Janine’s Story
Janine and her much loved son Ryan
Ryan was only 22 when he was diagnosed with stage 3 bowel cancer in March 2020. For nearly a year he had numerous appointments, bloods and stool samples. He asked if he could have bowel cancer and was given the “you are far too young for bowel cancer” line.
Hospitals weren’t foreign to Ryan as he’d spent all his life in and out of hospital. Ryan was born with a syndrome called Fanconi Anemia, in most cases they will require a bone marrow transplant, Ryan required two bone marrow transplants due to the first not working. Along with the syndrome and having treatment they are 700 more times likely to get cancers. We were always vigilant but it still snuck through and created a very hard journey.
As we entered our first COVID lockdown Ryan had his bowel surgery, this he had to do alone. I had to drop him at the front door – one of the hardest things I have done as I have always been by his side from the day he was born… every appointment, every operation, every hospital stay. Ryan has never had an easy journey, there’s always been hiccups and issues but he dealt with them like a trooper. I have no idea how he mustered up the strength to carry on each day.
With all Ryan’s treatments over the years his veins were shot, so the talk of having a port put in did not go well. He did not like anything foreign in his body but with his veins shot and the picc line insertion not working he went ahead. After eight months of gruelling chemo, sickness, terrible mouth ulcers and several stays in hospital he was done and things were looking up.
One year and 5 days after being told he had bowel cancer we learned it had metastasized to his liver. Of course, the lesions were on both sides, so the decision was to do ablation/chemo and then surgery – but his body was not coping with the chemo so the decision was to stop and go to surgery.
While in surgery we went into the second lockdown and everyone was told to leave. Ryan had been in surgery for over 6 hours and they wanted us to go, I had to fight hard to stay and see him when he came up to ICU. The sight that greeted us was unreal but he was a fighter and blew the doctors away by getting up on his feet the next day.
I was always searching and finding things that may help Ryan, and with the chemo not working I decided to see if we could try private care as I had filed an ACC claim and if accepted, we might be able to try an unfunded drug. This was accepted and treatment for that started. This too had its complications but he would try anything to stop the beast. Nine months ago, the worst mouth ulcers I have ever seen started – even drinking became an issue.
Six months ago, Ryan was admitted into hospital with an obstruction to the liver and needed a stent, never for one moment did we think he wouldn’t come home, he always came home. Ryan had his stent surgery and all went well, the next day he coded and we were told he may not make the night, this left us all shocked. The family was called in and we stayed with him 24 hrs a day, he was fighting hard to stay. He fought for four days, but on the 3rd July 2022 he decided he was tired and his fight was over – at 1:04 pm my beautiful boy passed away with his family by his side.
This has left a huge hole in our hearts. Ryan was so ambitious he wanted to be rich and have his own clothing brand. He had designed a logo, it’s called “Better Days Collective” (BDC) – we have gone ahead and had this made up how he wanted it, and hopefully will get some shirts out.
My daughter had a memory bear made for us, “Ryan bear”. It’s dressed just like him in his huffer shirt, his bucket hat with the BDC logo, his glasses, and his necklace with the ring on it. But the best thing is his voice, press his feet and we can hear his voice and laugh.
Cancer has no discrimination or boundaries, the “you are too young” line needs to go! Perhaps we may have had a better outcome.