Charlies Run 4 Kids- Arlo
Charlie’s Run 4 Kids (CR4K) is a local running group that raises money for a family. Our number one supporter Charlie Carr lost her battle with Neuroblastoma in April 2015. We will continue to run for Charlie and this year we will also be running for Arlo Matthews
Arlo’s story from his Mum Nicole:
Arlo was diagnosed with embryonal rhabdomyosarcoma of the bladder and prostate at only 4 months old. About 3 weeks before he was diagnosed he had a UTI which was discovered by a home dr after a week or so of high temps and belly pain, our doctor wanted to send him for an ultrasound to investigate further as it’s not common for boys to get UTI’s. The results were devastating arlos urine was being blocked by a mass in his bladder which was sending his urine back up to his kidneys.
Our family dr had already organised for arlo to go straight up to the hospital for another ultrasound and had been talking to surgeon John Casey, I had to fast him from than on incase they wanted to operate straight away, they put a catheter in his bladder to try and drain his urine which didn’t work he went down hill really quickly from his kidneys and his whole body was full of fluid.
They took him back in to surgery to put two stents in his ureters with tubes coming out of his sides to drain his urine out, they worked for a short while then stopped working, he was taken up to PICU as he was not good at this point. They took him back in for surgery to attempt to put bigger stents in his ureters which ended up with the same outcome they worked for a little while then stopped.
He was deteriorating fast he was hypertensive and his electrolytes weren’t good he was going in to kidney failure... the doctors spent half the day talking with Westmead to see if their was anything else they could do for him there or send him to Sydney for dialysis. My heart broke our poor boy was so sick. They came up with one last procedure to redirect his urine with two urostomy’s which thankfully was a success.
He started improving and once he was in the clear we went back to the ward, about a week later he started chemo, his protocol goes for 34weeks and he is up to week 26, his last MRI about 4 months ago showed the tumour had not shrunk but at least it hadn’t spread or gotten any bigger.
In two weeks Arlo will be going to Westmead to have an MRI on the 30th April followed by an operation on the 3rd may to get a better look of his bladder with a camera and will hopefully be a good candidate for brachytherapy radiation after his 1st birthday.
Arlo has spent a lot of time in hospital sick it was becoming routine to be in there every second week either sick from his 5 day irinotecan chemo or from a bug/virus and also infections, his biggest issue was bacteria in his urine which his now on a low dose long-term antibiotic for which has helped a lot.
Arlo has struggled a lot with gaining weight and is on a high-calorie formula and on pump feeds, he doesn’t care much for food and doesn’t tolerate much very well so it’s made it quite hard especially with being sick a lot but I know he’ll get there.
Arlo has 3 older siblings, Kaiden is 6.5 years old, Levi is 3.5 years old and Layla is 2 years old they adore him and miss him so much when he's in hospital, it’s really hard for me to leave them so much when I need to stay in hospital with Arlo it’s hard for all of us and my partner chad holds the forte at home with family helping so chad can be at work during the day.
And that’s Arlo’s story so far ?.
Fundraising for
Helping a Friend in Need (HAFIN)
Helping A Friend in Need (HAFIN) ABN 86611164197 disburses tax deductible donations to individuals and families for the direct relief of poverty, sickness, suffering, distress, misfortune, disability, destitution or helplessness. Donations are tax deductible and are disbursed directly to the beneficiary.
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