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!