Ryder's Journey - US trial

$135,995 of $300,000 goal

Raised by 1,910 people in 19 months


History

Ryder is a happy, easy-going and intelligent boy who loves Lego and is destined for a career in engineering. He loves playing with his idol - his 6 year old brother Caden.

He had just turned 3 when he was diagnosed with stage 4 high risk neuroblastoma, a rare and very aggressive childhood cancer.

We were turned away by GPs eight times in 5 weeks, all telling us he had a virus and to ‘wait it out.’ By the time he got to hospital, he had a 6cm tumour in his stomach, and 100% of his body was riddled with cancer. 

Ryder was in excruciating pain and went straight from being on Nurofen every 5 hours, to around-the-clock pain relief with nerve pain medication and a morphine drip.

From our initial relief to knowing what was wrong with Ryder, we were quickly plunged into a time of dark days, as we began to learn about neuroblastoma. It is not a good card to be dealt.




About Neuroblastoma

Neuroblastoma is a cancer of newly developing nerve cells, and as such typically hits very young children.

It is the leading cause of death from cancer in children under 5.

This cancer often initially responds well to chemo, but is insidious and very difficult to hold off for good.

Despite a gruelling 18 month treatment to clear kids and try to prevent a relapse, the average time to relapse is only 9-12 months. Once a child relapses, not only do treatment options dwindle, but it is almost always terminal.

Australian children are relapsing often and dying now from neuroblastoma and sadly lives have already been lost in Australia this year.

While many other cancers are experiencing better cure rates in recent times, neuroblastoma survival rates remain at only 40-50%.

The key to increasing these odds is to stop these children relapsing.

Where we are now - April 2018

Ryder has just turned 4 – he spent his birthday on Easter Monday at Peter Mac receiving radiation therapy.

He has endured 7 rounds of chemo, a bone marrow transplant, surgery and radiation therapy since August 2017, spending most of his time in and out of hospital. He has lost weight, lost his hair, spent over 200 days in hospital, has nightmares about his cords coming out of his tummy and him dying. He remembers nothing before his life with cancer.

Ryder is currently in remission and had just commenced a 6 month treatment called immunotherapy. He is already at risk of relapsing - even while still within treatment.

His tumour biopsy report states that his tumour has chromosomal changes I that indicate a ‘higher risk of relapse.’

Ryder is unaware of the 1 in 2 chance of his cancer returning, and unaware that if that happened he would likely spend the rest of what is likely to be a very short life in hospital. He just wants to start kinder and to stop spending nights in hospital, away from his home and his brother.




About the Trial

There are no options in Australia to address the neuroblastoma 1 in 2 relapse rate.

Ryder’s best chance of not relapsing, and therefore surviving, is a trial running in the USA which is showing extraordinarily good results in keeping kids clear for years longer than before.

The neuroblastoma world specialists are at Memorial Sloan Kettering, a hospital in New York which sees over 125 new cases of this rare cancer a year. They have 5 Neuroblastoma experts on site and the man recognised as the best neuroblastoma surgeon in the world.

MSK has completed and published a phase 1 trial with children who have already relapsed with Neuroblastoma once and been cleared a second time (these are considered extremely tough cases). These kids would be expected to relapse again within a very short timeframe (months). The study (link below) shows these kids remaining relapse-free almost 3 years later.

This is promising data. Organisations we have spoken to agree that this is a trial any Neuroblastoma child should be involved in, which may very likely save their lives.

Phase 2 of the trial (link below) involves testing this same vaccine on kids who have been cleared for the first time of Neuroblastoma (like Ryder). We have had advice from organisations around the world that Ryder is eligible, will be accepted and SHOULD do this trial, however we can manage it.

The vaccine is given 7 times over 12 months, at weeks 1, 2, 3, 8, 20, 33 & 52. Our plan at this point is to stay in the US for the first 3 weeks then travel back and forth.

The vaccine has zero toxicity and minimal side effects, none of which last more than 24hrs.

The cost as an international patient is US$160,000 – around AU$225,000. This is due in September, paid in full before starting, and is actually negotiated down from a MUCH bigger figure by another Australian family, who are based in Brisbane and are about to finish their 12 month participation in the trial.  Their son remains cancer-free.

Our fundraising target figure of $300k is around US$235k and is the amount we’ve been quoted from similar cases as the absolute minimum to cover the trial and the travel. But the absolute MUST DO for us, is the US$160k by September, to pay the deposit for the trial.

We do not have a house to sell, or have wealthy family to ask. We are quite literally down to asking for help from strangers.

Please help us. We are desperate to give Ryder a chance at a long life, free from trauma and worries that no child should have to face.

We are seeking people to help by organising a fundraiser in Ryder's name.  Please contact us directly, if we can assist with any information, photographs, etc.



Read More

Please consider donating blood. Click here to find out where: www.donateblood.com.au

Find out more about Neuroblastoma: neuroblastoma.org.au & ccia.org.au/neuroblastoma-our-battle

Contact

Please send us a message via Go Fund Me if you would like to get in touch.

Or contact Katherine Doe (Ryder’s mum) katherinetgrace@icloud.com or Jarrad Grace (Ryder’s Dad) jarrad.grace@gmail.com

You can also join our private group on Facebook (all welcome) to follow Ryder’s story and/or follow our Facebook Page for updates on fundaising events.

m.facebook.com/groups/123001021660982

https://www.facebook.com/SuperEventsForRyder

References

Phase 1 trial paper - http://clincancerres.aacrjournals.org/content/20/5/1375.long

Phase 2 trial information - https://clinicaltrials.gov/ct2/show/NCT00911560

New York hospital information - https://www.mskcc.org/pediatrics/cancer-care/types/neuroblastoma
+ Read More
We’re so sorry that it’s been such a long time since we’ve done an update. Following Ryder’s clear scans at the end of treatment in late October, we were finally able to speak to the hospital in New York about him being accepted into the trial. We were then quoted over AU$300,000 just for the hospital costs (which would have left us unable to travel there) and had to negotiate down by over $50,000!

In a flurry of stress we got medical records emailed and scans posted to America, and paid a massive amount of money to the hospital. And got the kids passports! We then spent 4.5 weeks over November and December in New York, which thanks to your support was able to be Ryder’s 6yo brother as well, instead of him being left behind and the brothers enduring another separation... that visit Ryder experienced the rather brisk style of that hospital there over several appointments, the first 3 vaccine injections and testing of his bone marrow in 4 spots. And while injections are very painful which is hard, it was an extremely emotional moment finally being there, in New York, getting this vaccine!!! Thank you

We have since completed 2 more trips for vaccines and bone marrows, with two more to go (July and November). Following that we may try to get Ryder some additional maintenance therapy but this will depend on whether he will be accepted. The risk of relapse is still very real and in fact now, while he is the picture of health, is the biggest danger period for that. In Australia we are now fully aware that a relapse means a 0% survival rate so it is still our biggest priority to prevent that from happening. The vaccine is giving us comfort at the money that we are simply doing ALL we can.

Other families in various countries have since contacted us and we’ve been able to help them on their own journeys to research and fundraise a little, which has been very gratifying for us. Way too much pressure is on parents to decide on treatments and to make the funds happen but unfortunately that is what it is at the moment.

Once our medical and travel costs cease we will be holding Ryder’s funds for a few years until he is officially in the clear - that is 5-6 years after treatment nowadays for neuroblastoma because it is so aggressive and prone to returning. After that we will honour our many many friends who have lost their children from the inadequate and toxic treatments by donating any remaining funds to childhood cancer research.

Please feel free to contact us if you’d like to know more. Thank you so much for your support over the last 2 years, we could never have done this without every one of you.
+ Read More
Advances in Neuroblastoma Research 2018

Thank you so much for being a part of our son's support network. We would like to update all our supporters on the latest information on Ryder's trial...

Jarrad and I have both always agreed that we would leave no stone unturned in finding the best treatment for Ryder, to ensure he lives a long and happy life.

Each year, paediatric medical experts meet specifically to look at neuroblastoma, once of the most aggressive childhood cancers and one which hasn't seen improved survival rates for many many years.

The ANR conference is all about sharing the latest studies and findings from the key cancer hospitals in the USA and Europe, with the hope of making significant improvements to the (still very poor) survival rates, and eventually in finding a cure.

Thanks to the never-ending support of Clean & Gone and with the help of Action Victoria (and family for helping with the boys
The 2018 Neuroblastoma Conference
Facing some sad truths about survival
Heartening new data about the vaccine!
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Hi Everyone,

We’ve just done an update on the Go Fund Me page which is why you are all possibly seeing it again!

The update gives a better overview of the trial and why we want to do it, for Ryder and also for other Australian kids who are dealt the very average hand of Neuroblastoma. It also tells everyone where Ryder is at treatment wise.

Thank you so much for your support, we are over 1/3 of the way to our $225,000 deposit for the trial due in September already - we WILL get this done and get him there!

Katherine xx
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THANK YOU to every one of you for your shares, words of support and donations. We have been amazed and overwhelmed by the love and kindness of friends and strangers. Every $5 or $500 means the world as we know it is everything you can spare and you are choosing to give it to Ryder!! We are well on our way and are now sure we will eventually reach our goal. Stay tuned for events etc. Thank you again xxx
+ Read More
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