A very different year

Christmas time is always a time when I reflect on the past and feel so grateful for what we have, knowing that things could have been so very different.  It is always possible to find a positive, sometimes it just means looking a little harder.

The past year has been different, but for everyone, some have been more affected than others, some have lost loved ones, many have lost jobs and everyone has had to make changes to their everyday life. 

We were really fortunate to take Ryan away skiing in February, he and his Dad are mad about skiing, they are out early and home on the last lift, Ryan is already a fantastic skier and looks forward to this holiday very much.

By March Ryan was classed as extremely clinically vulnerable and so received the letter telling him he could not leave the house, he was not impressed but within a week his school closed to his year group and he was not the only one learning at home.  

Ryan's treatment meant that he missed out on years of school, he only reached 50% attendance in Year 4 but despite this, he has managed to maintain his education to a level that equals his piers.  He still talks about a job linked to treating others - like a paramedic, sports physio, mountain rescue paramedic and most recently giving inspirational talks!

'Shielding' took me back to the days when Ryan had no immune system and any infection, no matter how innocent, could have had devasting results for him.  Again we had to restrict his movements, and stop him living a 'normal' life.  Handwashing and alcohol gel was a big part of life back then too and the habit has never really gone away.  This time though, Ryan wasn't battling cancer, this time he was well and we had that to be thankful for.  

He struggled a bit when friends were allowed to meet outside and he couldn't but again technology proved to be a lifeline and kept him in touch with his friends.  We tried to keep him entertained at home and, with the help of Mark, made him a table tennis table for the garden which became a regular feature of the day!

We are lucky to live close to the beach, and as soon as we were able to do so, we took him out on the water again on his Dad's beloved jetski and the months at home seemed like a long time ago.  

 

He also still loves his motorbike and is always looking for new skills to learn, and to make my hair a little greyer!

We even managed a weekend away with friends to celebrate his 14th birthday...

Ryan is a healthy, and sometimes typical, teenager! He is now growing well (with the help of the daily growth hormone injection). 

  

It can be hard to feel excited about Christmas when we cant celebrate with friends and family as we have in recent years, but there have been worse Christmas times and there will be better ones to come.  This Christmas we feel for the doctors and nurses and all the hospital staff who have worked tirelessly this whole year, the families still undergoing treatment and those whose hospital treatment has been delayed and families that can't be together - knowing that for some this will always be the case.

We hope that your Christmas is a happy one where ever you spend it and hope for a healthy 2021.

They say 'A picture is worth a thousand words'...

Zorb football for Ryan's 10th Birthday in Sept 2016

This year I thought I would show you what Ryan has been up to since my last update and hope that you can see for yourself how truly lucky we feel...

Taking part in the firewalk in memory of Harvey Hext, to raise money for
The Harvey Hext Trust- A siblings wish

Halloween and Christmas Day 2016   

Ski holiday in February 2016

 After the operation to create a new tear duct - March 2017

   Taking after Dad on his motorbike

  School disco summer term 2017

Family holiday with cousins Summer 2017

   Trampoline park with Spencer Hext Summer 2017

  

Jet-ski fun with friends Summer 2017

Halloween 2017!

Helping decorate the tree...

Ryan is now 11 and in Year 6, he continues to do well at school and it's hard to believe that next September he will be joining secondary school.  The months are flying by.  He is well and he has fewer and fewer hospital visits.  His growth has been effected by the vast amount of treatment he has had and so he had recently started on a the growth hormone, which should help him achieve a normal growth pattern.  Unfortunately this comes in the form of an injection each evening, just before bedtime, but he is coping well and we hope that this will soon become part of a new daily routine.

We would like to wish everyone who follows Ryan's story a very Happy Christmas and a happy and healthy 2018 xx

It's been a while

I am no longer in the routine of updating the blog, but this can only be a good thing.  It has always been an emotional thing to do, something that I need to be in the right frame of mind for but recently, after seeing several stories of children with relapsed neuroblastoma, still being told that there is no hope, no options, still being asked if they wanted to simply take their child home and make the most of them, I have felt the need to do an update, just in case Ryan's story can give someone else hope.

It's been nearly a year so where to start, firstly Ryan continues to be well, so to pick up from where we left off he decided on a kayaking party for his 9th Birthday party - he invited lots of friends and had a great time.  He went back to school on the first day of the new school year, which is a first I think.  His tutor had been gradually reducing her time with Ryan over last summer and by October half term she withdrew completely as Ryan has achieved over 50% attendance and therefore no longer met the criteria for her support.  Her support had been crucial to Ryan but he understood that her work with him was done and that she needed to support other children.

Year 4 saw Ryan increasing his hours to stay to the end of the school day, he joined after school clubs Fencing, Sports Skills and Green Team, he had weekly swimming lessons with his class mates, he excelled in his learning and is now confidently holds his place amongst his peers, even being joint first in his class in a recent reading test.

In the Easter school holidays we took Ryan away skiing with our good friends, the Bird Family who joined us for their first ever skiing holiday and Ryan's cousins also joined us.  Only one person could have made the holiday even more special, what we would have given for Adam to be there with us, but he was with us in our hearts.

In May Ryan went away on his first residential school trip, sleeping in a Yurt for 2 nights!  He was very apprehensive about it (and so was I!) but despite his anxiety about being away from home he went, and took part in the whole experience with all his friends.  He felt very pleased with himself and really enjoyed it, his favourite part being making homemade pizza with veggies that they picked from the vegetable garden.

The enormity of what Ryan has achieved academically is reflected in his wonderful end of year school report, which reads just like he has never missed a day of school.  To say we are proud of him is an understatement.

Earlier this month we were invited to Chessington World of Adventure, with the charity Hugs for Henry (founded by the family of another child who has had Neuroblastoma).  The charity invited lots of children who have either had treatment or were having treatment for cancer and Ryan had a lovely day going on all the rides.

Medically Ryan see's his oncology consultants every couple of months, he has suffered with reoccurring eye infections after contracting adenovirus in his eye last summer.  This has lead to a diagnosis that he, in fact, has a blocked tear duct and will unfortunately need an operation to construct a new one.  The operation does not sound very nice at all but is the only way to deal with this problem, and to cure the eye infections.  We have delayed the operation until end of September/early October as Ryan wants to enjoy the summer with his friends after missing out on so much last summer when his eye first became infected.

He still has an iron overload and so continues to have venesections every couple of months to reduce the iron in his body - this week he had 100ml of blood taken and managed to cope with the cannula with no tears for the first time in months.  He also has regular lung function tests to monitor function, as his lungs are impaired due to all his treatment - not that this seems to effect him on a day to day basis and still meant that he thoroughly enjoyed the 4 races he took part in on Sports Day!  His MIBG scan last May turned out to be the last scan that he will have routinely.  The decision was made with our agreement, and although not an easy decision to make, we have to accept that we cannot continue to scan indefinitely and so another milestone was reached.

Today Ryan broke up from school and we are now looking forward to the summer holidays and to a family holiday in Menorca, the same resort that we went to 2 years ago.  And then before returning to school, it's time to plan Ryan's 10th Birthday - apparently this year Zorb football is on the list of maybe's...

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.  

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!!

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......