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! 

Another month closer to Christmas!

Well the past month seems to have flown by. Ryan is well and we have only had one hospital visit since the last update, when Ryan had venesection (blood draw to reduce the over load of iron) and immunoglobulin (to support his rubbish immune system).  We now only get blood results every four weeks - when we came home in July it was twice weekly, you get dependent on these results, its like a full MOT and having such a long period between results has taken some getting used to.  The most recent results have all been good - Ryan's ferratin level (which measure the iron overload) and liver enzymes (which reflect the inflammation in his liver due to toxicity of medication and iron overload) are both at a record low since our return home.  Both still have some way to go before they are in normal ranges but we are getting there.  His t-cells are slowly increasing but are unfortunately still very low and not high enough to stop preventative anti-virals and anti-biotics.  His lung function is again improving although the decision was made not to stop his inhaler or the medication for his airways at the moment.  We are just waiting for the latest result from Tübingen to give an up to date picture of his autologous t-cells, the last test was 2 months ago.....

All in all we are experiencing the longest period of normality that we have had in a very long time, which is both wonderful and weird at the same time.  Ryan is enjoying his sessions in school and as of this week he will go into school for 2 hours on a Tuesday and Wednesday morning.  He is joined by a small group of children from his class and really enjoys the sessions.  We have also incorporated the break time into his time at school although he is finding this a lot harder.  He is not used to being in the company of so many children, who are running around burning off some excess energy.  To him the running and chasing is frightening, as he is worried that if he joins in someone may grab his t-shirt and pull his central line.  And so he mostly observes what the other children are doing until a time that he feels happy to get more involved, but small steps in the right direction.

It hasn't helped that he doesnt really know anyone in his year and so when a couple of the boys asked Ryan is he was coming 'football after school' we found out about the after school football club and joined.  When I started this blog I said that playing in a football team is something that Ryan has always wanted to do - and he has always wanted to play on the school football field that we pass whenever we leave our house.  I felt very emotional seeing this become a reality, seeing his excitement running around the pitch, seeing him push himself to keep up with the others and managing to join in for the whole hour long session, he has even scored a goal!  He still amazes Gareth and I, and his consultants too!

It is hard to imagine that this week it is a year ago that, thanks to Make A Wish, we took him to meet his hero Travis Pastrana in Dusseldorf.  He now has the framed signed poster proudly on his bedroom wall.  Such a lot has happened since then and we feel very lucky to be where we are today.  This is the first Christmas in many years that we can actually look forward to, Ryan has spent the majority of Christmas' in hospital. And so this year, thanks to the generosity of 2 wonderful local charities, we are making plans to give Ryan a Christmas to remember, we are keeping the plans secret from Ryan until nearer the time but will be sure to share photo's.

Finally, and on a separate note, the charity that have supported us and that we fundraise with, The NCCA UK, has a national event starting in Exeter with Ryan.  Please come along and show your support to the NCCA UK's Cycling Santa's who start their 800 mile cycling challenge by delivering Christmas presents to children fundraising with the charity, starting with Ryan at the Toby Inn, Middlemoor, Exeter on Sunday the 1st December. The Santa's will be meeting Ryan between 9.30-10 am and we would love as many as possible to come along and see them off and if you needed another reason to get out of bed early on a winter's morning then how about a Toby 'all you can eat' cooked breakfast?  Hope to see you there......

All is well here, Ryan has recovered from pneumonia although still has a slightly lesser lung function than before he became ill but hopefully this will continue to improve in the weeks to come.  He has regained his appetite and put on some badly needed weight so looks and feels good again.  He had his first hour session at school on the 2nd October and really enjoyed it.  It was just him and his tutor working together in a room within the school but it was the closest to school that Ryan has ever had and a huge milestone for all of us.  There were no tears (from either of us) I just felt so proud of him as he walked to school with his tutor.  The following week he was less enthusiastic but still enjoyed the session and has now been four times and seems happy to finally be part of school.  He is joined by a couple of children from his class when possible and this will help him greatly, as working alone can feel like all work and no play! 

Here is the photo I posted on Facebook for those of you that didn't get to see it: 

Ryan still has the same issues that he came home from Germany with: an inflamed liver due to the toxicity of medication -  some of which he still needs; iron overload due to the numerous blood transfusions he has had over the years and still some of his own autologous t-cells lurking around; but none of these things have an impact on how he feels.  His full blood count has been stable and strong for the past few months and his lymphocytes are slowly, slowly increasing which should mean that his immune system is starting to recover.  All in all everything is good.

When we returned from Germany we brought with us a large folder containing copies of Ryan's medical expenses since the start of the year.  These have now been fully audited by NCCA UK, the charity that hold the funds for Ryan's appeal and without the support of whom our lives would have been so very different.  They have confirmed that Ryan's total treatment costs to date amount to £214,007. The total amount shown on just giving is showing as slightly more than this but just giving fees need to be deducted and some monies are showing on just giving but have not yet been received by the charity but the long and short of it is that we are very close to have raised enough to cover the monies outlaid by the charity.  This is a truly wonderful feeling and without the overwhelming support we have had from family, friends and everyone out there that was touched by Ryan's story this would not have been possible.  Gareth and I never dreamed that we would be able to raise this much money since March 2012 and I for one have been brought to tears on a number of occasions by the generosity of total strangers.  Ryan still finds it funny seeing his face on tins and posters in the local area and often points and says to people 'That's me!'  Thank you to everyone that has helped us, from the bottom of all of our hearts.

So what now? Any money raised in excess of Ryan's existing medical expenses, and any money raised in the future will remain in his appeal, to be used exclusively for any future treatment that Ryan might need.   We know that there are treatment options available in Tübingen and the US and that these would cost money.  But when the medical opinion is that Ryan is out of danger of relapse (say 5-10 years time) the money will be used by the charity to pay for the treatment of another child that is in urgent need of treatment outside of the UK.  Gareth referred to it like an insurance policy for Ryan, this is a good way of looking at it.  No one wants to claim on their insurance but everyone needs the security of knowing it is there, just in case.  

No one can predict the future and sadly there are no guarantees that this will be the end of treatment, that the vile cancer neuroblastoma will never rear it's head again.  After all Ryan has relapsed twice and we will never again take life for granted.

So our appeal for Ryan will continue, albeit without the urgency that we had at the beginning but knowing that we are giving him options should be need them. And, in the hope that he never will need more treatment, in the knowledge that the money raised in his name will help give a future to another 'Ryan' in the future.

Ever since Ryan was diagnosed we have learnt to live life by the day and enjoy every minute and that is what we fully intend to do. Here is Ryan today, seeing him looking so well is absolutely priceless: