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, 24 December 2013
Tuesday, 10 December 2013
|Gareth, Ryan and I meet Miles Leeson, Beccy Shields and Luke Tillen at Peak Performance Gym in Torquay|
There is a bit of a story behind this amazingly generous gift: Miles ran a 12 week challenge at his gym with a chance for the winner to take a trip to LA to train in Gold's Gym. Unfortunately the winner, Beccy Shields, was unable to take the holiday and so Luke suggested to Beccy that they change the holiday to Euro-disney and offer it to a family through Luke Tillen's charity Torbay Holiday Helpers Network. The charity then got in touch with the CLIC Sargent team at the Royal Devon and Exeter hospital and Ryan's name was put forward....
We found out that our family had been chosen for this wonderful holiday about 6 weeks ago but managed to keep it secret from Ryan, just in case something happened and we couldnt go. We have been having secret phone conversations with Miles and Luke over the past few weeks but yesterday Miles got to tell Ryan that he was going to Euro-disney this Friday!
For once Ryan was lost for words - he said Thank You lots of times but you could tell it hadnt really sunk in, he has heard his friends talk about disneyland and has asked before if he could go one day but there had never really been the opportunity. Miles showed Ryan lots of photo's of Euro-disney on the website and when he was asked what he was looking forward to the most his reply was 'All of it!'
In the car on the way home I asked Ryan how excited he was as he was a bit quiet and he said he was afraid to get too excited as 'things dont always work out as planned'. Dear little man has been so just to disappointment but I reassured him that he could get wildly excited as this was definitely going to happen! (And I promise to post some photo's while we are there!)
And now we are counting down the sleeps! 3 sleeps to go!! Huge thanks to Miles, Beccy and Luke for making our Christmas magical and Ryan's his best EVER!! We really can't thank you enough xx
Saturday, 7 December 2013
Monday, 25 November 2013
All in all we are experiencing the longest period of normality that we have had in a very long time, which is both wonderful and weird at the same time. Ryan is enjoying his sessions in school and as of this week he will go into school for 2 hours on a Tuesday and Wednesday morning. He is joined by a small group of children from his class and really enjoys the sessions. We have also incorporated the break time into his time at school although he is finding this a lot harder. He is not used to being in the company of so many children, who are running around burning off some excess energy. To him the running and chasing is frightening, as he is worried that if he joins in someone may grab his t-shirt and pull his central line. And so he mostly observes what the other children are doing until a time that he feels happy to get more involved, but small steps in the right direction.
It hasn't helped that he doesnt really know anyone in his year and so when a couple of the boys asked Ryan is he was coming 'football after school' we found out about the after school football club and joined. When I started this blog I said that playing in a football team is something that Ryan has always wanted to do - and he has always wanted to play on the school football field that we pass whenever we leave our house. I felt very emotional seeing this become a reality, seeing his excitement running around the pitch, seeing him push himself to keep up with the others and managing to join in for the whole hour long session, he has even scored a goal! He still amazes Gareth and I, and his consultants too!
It is hard to imagine that this week it is a year ago that, thanks to Make A Wish, we took him to meet his hero Travis Pastrana in Dusseldorf. He now has the framed signed poster proudly on his bedroom wall. Such a lot has happened since then and we feel very lucky to be where we are today. This is the first Christmas in many years that we can actually look forward to, Ryan has spent the majority of Christmas' in hospital. And so this year, thanks to the generosity of 2 wonderful local charities, we are making plans to give Ryan a Christmas to remember, we are keeping the plans secret from Ryan until nearer the time but will be sure to share photo's.
Finally, and on a separate note, the charity that have supported us and that we fundraise with, The NCCA UK, has a national event starting in Exeter with Ryan. Please come along and show your support to the NCCA UK's Cycling Santa's who start their 800 mile cycling challenge by delivering Christmas presents to children fundraising with the charity, starting with Ryan at the Toby Inn, Middlemoor, Exeter on Sunday the 1st December. The Santa's will be meeting Ryan between 9.30-10 am and we would love as many as possible to come along and see them off and if you needed another reason to get out of bed early on a winter's morning then how about a Toby 'all you can eat' cooked breakfast? Hope to see you there......
Friday, 25 October 2013
Monday, 30 September 2013
Ryan had another venesection on the 12th September and blood tests show that his iron overload is starting to reduce. Although his inflammation marker (ferratin) is still massively elevated it is a great sign that it has started to reduce after just 3 venesections.
And then the set back; I noticed over the weekend following my last update that Ryan seemed to be getting out of breath on his scooter and running around. When he was in hospital for his GA the following monday for the bone marrow tests he was given a thorough examination and although his lungs sounded clear, his lung function had reduced compared to his previous reading. He had no fever to speak of, although was a little warmer than usual and was off his food a bit too. It was suspected that he had picked up a virus and that hopefully he would improve in a week or so.
Over the next week his symptoms seems to get a little worse in that even going up the stairs at home caused him to become out of breath and sit down to recover his breathing. I also noticed that his rate of breathing in the night was much faster than usual but still no fever etc. By last Monday I was feeling really worried and asked to take him in for another examination. His consultant decided to send him for an x-ray and agreed that he was puffing quite hard even at rest. He still didn't have a fever to speak of and as long as he didnt do more than sit on the sofa or walk around he seemed ok and was in good spirits.
Ryan's consultant gave it some thought and decided that it was most likely that Ryan had developed a form of pneumonia caused by a parasite, which can be common in transplant patients. He immediately started him a high dose of anti-biotic and thought that he would need between 14-21 days of treatment depending on how he responded. He has now been on the anti-biotics for a week and in the past couple days does seem to be starting to become less breathless which is great to see.
This set back has meant that Ryan didnt get to attend his first hour session at school but we are really hoping that can be re-arranged in the near future.
Friday, 13 September 2013
Saturday, 17 August 2013
|Ryan clearly isn't afraid of heights!|
|In action on the zip wire|
Wednesday, 17 July 2013
Our trip to Tübingen went according to plan with no surprises; we didn't wait for the results of t-cell analysis or virology before heading back for home but the night before we left we were lucky enough to have timed it right so that it was the 'Thursday Parents Meal' but this time the meal was prepared by a turkish family, whose daughter had recently had a haplo identical stem cell transplant. They prepared a feast of wonderful food and invited the doctors and nurses from the transplant unit. Ryan stayed up late so that he could try some of the food and was pleased to see his favourite male nurse Luca again. The following day we managed to squeeze the rest of our belongings, including 2 toboggans, into the car and headed home.
Last week Ryan had a full body MRI, as it had been over 3 months since the last one. Again he was amazing and lied still, covered in strapping and a head brace, for almost an hour. We are awaiting the results.
He was very upset in the days after his friend Adam died. We have spent lots of time talking about things with him and answering his questions; we are very lucky that he is so good at communicating his feelings and expressing himself. Gareth and I usually have to wear a mask to hide our own feelings and so it has helped us greatly too being able to talk about things.
Friday, 12 July 2013
We are very sad to tell you that yesterday Ryan's best friend Adam Bird passed away peacefully at home with his parents Nick and Alison holding his hands.
We respect them both so much for always being able to make the right decisions for Adam and cannot begin to imagine how much the whole family will miss him. Our thoughts and prayers are with Nick and Alison and his big brother and sister Jake and Jessica x x x x
Wednesday, 3 July 2013
Tuesday, 25 June 2013
Saturday, 8 June 2013
Friday, 31 May 2013
Sunday, 26 May 2013
On Wednesday i updated our facebook page with the following update: (don't get too excited as the news changed on Friday).
Last week we didn't get any t-cell results but were shocked to learn that adenovirus had showed up again in Ryan's blood. They repeated the test on Friday and it felt like a long wait until Tuesday when we learned the test was negative again. The virus is obviously trying to rear its head but the t-cells are keeping it at bay at present. We were also told that the virus was no longer detectable in the stool which is the first time in months.
But the best news was that all t-cells are now 100% donor, no autologus t-cells exist. Now we just want this weeks blood, stool and t-cell test results to show the same great results!
In himself Ryan is feeling ok, he still gets tired easily but there is still so much going on in his body. But at the weekend we took him to a theme park for a few hours and he had a great time on the rides, and is still a bit of a speed demon! It was a great feeling to see him having some fun.
That was the update i was going to put on here too but then on Friday we got the results from Tuesday's blood and t-cell analysis:
'The adenovirus is negative and autologus t-cells are 9%....' 'Sorry did you say 9% - last week it was 100% donor?.......'
Apparently, on closer inspection, errors were found in the results and the analysis had 'failed' or so they think. It is a sensitive test and we knew it could sometimes 'fail' but still. And so 9% is an improvement on the result of 11% 2 weeks ago so we have to be thankful for that.
As Ryan's GvHD symptoms are under control the immune suppression has been reduced again and so we simply have to wait until the end of next week for the next results. I forgot to state in the last update that the virus HHV-6 remains in the leukocytes but not in the blood plasma.
We have had some hospital free days but the weather has changed so we haven't been up to much. Tomorrow though we hope to meet up with friends who our touring the area on their motorbikes, weather permitting. Not posted a photo for a while so here is a recent one:
Monday, 13 May 2013
Saturday, 4 May 2013
Thursday, 25 April 2013
Friday, 12 April 2013
Thursday, 4 April 2013
Friday, 29 March 2013
Tuesday, 19 March 2013
Here is a photo of the tablets he is taking each day - in addition to this there are 8 syringes of medicine and a steroid mouthwash…..