Ryan's story

Ryan was diagnosed with Stage 4 High Risk Neuroblastoma N-MYC amplified in July 2008. He was out of treatment for just over a year when in November 2010 our lives were again turned upside down when we discovered the disease had returned in his bones and bone marrow. After a year of treatment re-staging scans in November 2011 showed that he had again achieved remission.

However just 3 months later, in February 2012, end of treatment scans gave us the devastating news that the disease has returned, this time with a tumour near his spine. In March Ryan started 4 weeks of radiotherapy followed by chemotherapy which is on-going. Re-staging scans in May and August showed no evidence of disease. On the 4th September 2012 Ryan received treatment in Tubingen for a haplo-identical stem cell transplant. He is a happy, active boy who is now enjoying life to the full.

Tuesday, 11 August 2015

It's been a while since I have written an update and it's great to report that 'no news is good news'.  Life has been busy with normal things, I love normal mundane life, it's so easily taken for granted but it is the best.  We had a slight hiccup in June in that Ryan was recalled for an ultrasound of the neck following a routine tumour board review of his scan from May but thankfully this did not reveal anything abnormal although did put us in a spin until the results were known.  

Also in June my lovely sister Jackie got married and it was so good to get together with all the family, it doesn't happen very often and it was great to get together and for everyone to see Ryan looking well.  Ryan had the best time at the wedding, he was so looking forward to the evening disco as Jackie had given him the important job of starting the dancing to a song that he choose, The Macarena! He didn't stop dancing all night and thoroughly enjoyed himself.  

Throughout July Ryan got to be involved in all the usual school events for the first time, he went on school trips, to the summer fete, summer disco and sports day.  He still has a later than normal start but stays every day until the end of school and has even been attending a couple after school clubs: most recently ultimate frisbee and science.  July was also a significant month for me as I have a new job, I cant quite believe that I was lucky enough to get a job at Ryan's school, working in the office. Returning to work after so long was a bit of a shock to the system but it has been a positive step for me in many ways, especially being part of something other than the world that is cancer.  
At the start of the summer holidays we have had a visit from our good friends the Bird Family and Ryan really enjoyed spending time with Adam's sister and brother and even managed to talk Jessica into trying out Clip and Climb, despite her fears. It was lovely to catch up properly although unfortunately Gareth was ill with a fever and flu like illness and conjunctivitis, it was awful and put him in bed for a week - the first time I have ever known him ill.  Unfortunately as he improved Ryan caught the same illness and has been very poorly for the past ten days, although is now on the mend.  Hopefully by the end of this week he will be back to his usual self.  

We have planned a short break towards the end of August, Ryan's first taste of camping in sunny Cornwall.  Fingers and toes crossed for good weather!  And before we go back to school we will also be celebrating Ryan's 9th birthday - he hasnt actually decided what he wants to do yet and keeps changing his mind but we will make sure it is a very special day.  

Tuesday, 26 May 2015

Just wanted to do a quick update to let you know that Ryan's recent MIBG scan still shows no evidence of disease.  It has been 6 months since the previous scan, which is the longest we have been without a scan and so the wait for results this time was even more significant for me.  I am hoping that one day the waiting will get easier and although I can manage to keep the negative thoughts and 'what if's' at bay, they are still there lurking in the back on my mind.  To hear the news that the scan is clear still makes me emotional.

These scans are always in Bristol Children's Hospital and involve an over night stay and this time both the CLIC Sargent House's were full and so we had to find a hotel to stay in.  It made us realise how different things would have been for our family if the CLIC Home from Home's were not there, they really were a haven for us.  We try and make the trip to Bristol as enjoyable as we can once the cannula and radioactive isotope injection have been done and so this time we went to the cinema to watch Avengers - Age of Ultron.  Because it was the middle of the afternoon we had the whole cinema to ourselves which was perfect.  Ryan was able to return to school as couple days later once the radioactive drug had left his body.

He is feeling well and enjoying being a typical boy.  It is hard to get a photo of him these days as apart from when he is on his x-box he is never sitting still.

Yesterday we went on a leisurely bike ride with friends and when we sat down for well earned light refreshments all the boys wanted to do was skid on the grass on their bikes despite having already cycled miles!!

Wednesday, 11 March 2015

Its almost been another 3 months and so I thought an update was overdue but the fact that there hasn't been one is a good sign and these days tends to mean there is not too much to say.

Ryan has been going to school everyday, albeit with a later start and occasionally finishing early as he still gets tired concentrating for long periods of time.  Over the winter months he seemed to have a constant cold and/or cough but with the exception of the week before last hasn't needed time off school.  He did recently get a really high temperature and after 4 days of it getting worse not better I took him in to see his consultant, who confirmed he had both a chest and ear infection.  He needed a course of antibiotics so he was understandably wiped out for a week but is now back to his usual self.  Ryan had been telling me he was 'fine', 'stop stressing mum' and that he was 'just hot'!  This has got to have been the first 'proper' illness he has had since starting school, which is a great sign of his new immune system coping with the germs it is encountering daily.

Ryan continues to enjoy school and later this month takes part in his first school play, he has a part as a narrator and is really looking forward to it.  This month he also took part in his first World Book Day and really looked the part of Harry Potter.  He has decided he wants to have his hair longer and announced the other day that he thought he finally looked like 'a normal boy', bless him.

Ryan as Harry Potter for World Book Day

However the day coincided with a scheduled hospital appointment for a venesection (blood draw to reduce his iron overload) and so he didnt actually arrive at school until 2.30, but at least he got to school and of course the hospital staff got to see him in his great outfit.  This time he had 170ml of blood taken and so for the next couple weeks he will be feeling a bit tired.  He had had the same hospital appointment 2 weeks earlier but unfortunately the cannula wouldn't work and he was too upset to have it re-sited in his other arm and so it was delayed.

15 of the 17 syringes of Ryan's blood
He only has to go to hospital every 12 weeks now and although it is for an unpleasant procedure he still looks forward to going and seeing all the doctors and nurses that have been part of his life for so many years.  He has also had his lung function fully investigated and although it is impaired it seems to be stable and so he is being weened off the steroid inhaler and asthma drugs that he has been on since his transplant.  We will have regular lung function tests over the next few months to make sure that his lung function remains stable.

Other than that his next hospital visit will be for an MIBG scan, which will take place at Bristol Children's Hospital, and should be around May time.  Ryan doesn't like these scans as they involve a cannula for the injection of a radioactive dye but after discussions with the doctors we unfortunately feel that currently this is the best scan to detect any signs of cancer.  Ryan accepts this in his usual way saying ' well dont forget I'm going to need a good present!'

Entry from 24th December 2014

Somehow I forgot to put on entry on the blog at Christmas time and only did it on our facebook page.  It seems a bit late now but I thought I would add it anyway

Ryan is really looking forward to Christmas this year, he has had a video message from Father Christmas telling him he is on the good list and so he feeling confident about getting some of the presents from his list! He has enjoyed the build up to christmas at school and this year I was able to watch him at his first ever carol service, it brought tears to my eyes watching him dancing in his seat doing his best to sing along despite not really knowing any of the words!
We have everything we need for Christmas this year, Ryan at home feeling well, and we know that his Christmas is going to be a happy one. If only Christmas wishes came true we would wish the same for all our friends and family and everyone following Ryan's page but they simply don't. As always our thoughts are also with those whose loved ones are not with them and those who are still fighting and wont be at home for Christmas. Here is to a happy, healthy New Year......