both continue to deal with and handle an incredible amount of stuff that young people shouldn’t have to. I really do have 3 incredible sons.
Jarryd’s girlfriend, Jaz, is also an incredible person. She’s been so tough and so brave and always handles every situation in the most calm and mature way. Jarryd is a lucky guy!!
I’d also like it to be known that right from the very start, Jarryd has listened to his doctors but had also taken responsibility for his own health and well-being. He’s completely overhauled his diet, cutting all sugars and junk food...not always an easy task for a young person to do. He’s done many other things to keep himself as healthy and strong as possible, to keep his immune system strong and to be in the best possible position to deal with whatever came his way. I really think this has all made such a huge difference.
We’ve got our fingers crossed that we can access this trial drug and that it will give Jarryd the break that he desperately needs.
Thank you to everyone who feels they can contribute. xxx
He’s a good kid, thoughtful and funny.
We’re hoping to raise enough money to allow Jarryd to trial a medication that is not freely available to all cancer patients.
Here’s our story:
In March 2018, Jarryd was diagnosed with Ewing’s Sarcoma, an uncommon form of bone cancer
that mostly affects young people.
The main tumor was in his hip. For 2 years he had been having some pain and was told that it was sciatica.
By the time he was diagnosed, the cancer had spread to his lungs and was at stage 4.
Jarryd was immediately started on an intensive chemotherapy regime in Melbourne (there are few specialist sarcoma units in Australia). 12 months of chemo, every 3 weeks, was recommended.
We travelled back and forth to Melbourne from Port Stephens, which was difficult for our entire family, but the treatment appeared to be working and at each scan we received positive news. The spots on his lungs continued to shrink and finally the tumor in his hip was small enough that surgeons were prepared to operate.
In September 2018, the surgery took place. The surgeon removed the right side of Jarryd’s pelvic bone and created a ‘scaffold’ to hold him back together using bone from his lower leg. There are only 2 surgeons in the country prepared to perform this procedure, Our surgeon was incredible and we are truly grateful.
Following surgery, Jarryd was required to spend 3 months in a fiberglass body cast. He couldn’t move. He couldn’t roll over, he couldn’t wash, he couldn’t use the toilet. We were in Melbourne, away from home, away from our family, for months during this process. It was a difficult time.
Finally, at the end of December, the cast came off. Rehab followed, and Jarryd had to learn to walk again. He was amazing and proved time and time again how determined he was!
Ultimately though, the surgery was successful. The entire tumor was removed and was considered 100% inactive.
Chemo continued for 3 more months, and with continued good results in his lungs, he was finally declared “cancer free”.
The joy was short lived.
3 months later, June 2019, follow-up scans showed that the cancer in his lungs had returned. He was feeling so well however, without the scans, he would never have known that he was sick again.
This time, they allowed us to transfer treatment to Newcastle...much easier, much closer to home.
We were told though, that we were running out of options. The chemo available was not likely to have great results. Jarryd decided to not jump into it....he was feeling well, and was happy to continue being monitored for a time. He would save his ‘Last Defence’ for if and when he really needed it. Doctors were happy with this decision.
In October, Jarryd and his brothers went to a friends 21st birthday party. They had to travel a fair distance to get there, so spent the night. By the time they got home the following day, Jarryd could barely stay awake and slept all afternoon. When he finally woke, he was muttering and mumbling and not making any sense. He started to worry us.
As things seemed to deteriorate, we called an ambulance.
By the middle of the night, the doctors called us in to tell us that Jarryd had a tumor on his brain. They told us that it was bleeding and that he would probably not survive the night. He was having regular seizures and was unable to speak. They suggested we call family in. We had to ring and wake his younger brothers and grandparents and ask them to come to the hospital as soon as they could.
Jarryd survived the night.
As the next day progressed, Jarryd’s condition continued to deteriorate. They decided that emergency surgery to control the bleeding was necessary. They were unable to scan properly because of seizures, but told us that if they could remove tumor, they would.
Again, surgery was a success!
The tumor was removed and Jarryd was up and about and home (with an impressive scar across his head) within a week.
We went back to chemo. Every 3 weeks for a week at a time. Fingers were crossed that it would work to some degree.
We were offered the opportunity to have tests done in Boston USA. For this test, they would send specimens of Jarryd’s tumors which would be analyzed to show the doctors whether any other drugs, not currently used for Ewing’s Sarcoma, might have a positive effect and treat his cancer. The doctors would be able to apply on a compassionate basis to be able to use these drugs if there was any evidence that any might help. The test cost $7500, but we had no guarantees.
A big issue is that Ewing’s is quite rare...too uncommon to receive funding for research, so doctors know little about it.
Scans were scheduled following the 3rd round of treatment. He had those scans on the Friday and was scheduled to discuss results with doctor the following Tuesday.
Saturday, we were woken at 2am by Jarryd having a seizure.
We called the ambulance and a hospital stay and medication to control the seizures followed.
We finally met with the doctors.
We were told that the chemo treatment was not working. We were told that a new tumor had begun to grow in Jarryd’s brain. We were told that the spots in his lungs had continued to grow.
We were also told that the test from Boston showed very little to help.
A glimmer of hope though....there was one (out of about 350 tested in Boston) genetic mutation that showed a similarity to something found in Ovarian Cancer. A drug that is used to treat Ovarian Cancer may just be able to be used to treat Ewing’s.
We have no idea if it will work...but there is that genetic similarity that suggests it just might.
The drug is on the PBS scheme for other cancers, but not for Jarryd’s cancer. We will need to trial it for a minimum of 2 months. If successful, we may continue for a period of time, but the cost to us is $7500 per month. We are hoping to raise enough money to continue 6 months worth of treatment.
If after 2 months of trial there is no success, the treatment will be stopped.
If we have raised more money than we need, the excess will be donated to either Red Kite ( who have been a massive help to Jarryd over the past 2 years) or directly to the hospital to be used for inpatient facilities. It makes such a difference for inpatients having a fridge to use, or TVs that work, or nice spaces to go to just hang out while in hospital for extended periods of time.
I would also like to put it out there that I am so, so, so proud of Jarryd. The most positive attitude right from the start, and the determination to get through every crappy thing that’s been thrown at him.
I’m also incredibly proud of his 2 younger brothers.As Jed works towards his HSC this year and Jai heads into Year 6, they both continue to deal with and handle an incredible amount of stuff that young people shouldn’t have to. I really do have 3 incredible sons.
Jarryd’s girlfriend, Jaz, is also an incredible person. She’s been so tough and so brave and always handles every situation in the most calm and mature way. Jarryd is a lucky guy!!
I’d also like it to be known that right from the very start, Jarryd has listened to his doctors but had also taken responsibility for his own health and well-being. He’s completely overhauled his diet, cutting all sugars and junk food...not always an easy task for a young person to do. He’s done many other things to keep himself as healthy and strong as possible, to keep his immune system strong and to be in the best possible position to deal with whatever came his way. I really think this has all made such a huge difference.
We’ve got our fingers crossed that we can access this trial drug and that it will give Jarryd the break that he desperately needs.
Thank you to everyone who feels they can contribute. xxx
Organizer and beneficiary
Jazmin Freeman
Organizer
Bobs Farm NSW
Bronny Starling
Beneficiary
