Ryans Story

Ryan was diagnosed on the 7th December 2003 with rhabdomyosarcoma a rare form of cancer in his pelvic area; we were rushed to Crumlin Children’s Hospital where we were told that Ryan was in stage four of the disease and that it had spread to his lungs and bones. Ryan had to have a chest drain inserted to try and clear the fluid from his lungs he was seriously ill and the prognosis was very poor.

A line was inserted in his chest to start chemotherapy it had only been inserted a few hours when he picked up a fungal infection his oxygen levels were dropping and his blood pressure was rising rapidly the doctors said he wouldn’t make it through the night but he did he was only 2 years of age at the time. He went through 18 months of chemotherapy and radiotherapy and he was on a feeding tube all that time.

Ryan was constantly getting his blood checked I always remember when Ryan was about three an half and the doctor wanted to put some spray on his hand to freeze his hand to numb the pain from the needle when Ryan turned to me and said dad I don’t want any spray dad that’s only for babies can you imagine a three year old saying that it always sticks in my mind it was just the type of character that Ryan was.

ryanandhisbrotherspicture600For the next 6 months Ryan was doing well but his appetite started to fade again we went to Crumlin Hospital for our routine check up, they did an echogram and several other test.

They told us that Ryan had cardiomyopathy which was heart disease and that it had been caused by the chemotherapy and that he was going into heart failure and that he only had 30 % function in his kidneys all caused by the treatment he had been given to cure his cancer. Within 48 hours his heart function started to deteriorate the doctors started him on a course of medication they told us if the medication didn’t work within the next few days he would go into heart failure. We couldn’t believe it here is our son Ryan 4 years of age not only is he in remission from cancer but now he also has heart and kidney disease caused by the treatment which had saved his life initially.

The doctors spoke about sending us to Great Ormond St for a heart transplant but we knew Ryan wouldn’t make the criteria, first of all he would have to have been in remission from cancer for at least 5 years and also the fact that he had only 30 % function in his kidneys we knew that a transplant was not going to be an option. After nearly 2 weeks the heart medication started to take effect and Ryan’s heart function started to stabilise.

He was now on a lot of medication and he was back on the feeding tube, quiet amazingly he was a page boy at his god mothers wedding three weeks later joking and smiling. He was now 4 ½ years old on a lot of medication and being feed through a tube. The doctors told us that as his body grew it would put more pressure on his heart and his kidneys so we always knew the slightest infection flu or cold could be fatal the doctors taught that Ryan could do well up until his teenage years .

Ryan started in St Anthony’s school in September 2007 and he was doing really well, we started to relax a little bit more as his heart function was stable and the type of tumour he had was not known to come back after a certain period of time which had passed and the doctors were happy with his progress, but then in February 2008 Ryan had some swelling in his pelvic area we brought him to the mercy hospital they did an MRI scan I knew as we walked in for the scan what the outcome was going to be that the cancer was back.

We were sent to Crumlin Hospital to verify all the tests, Ryan’s type of tumour which was a very aggressive tumour if it does reoccur it usually happens within the 1st year and half post treatment because it is so aggressive with Ryan it had reoccurred after 3 years post treatment according to his oncologist it was only the 2 nd case that they had come across that this type of tumour had come back after such a long period the only other case that had occurred had been in Canada, again we were thinking why is everything going against our little boy, heart disease kidney disease and now this, all the medical history indicated after a 3 year period he should have been in the clear but alas not with our little boy.

We knew because of his heart disease & kidney problems that his body would not be able to take any more chemotherapy, his oncologist Dr O`Meara who is an excellent doctor explained to us that treatment wouldn’t be an option. We believe if he hadn’t had the cardiomyopathy ie heart disease he would have beaten the cancer again this time, but because of his heart disease it wasn’t humanely possible.

We brought Ryan home and he died 4 weeks later on the 8th March 2008. Never in my life time have I ever met anybody quiet like Ryan or will I ever meet his like again he was a total inspiration to us and it was such an honour to have him as a son even if it was for such a short period of time, after you lose child you will never get over it but there is no point being bitter as it will only eat you away.

I always remember the 1st time in St John’s Ward in Crumlin Hospital talking to a lady who’s child was dying from a brain tumour and she was explaining to me how grateful she was that she had got an extra 3 years with her child as he should have died 3 years previously at the time I just couldn’t understand how the lady could think that way as her child was dying, but unfortunately today we know exactly what she meant.

We were one of the 1st families to stay in the Ronald MacDonald house in Crumlin Hospital and Ryan loved staying there, the staff and facilities are excellent so therefore it is our chosen charity and we will always keep Ryan’s memory alive by holding charity events in his name for the Ronald MacDonald house Crumlin hospital.