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......

Life is continuing to feel more normal, and slowly we are allowing ourselves to make plans more than a week or so ahead which is something we haven't felt able to do for a long time.  It is still hard to accept normality unreservedly especially when other families that we are close to receive bad new about relapse or post treatment complications.  My thoughts are always partly with others.

Since the last update we have had a few hospital visits; Ryan developed a rash which spread all over his front, back and down his arms and legs.  He felt well but it reminded us immediately of when his GvHD started and so we took him into be checked over.  His consultant reassured us that she didnt think it was anything sinister and gave him some anti-bacterial lotion, thinking it could have been caused by a low grade infection picked up from swimming or something similar and after a week it had disappeared.  He had an Audiology appointment to ensure that his hearing had not deteriorated further, as he has some high frequency hearing loss due to treatment.  He did make the lady laugh as when she asked him if he knew why he was there he informed her that he did but that it was a total waste of time as he can hear fine "even when my mum is whispering stuff she doesn't want me to hear!"  And he was right as the results were unchanged which was reassuring.  He had a full body MRI scan and urine catecholamines to check for any evidence of disease and both were completely clear.  His next scan being an MIBG scan which is being arranged for sometime in November.  He has now had an appointment come through with the respiratory consultant but that is not until the end of November.  He also had a review with his lead consultant from Bristol Children's Hospital who was delighted to see Ryan looking and feeling so well.

Since we returned from Germany we had wanted to meet up with the other families that we met out there from the UK and so in August we managed to see Jamie Inglis family from York.  Ryan and Jamie's sister Poppy hit it off instantly and seemed to have a special friendship despite never having met before which was really lovely to see.  And in September we met up with Vanessa Riddle and her family, who live in Scotland, and again it was like we had only seen them yesterday.  The bond that you make with other oncology families is one that is life long.

Ryan is now 8, (going on 18) he had a fantastic birthday party and this year for the first time he invited some of his new school friends to his football party and had a great time.

This year Ryan went to school on the first day of the new school year for the first time ever.  He is now in Year 3 and has been made so welcome by the children at his school.  The staff at the school and his tutor have done everything possible to make his integration into school a positive enjoyable experience and so he genuinely enjoys going to school.  He has joined the after school football club again and has swimming lessons and has never been more active.  He goes to school every day although starts a little later than others.  On 3 days he stays until 1.30 and 2 days until the end of the day.  He does find school tiring, but his time in school is steadily increasing as his stamina builds.  He is eating well and has regained most of the weight that he lost in the summer.

We are so very grateful to see Ryan enjoying life to the full.  On the way to school this week the sun was shining and the birds were tweeting from the trees and he said to me "I really love this world that we live in mum".  And then I realise that it is not just Gareth and I that will never take things for granted again but Ryan too.

Normality

I cant believe its been 3 months since I wrote an update! I guess it’s because there is less to say which can only be a good thing.  Things have been pretty ‘normal’ here, although I struggle to know what normal is after the life we have led the past few years.  Some days for me normal can be a challenge.  I struggle to plan simple tasks like food shopping, what’s for tea, remembering birthday’s, remembering anything really! I am still very preoccupied with Ryan and have to focus on not worrying about what the future holds, ordering your thoughts can be exhausting!

For Gareth normality is being back at work, he had no choice but to slot back into work last year when we got back from Germany. But for Ryan and I ‘normal’ has been slowly evolving over the past 6-12 months.  Like most oncology parents I lost my job recently as I have been unable to work whilst looking after Ryan, but I wouldn’t have had it any other way, I still feel that every moment with Ryan is precious.

Ready for the school disco!

For Ryan normal has been becoming part of his class at school finally, and he has really enjoyed it!  He skips to school and then chats about what he has done all the way home.  He has still not attended a whole day but is gradually increasing his time in school.  

He has been in almost every day since a few weeks after the Easter holidays and some days attended in the morning and afternoon but has not wanted to stay at lunch times yet.  But even so he has made huge progress and we all feel very proud of what he has achieved.  

He has attended his first ever school disco (and had a great time) and his first ever Sports Day – very emotional for me and something that Ryan had been very much looking forward to.  

Sports Day - the big smile says it all!

He has been having swimming lessons, enjoying playing football with his friends in the park and overall seems to have a new found energy compared to last year although it's going to be a while before he can keep up with his friends.  We are very much enjoying doing normal family things and spending time together away from a hospital environment.

Medically things are good too overall; the MIBG scan that we had in May showed no evidence of disease, which for me was a huge relief as Ryan sometimes complains of a pain here or there or stomach ache and a little seed gets planted in the back of your mind that only goes away when you get such results. 

His hydrocortisone was reduced to a minimum dose as opposed to the generous dose he needed when he was not so well last year; a synacthen test was done in hospital to see if the medication was still needed or if Ryan’s adrenal glands were producing sufficient cortisone.  He failed the test, producing almost none of his own but there is still hope that in time his adrenal glands will recover and this medication can be stopped.  Reducing this medication, which is a form of steroid, had the effect of reducing his appetite, so with his increased activity levels this has meant that he has lost weight! Not ideal but again something that will hopefully rectify itself in time.

He still gets breathless on occasion and as his lung function test shows a restricted lung function we are awaiting referral to a respiratory consultant to see if they can give a clearer picture as to what the problem might be.  But after all the chemotherapy and radiotherapy Ryan has had it would be amazing if he didn’t have a few problems, we are just lucky that they are not currently having a big impact on his life. 

He has been attending hospital every 6 weeks for an IV infusion of immunoglobulin, which was the final missing part of his immune system but blood tests now show that his body is now producing this and so no more infusions are needed.  He was also having a venesection (blood draw) every 6 weeks but he was becoming noticeably tired for weeks afterwards and so we are now waiting 12 weeks in between so although he still gets tired for a couple weeks he should feel well for longer periods in between. We also had the fantastic news that his chimerism is now complete, this means that there is no trace of any cells, in particular t-cells, originating from Ryan’s old immune system.

His next hospital visit is for a full body MRI scan to check that there remains no evidence of disease, at present we are having scans every three months and they just never seem to get any easier!   

   

Another update seems over due so I will try and update you on the happenings of the last 6 weeks:

On the 17th March Ryan had a day in hospital for venesection, immunoglobulin and bone marrow aspirates and trephines.  It was a rubbish day for Ryan, but as usual the hospital team let him make decisions as to how he wanted things to happen and so Ryan opted for a cannula in hand for the IV administration of the general anaesthetic and infusion (he hates the mask induction) and he knew that when he woke up he would also have a larger cannula in his arm for the venesection (as previous attempts to take sufficient blood from a cannula in his hand had failed miserably) and would have a plaster on his back covering the place where bone marrow had been taken.

Just come round and already eating!

He was very brave, he did have lots of tears, when the first cannula when in and because the cannula in his arm needed a lot of fiddling with to get to work, which was very painful but eventually it worked and 160ml of Ryan's blood was taken to try and reduce his iron overload and afterwards Ryan told his consultant that he 'was the best doctor, ever!' The cannula in his arm was then removed and Ryan had a 3 hour infusion of immunoglobulin in the cannula in his hand.

The blood taken was used for a multitude of tests and we had some really good results.  His iron overload is continuing to reduce, his immune system has finally recovered to the extent that most of his t-cells are within the normal range, albeit at the bottom of the range but still big progress.  This meant that we were able to stop his anti-viral medicine that he had 3 times a day which is fantastic.

After a week we also got the good news that his bone marrow samples were completely clear of disease, no cancerous cells were detected.  The relief you feel when you get these results is hard to explain, its almost like you have been holding your breath without knowing and you can take a big deep breath again.

Ryan has been attending school on a tuesday, wednesday and thursday with his tutor and has continued to work with a small group of children from his class.  He goes into school for 2 hours each time and we are hoping to slowly increase this and finally integrate him into his class now that his immune system is recovering.  He will still be vulnerable to infection, a bit like a new born baby, but at least now he will have the means to fight infection.  And so next week will be the first time that Ryan joins his classmates. He is a feeling a bit nervous about this, he is much more used to the company of adults then children, but I know he will enjoy it.

He had a great half-term seeing lots of friends and enjoying the lovely weather.  It is still wonderful to just be at home and be able to enjoy the garden.  I get satisfaction from such simple things like hanging out the washing in my own garden and we finally have had time to sort out all the toys he has out grown - we took loads into the hospital for the playroom.

And before we knew it, 6 weeks had passed and it was time for another visit to hospital for venesection and immunoglobulin.  This time, Monday just gone, Ryan had the cannula placed in his arm while he was awake, again he did have lots of tears at the time it went in but soon recovered.

While his blood was being processed to see if he needed immunoglobulin (to support his recovering immune system) he had a favour to do for his consultant, who was teaching a group of medical students on the 'science of chemotherapy'.  Ryan was asked if he would come and talk to the students about chemotherapy from a child's point of view, his consultant said that Ryan was the most qualified person he knew to do this.  Ryan agreed and so with cannula in arm, we went to the medical school where a room full of about 30 medical students were waiting.  I'm not sure that they were expecting a 7 year old boy, but after being introduced by Ryan's consultant and hearing a brief summary of Ryan's extensive medical history, which is not easy listening for anyone, they were encouraged to ask questions about what chemotherapy is actually like.  Ryan was a bit nervous but with a bit of prompting from Gareth and I he explained about getting a sore mouth, feeling sick, being sick, food tasting like cardboard and loosing your hair, several times.  He also explained how he enjoyed playing the Wii with other children while they were also in hospital having chemotherapy because it helps you forget what medicine you are having.  Then we left the consultant to talk about the scientific bit and waited back at the ward.

The venesection went well, the cannula worked beautifully and another 160ml of blood was taken.  It turned out that Ryan needed immunoglobulin, his numbers are still not quite high enough, but unfortunately due to a delay at the lab it took hours to come and we didn't get home until 9pm.

And then later this week Ryan had an MIBG scan at Bristol Childrens Hospital, as they don't do this scan for children at Exeter hospital.  Unfortunately this meant a second cannula in a week as a radioactive dye is injected into Ryan.  The dye is absorbed by any cancerous cells and are then visible on a scan the following day.  Unfortunately the cannula wouldn't go in on the first attempt.  To say Ryan was distressed was an understatement, it really hurt and had to be removed and inserted into his other hand.  And then when the dye was being injected that really hurt too, which can sometimes happen if the the end of the cannula is resting on the inside of the vein apparently as it is 'an irritant' but as soon as it was done the cannula was removed.

Ryan and Ann at CLIC House

And so then we took Ryan to the cinema to try and make up for such a rubbish morning, the cinema was practically empty, just 10 people including us and Ryan really enjoyed it, his second trip to the cinema ever.

This time as Sam's House was full we stayed in CLIC House, another CLIC Sargent House near the Children's Hospital.  We haven't stayed at this house for years and Ryan didn't remember it really but some of the staff are still there and it was lovely to catch up with them and for them to see Ryan all grown up.  We came home yesterday after the scan and now await the results.  I hate waiting for results more than anything, it doesnt seem to ever get any easier but in the meantime we are enjoying 'normality' and hope that long may it last.

Another month has passed and what a month it has been!

The view from our apartment!

Our planning came into reality and we took Ryan to France skiing, to Les Arcs 2000, and it was wonderful.  The apartment we booked proved to be a lot smaller than the photo's suggested and so it was quite a squash with friends and family staying but I think having lived in one room for 9 months in Germany we were used to be organised and nobody complained.  The apartment was fairly close to the slopes but still meant a 10 minute walk in ski boots each morning.  Ryan found the altitude exhausting initially, but both his breathing and his stamina were much better by the end of the holiday.


We were lucky to also have friends staying in the village so we had lots of fun and Ryan loved spending time with everyone.  It wasn't always blue skies and sunshine, there was plenty of snowy days so all in all the conditions were great.

The resort was ideal for beginners but also had more challenging runs and lots of off-piste too.  It was possible to go to neighbouring resorts via chair lifts and Ryan skied the whole of the area!  He really liked the Freestyle Snowpark which has purpose built jumps and the Bordercross which was also purpose built like a racetrack in the snow, with banked turns, bumps and jumps!  Right up Ryan's street and he loved it.  Gareth is a great skier and Rya loved to try and copy his Dad and was soon spending more time off the side of the piste rather than on it!  We were really surprised by Ryan's strength and determination, within days he no longer needed the harness we had bought for him and was skiing by himself.  Im really not sure how I am going to keep up with him in years to come?!  We will upload some video to YouTube and post a link when we have done it.

              

And now the medical bit and its only a brief but significant update: Ryan's full body MRI in January was clear - he remains 'with no evidence of disease' and his autologus t-cells have now reduced to just 1% meaning that his body is no longer capable of overturning the transplant:  both of which which was wonderful to hear and a great start for our holiday....

Ryan's first cannula experience was 'ok'.  There were lots of tears when it was being inserted, it didnt work well enough to enable a venesection (blood draw) to be done but once it was in the tears stopped and Ryan coped well for the 4 hours that the infusion ran for.  Next time (the 17th March) he will need the cannula inserted into a larger vein in his arm so that blood can be taken to reduce his iron overload.  He is very apprehensive about this, understandably.  His consultants have decided that they will coincide the venesection with bone marrow aspirates and trephines so that he only has one trip into hospital so he is even less keen about this but will hopefully cope as well as he usually does.

Ryan getting some air on the jump at the Freestyle park

Time for an update

After a lovely December, Christmas was as special as we had hoped for Ryan.  This year we managed to see all our close family and friends as everyone was well and we had several get togethers which Ryan really enjoyed.  On Christmas Eve after sprinkling reindeer food on the lawn, and putting out carrots, mince pie, gingerbread man and milk for Father Christmas Ryan ran upstairs and came down with his autograph book that Karen had given him at Euro-Disney 'I bet no one else thinks to get Father Christmas's autograph!' he announced and left the open book and a pen beside the goodies!  On Christmas morning he ran down the stairs, shouting 'He's been AND he signed my autograph book!' His new prize possession.

During December we had been discussing with Ryan the need for his central line.  This line has been invaluable and was an access for IV medications, drugs and blood products for the past 3 and a quarter years and affectionately called his 'wigglies'.  In the last few months it has only been used once every 4 weeks but each week I flushed it at home with heparin to stop it blocking and also changed the plaster which secured it at the site it exited his chest.  Ryan still needs IV access every 4 weeks and so we made a list of Pro's and Con's : The only Con being the need for a cannula as Ryan is not great having needles but the list of Pro's was long: deep baths, showers, swimming, karate, freedom to play rough and tumble with his friends, being able to play without mum and dad watching like a hawk and for us not having an automatic admission to hospital for IV anti-biotics if he gets a fever over 38.0 degrees. And so on Tuesday the 7th January 2014 at 9.30 am Ryan went into theatre to have his line removed - a huge milestone for all of us.  The procedure was straightforward and took only a matter of minutes but as he needed a general anaesthetic it meant a morning in hospital.  The previous week the line had been used for the last time for the 4 weekly infusion of immunoglobulin, which he needs to support him while his immune system is very low, and for the blood draw to reduce his iron overload.  After a week, when the site had healed, he had his first long shower in years, he loved the feeling of the water running down his face and stood in there for ages giggling which was lovely to hear.  Next week is his first infusion via a cannula and we are hoping that he doesnt find this too traumatic.   He asked me to take these photo's to share with everyone:

Going, Going, Gone!

Ryan continues to attend school but still only 2 mornings a week for 2 hours each time, he arrives at break time but until this week he hasnt wanted to join in and play, just to observe, but now his line has gone he was off playing with his newly made friends and this is another huge milestone for him.  He then goes to a separate classroom with his tutor and 4 or 5 children from his class to reduce his risk of infection.  He is very much looking forward to joining the classroom and we keep hoping that his immune system will recover enough for this to happen, the numbers are slowly increasing but he is still way below normal and no one is able to tell us how long it is going to take to recover.    Once at safer levels his immune system will be comparable to a newborn baby.... We just have to continue to be patient and thankful that he is doing so well.

Last week he had a routine full body MRI scan to check for any visible evidence of disease.  Ryan has scans approximately every 3 months.  There is no set protocol for this but we agreed with his consultants to alternate between MRI and MIBG and to do bone marrow biopsies every 6 months.  I have seen him have this scan so many times but it still amazes me that at his young age he can lie in the scanner for 40 minutes or more, completely still!  I didnt take a photo this time but this is the last scan in July 2013 and it was exactly the same this time (although Gareth has finally stopped wearing shorts!)  We await the results.....

If you look carefully you can see his toes!

And now on to the next exciting adventure for Ryan - next month we are going to take him on a ski-ing holiday to the French Alps.  Ever since Ryan was born Gareth has been planning to take him away ski-ing as soon as he was old enough, but we have never had that opportunity. He did have a few hours on ski's on a of couple days while we were in Germany which he really enjoyed and he seemed to be a natural but that was just before he suddenly became very poorly.  But now as he no longer has his central line, he is feeling good and as he is not currently able to fully participate in school we decided it was a good time.  We are going to drive and have booked an apartment and will be able to have family stay with us so Ryan really is going to have loads of fun and is very much looking forward to it.  It feels almost unreal to me that we are making these plans, planning does not come easy after years to only being able to take things day-by-day, it is scary but exciting at the same time, part of me wants to wrap him up in cotton wool and the other part wants to make up for all the years lost in treatment.  We try and fill Ryan's life with fun and happiness, where ever we are we try to always give him happy memories that we hope will eventually outnumber any bad ones and we will always try and do our best for our gorgeous boy.

A few of our favourite photo's from Euro-Disney

     

We wish you a Merry Christmas

Its been another month since I updated and such a lot has happened and its all good.

Our holiday in Euro-Disney was just perfect from the journey, to the hotel, to the weather whilst we were at the park and the way we were looked after while we were there.  Ryan had a wonderful time, we all did.  Miles, the owner of Peak Performance Gym that gave us the break, had a friend at the park Karen, and with the help of her friends and contacts within the park she arranged some special surprises for us like a night at the Wild West Show, a personal meet and greet with the character Stitch and a pass which allowed us to avoid the queues - for once we really did feel very lucky and very spoilt.  

When we left Euro-disney Ryan's adventure wasn't over as then it was an overnight stay in a hotel near London ready to meet Father Christmas at Lapland UK - Ryan thoroughly enjoyed the day, helping the elves in the toy workshop, decorating gingerbread men with Mother Christmas, ice-skating and then meeting the big man himself, Father Christmas.  He had been a little nervous, worrying that he would be disappointed and that it wouldn't be the REAL Father Christmas and only a 'helper' but as soon as he left the cabin in the woods his smile said it all - It was the REAL Santa - he has finally met him!!  If you follow us on Facebook you will have seen our photo's but if not click here and here for the Euro-Disney photos and here for the Lapland UK photo's. (I hope the links work!)

Ryan is excited for Christmas, he has been counting down the days, his sack is ready and there are presents under the tree ready to be ripped open on Christmas morning.  Just as it should be.  But for us just being here at home with Ryan feels like a miracle.  With the complications that Ryan experienced things could have been so different and although we don't like to dwell on that it is the harsh reality.

At this time of year our thoughts are especially with the families that we have met over the course of Ryan's treatment, we feel privileged to have met these families but especially to have known their remarkable children.

We wish everyone following our story a very Happy Christmas, cherish all the important things this year and focus on what makes Christmas really special, your family and friends.  

Ryan's even bigger Christmas Surprise!

Gareth, Ryan and I meet Miles Leeson, Beccy Shields and Luke Tillen at Peak Performance Gym in Torquay

Yesterday Ryan met Miles Leeson of Peak Performance Gym Torquay, it is a meeting he wont forget for a long time, as Miles is giving the three of us a trip to EURO-DISNEY! I dont think Ryan quite believes it yet but we go on Friday so it will soon be real for him.

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