Ryder's story

Ryder had been sick with virus-like symptoms and leg pain for just over 5 weeks, in that time we've taken him to the GP 8 or 9 times and mostly they thought it was a virus/unrelated knee injury and later viral arthritis. He was on nurofen or panadol every 5-6 hours day and night and waking with pain needing more nurofen to get back to sleep. He has had an X-ray, urine test and blood test and all were cleared by GP even though the blood test showed high markers for inflammation, but they attributed this still to the virus. Last GP appointment was last Sunday and by then he has also been complaining of stomach and back pain for 2-3 weeks, but by then he was also "stopped up" from a course of penicillin so we waited to see if fixing that fixed the pain.


It didn't, and on a Wednesday in August I called the GP to arrange another blood test as he wasn't getting better plus they had done a paediatrician referral, I told the medical receptionist the story and that I was considering the hospital and she said "you can't work in that state anyway, if it was my child I know what I'd do." So we drove to the RCH.


We now know that nueroblastoma is a 1 in 100,000 disease and most GPs will have never seen it, on top of that by the time the bone pain is felt the cancer has spread to the bones


Ryder was admitted on Wednesday and had an ultrasound that afternoon which after an agonising wait showed a tumour on his adrenal gland (explaining his cranky behaviour lately!). Thursday he went under anaesthetic and had a CT scan, biopsy, bone marrow sample and bone sample and by Friday afternoon they confirmed that Ryder has stage 4 nueroblastoma meaning it has spread to the other parts of his little body. There is one other piece of information we are waiting on which is the status of the tumour itself as there is one type of gene amplification which is harder to treat and more aggressive. We won't know that until Wednesday but it will make no difference to treatment as he is already high-risk and so from what they have said I know they are throwing the full artillery at it.


Ryder has been in a lot of pain. He mostly just wants us to lie with him and cuddle him but he seems to have turned a corner and both got on top of the pain (good hospital  meds) but also seems to finally be kicking an infection giving him constant fevers. He was close to back to normal (which is almost worse in a way as it feels more real) and had a pretty normal bedtime after spending more time awake and getting used to the hospital and all the poking and prodding.


We don't know what the future will bring. Treatment will all up go for 1.5 years so priorities have shifted a lot with what is important in our lives. We are simply hoping for a good response to treatment.


In the meantime we are finding fun times everywhere including rides in a wheelchair and bedside games, he is a very laid back kid and adapts well so we're just trying to normalise it as much as we can. We're also trying to make sure Caden feels included and loved. 


Jarrad and I are a united front in what is best for the boys and other family have come together too in order to support us. So many people have offered to help. Thank you to everyone that has stopped what they are doing to make sure we're ok. I'm myself still in shock so just being as practical and positive as I can while getting used to the idea of a "new normal". We've both had our moments of emotion but are being strong for our boys. We will keep everyone updated and thank you again for your support.

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