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

Ryan's Christmas surprise

Ryan was very excited to find a letter from Father Christmas waiting for him under the Christmas Tree inviting him to visit him in his snowy woodland home in Lapland UK (http://www.laplanduk.co.uk). He is very excited, and a bit nervous!, as has never had the opportunity to go to see Father Christmas before and has spent most of his Christmas's in hospital. Big thank you to the local charity Dream-A-Way for treating Ryan to this magical experience and to my lovely friend Shelley for putting Ryan forward for this Christmas time treat. Another tear jerking experience for me but it will be happy tears!

Next week Ryan finds out another big surprise!