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.

Tuesday, 28 August 2012

Visit to Tübingen

I completely forgot to mention our visit to Tübingen last week for the tests needed for being Ryan's donor. We arrived early evening on the Wednesday as we had to be in clinic for 8.30am on the Thursday. Ryan went to my sisters again for 'The Sleepover II'. He was excited and looking forward to it this time and when we dropped him off Wednesday lunchtime as we got to the front door he said 'I'll say goodbye to you now cos I'll be too busy playing in a minute!'

As you can see from this photo taken from the the bridge across the Neckar river in the centre of Tübingen, it really is a beautiful town. It has a completely different feel to Griefswald, where Ryan had his immunotherapy treatment last year. Although the next time we go we wont see much of it for quite some time as we will be with Ryan in isolation in hospital but we will have plenty of opportunity once he is well again.

I have to admit to feeling quite anxious as I sat in the waiting room. I was eventually called in to see the nurse and it was immediately apparent blood was the first thing to be tested. I saw my name on a little pot containing 5 empty vials, I didnt see that all the other pots behind also had my name on! When the nurse picked up 4 little pots I laughed and said 'They aren't all for me are they?' 'I'm afraid they are' was her reply. Gareth said my face was a picture and he had great pleasure counting the vials and announcing that there were 23 that needed to be filled.

After that it was just routine tests; ultrasound, x-ray, lung function, urine tests and ECG. The hospital was very organised and there was very little waiting between tests. Then there was a short wait before a talk with the consultant in charge of the stem cell collection procedure. She talked us through what was required of me, the side effects and the risks involved. In short I will need to have injections twice a day for 5 days from the 13th - 17th September to force my body to produce stem cells, then on the 17th and 18th I will have one line inserted into each arm, the tubing will connect me to a cell separator machine and my blood will flow out of one arm, inside the tubing, to the machine where it will spin around at high speed. The spinning separates the different components of the blood into layers based on their weight. The stem cell layer will then be collected and the remaining blood will be returned via the other arm. This process takes approximately 5 hours, each day. Enough said about that then.  I've borrowed some chick flicks to try and distract myself.  We were shown the room where this will take place, there can collect from 4 patients at any one time and you have to remain in bed for the duration of the process but Yes you can be disconnected to use the bathroom - I asked!

My stem cells are then processed by a laboratory and will be given to Ryan fresh the following day.

We have also been in touch with the parents house where we will be staying and were pleased to here that they are expecting us. They didnt have a problem with us arriving late in the evening and will be leaving a key for us as we anticipate arriving between 10-11pm on the 3rd September as Ryan is due in hospital on the 4th.

Ryan told me yesterday that he is quite excited about going to Germany. When I asked why he said he wants to see his new hospital room, he can play the x-box as long as he likes, he gets his new x-box games and he will be 'duffing up' his baddie at the same time. That just about sums him up.

We havent pretended to him that is going to be easy, we have explained the treatment to him in a way that he can understand; he knows that his baddie is in for a big fight and he knows that is going to be hard on him, he will feel rubbish, have a sore mouth and tummy, will sleep much more than he wants to but although he hears all of this he only focuses on the positive things and that is what will get our beautiful boy through this.

Monday, 27 August 2012

More good news...

We heard last week that Ryan's bone marrow aspirates that had been sent to Vienna show no evidence of disease - the result we had been praying for.  There had been a delay and initially they had found 7 cells that had been classified as 'suspicious' and these had needed further analysis.  These have now proven not to be neuroblastoma.  Subject to receiving the results of the bone marrow trephines (the core of bone) this will mean that Ryan remains in remission, for the third time in his life, which will put him in the best possible position for the haplo-identical transplant.

Ryan continues to look and feel really well, he has been happy and active and has been enjoying all his early birthday presents.  He has been to the skate board park with a couple friends and his new JD Bug scooter which he loves and has generally been having lots of hospital free time.

This weekend we took him to a fund raising day at the Coaver Club who have made Ryan their charity of the year.  As the weather held off and all the events could take place outside there is less chance of Ryan catching an infection and so we decided to let this be his last day of mingling with so many people - he had a great time on the bouncy castles, penalty shoot out, dancing, and generally running around like a looney.  His energy amazed people, those that knew him and those that met him for the first time, he really is an amazing boy and I really believe that his attitude helps him cope with everything that he has to endure.

On paper his counts have been stable, his platelets are hovering around the 20's, his HB is holding around 8 (borderline for a transfusion) and his neutrophils are wavering around 1 and so he has needed the odd shot of GCSF.  He is having a count tomorrow to see if he actually needs blood this week and on Wednesday he has been invited to a day out courtesy of CLIC Sargent at an airfield and has the chance to fly in a small aircraft with one parent (Gareth) and apart from that we are having a much quieter week to ensure that he remains well before travelling to Germany.

Sunday, 19 August 2012

Good news!

We heard on Friday afternoon that all Ryan's scans are fine! I have to be honest and say i had prepared myself for the worst, as we had been waiting just over a week for the first scan, and so the feeling of relief really was like a huge weight being lifted. This is the news we prayed for and what we needed in order to proceed with the transplant.

We are just waiting for the bone marrow results......

Wednesday, 15 August 2012

The Birthday Party...

Ryan loved his early football birthday party!  When I started this blog I said that Ryan has always wanted to play in a 'proper' football match and now he has - his friends and cousins meant that he had a 5-a-side football match, they also did penalty shoot out and skills training.  Ryan loved every single minute! Even a shower of rain didn't seem to be noticed.  Massive thanks to Ed for organising the football and for helping make Ryan dream come true.  Thanks also to Exwick Civil Service Club who kindly didn't charge us for the use of their facilities.

This week Ryan has more tests, yesterday he had an MRI, which involved him lying still inside the extremely noisy MRI machine for approximately 50 minutes.   To explain exactly what is expected of him I really have to show you a photo - he is strapped to the table, unable to move.  The sound from the machine is almost deafening at times and so he has to wear headphones to protect his ears.  His music of choice is played into the headphones and this time it was Alvin and the Chipmunks.  Once he got fed up with that Gareth talked, well shouted, to him very loudly trying to keep him distracted.  He did so well and managed it without any tears. 

Tomorrow he has a CT scan and an ultrasound, both of which will be a breeze compared to the MRI.  We are still waiting for the results of both the bone marrow tests and the MIBG scan from last week - I so hate the waiting and was pleased to have the party to focus on at the weekend.  Since then I have to say that the waiting has sometimes got the better of me and I find it hard to concentrate on anything else.  
It never gets any easier waiting for results and it's not something I get used to but you just have to get on with life and wait.

Thursday, 9 August 2012

Ryan had a great weekend and got to go out on his motorbike with his mate Jack. I havent been to watch the last few times, as i have enough stress to deal with in my life as it is, but this time Ryan talked me into it. They were both very good and go far too fast for my liking!

This week though has been far from great. On Monday Ryan had bone marrow trephines (a core of bone) and aspiates (liquid) taken from both sides of his back under GA. While he was asleep the consultant also had to do nasal aspirates which involved washing out his nasal passages with saline. This was requested by germany to identify any potential infections prior to transplant. But there wasn't any mucus there, only a couple boogies apparently! Unfortunately, despite having gone to sleep quite happily, ryan woke very tearful, sobbing uncontrollably for quite a while. He didnt seem to recognise Gareth or I for what felt like ages. Apparently he had wriggled during the procedure so was given additional anaesthetic which may have caused him to feel so emotional. The bone marrow was packaged up and sent to Vienna again for analysis and this time it was received in good condition and is currently being processed.

Tuesday was a quiet day at home with his x-box. He was very sore and stiff and after talking with his consultant we gave him some morphine which helped a lot. But his friend Ben came over for the afternoon and stayed for tea which cheered him up lots.

Yesterday we had to go to Bristol Children's Hospital for the first part of an MIBG scan. We put numbing cream on both his hands so he was ready to have a cannula when he arrived, which he really wasnt looking forward to. There were lots of tears and it really hurt when it went it and unfortunately really hurt when the radioisotope dye was injected so a rubbish time for him. But his back is loads better and he showed us by performing a dance act early in the morning!

We spent the night at Sam's (the clic sargent house) and all the staff there were pleased to see him. This morning he had to lie still for about an hour for the scan and we are heading home now and await the results.

This weekend we have arranged his early birthday party which he is excited about so at least after such a pants week he has something fun to look forward to!

Saturday, 4 August 2012

A change of plan.....

Ryan has continued to feel well, he is eating well and so looks the best he has in weeks – and is incredibly cheeky!  We have been seeing friends and family when we can but next week the tests start and so things will begin to get a bit more boring for him than they have been.

We had some shock news this week.  We heard from Tuebingen that they want to change the donor to me instead of Gareth.  We got an e-mail which simply stated that I was a better match than Gareth, me being an 7 to 8 out of 10 match whereas usually parents are 5 out of 10 or thereabouts.  

As you know we had originally been told that Gareth was the donor based on the fact that I had antibodies to a virus in my blood that could cause life threatening problems for Ryan during transplant.  Knowing this and then learning that they wanted me to be the donor caused us much concern until we managed to discuss this with our consultants.  Dr Lang, from Turbingen, has since explained that he feels that the risk to Ryan due to the virus in my blood is classed as Low.  There are also new, effective drugs that are available to control this virus during transplant.  It is also felt that the fact that I am a closer match to Ryan should reduce the risk of his body rejecting the stem cells and also reduce the risk of him getting graft versus host disease.  And so I am the donor.

Those that know me may even find this fact quite amusing, having heard the tales of me passing out on numerous occasions, mainly due to my needle phobia!  It is certainly not something that I am looking forward to doing but I will do it, I would do anything for Ryan …..but why does it have to involve needles and blood! And of course there is Ryan’s reaction – he simply said ‘Well, I am not happy!’ Then we explained what the doctors had said (as simply as we could) and that they know best.  He has accepted this change of plan but does get a bit tearful about it as he still doesn’t want me to have any needles (and he doesn’t even know how I feel about them!)

The fundraising is continuing to go well, thanks to the constant support that we are getting from friends and family and others that have been touched by Ryan’s story.  There was another article in this week’s Express and Echo – here is the link:
http://www.thisisexeter.co.uk/Kenny-using-pedal-power-help-Ryan/story-16632600-detail/story.html  The article focuses on Kenny Corrick who is cycling from John O’Groats to Lands End in just 7 days to raise money for Ryan.  Kenny met Ryan today when he called around to pick up some bits for a stall he is running at the Exmouth Festival tomorrow to raise awareness of Ryan’s appeal and of his cycle ride.  Gareth pointed out to Ryan that Kenny is cycling further than the distance that we will be driving to Tuebingen – but I still don’t think he quite gets just how far it is!  Kenny said that meeting Ryan has made him feel stronger than ever about what he is doing to help – he really wants to raise as much money for him as he can.  You can donate to Kenny’s fundraising with the following link:  http://www.justgiving.com/Kenny-Corrick or look out for him at the Exmouth Festival tomorrow (unless of course it’s pouring with rain!)