Ryan's story

Ryan was diagnosed with Stage 4 High Risk Neuroblastoma N-MYC amplified in July 2008. He was out of treatment for just over a year when in November 2010 our lives were again turned upside down when we discovered the disease had returned in his bones and bone marrow. After a year of treatment re-staging scans in November 2011 showed that he had again achieved remission.

However just 3 months later, in February 2012, end of treatment scans gave us the devastating news that the disease has returned, this time with a tumour near his spine. In March Ryan started 4 weeks of radiotherapy followed by chemotherapy which is on-going. Re-staging scans in May and August showed no evidence of disease. On the 4th September 2012 Ryan received treatment in Tubingen for a haplo-identical stem cell transplant. He is a happy, active boy who is now enjoying life to the full.

Friday, 24 October 2014

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.


Tuesday, 12 August 2014

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!   




   

Saturday, 3 May 2014

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.


Monday, 10 March 2014

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




Friday, 24 January 2014

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