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.