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:

More good news and a set back....

First the good news: On Monday 16th September Ryan had bone marrow taken for analysis.  Today we heard from our consultants that Vienna have reported that both the bone marrow aspirates and trephines remain clear of disease.  They tested over 4 million cells and found no neuroblastoma.  This is again fantastic news.

Ryan had another venesection on the 12th September and blood tests show that his iron overload is starting to reduce.  Although his inflammation marker (ferratin) is still massively elevated it is a great sign that it has started to reduce after just 3 venesections.

And then the set back; I noticed over the weekend following my last update that Ryan seemed to be getting out of breath on his scooter and running around.  When he was in hospital for his GA the following monday for the bone marrow tests he was given a thorough examination and although his lungs sounded clear, his lung function had reduced compared to his previous reading.  He had no fever to speak of, although was a little warmer than usual and was off his food a bit too.  It was suspected that he had picked up a virus and that hopefully he would improve in a week or so.

Over the next week his symptoms seems to get a little worse in that even going up the stairs at home caused him to become out of breath and sit down to recover his breathing.  I also noticed that his rate of breathing in the night was much faster than usual but still no fever etc.  By last Monday I was feeling really worried and asked to take him in for another examination.  His consultant decided to send him for an x-ray and agreed that he was puffing quite hard even at rest.  He still didn't have a fever to speak of and as long as he didnt do more than sit on the sofa or walk around he seemed ok and was in good spirits.

Ryan's consultant gave it some thought and decided that it was most likely that Ryan had developed a form of pneumonia caused by a parasite, which can be common in transplant patients.  He immediately started him a high dose of anti-biotic and thought that he would need between 14-21 days of treatment depending on how he responded. He has now been on the anti-biotics for a week and in the past couple days does seem to be starting to become less breathless which is great to see.

This set back has meant that Ryan didnt get to attend his first hour session at school but we are really hoping that can be re-arranged in the near future.

It's been quite a while since I last updated and that is partly because I hate writing an update when we are waiting for scan results, I am afraid if I write something positive I will be 'jinxing' the next thing I write but yesterday we got the news we had been waiting for.

Our consultants here in Exeter made contact with the team in Tübingen a few weeks ago and provided them with an update on Ryan and at our request asked if they were happy for the review planned for next week in Germany to be carried out in Exeter/Bristol - they agreed and so we can stay at home.  Ryan was really excited to hear this news although did say 'but that means that I won't get to see my doctors and nurses in Germany'.  We really do have a very good relationship with the team there and have every intention of keeping them up to date with Ryan's progress.  

Ryan has celebrated his 7th birthday and in his usual extravagant style decided on a laser combat party which we arranged for the saturday after his actual birthday.  Then the day before his birthday he decided he wanted to do something on the actual day and so off to Clip and Climb with a few friends we went.  He had a great birthday and really enjoyed his laser combat party despite the fact that it rained the whole time.  We were surprised at how well he coped running around the woods carrying a laser gun but he surprised us all - although was understandably exhausted the following day!

In between his birthday and the party we had to go to Bristol Children's Hospital for an MIBG Scan (to detect the presence of any abnormal cells or bones.) This scan is done over 2 days and so we spent the night in our usual room in Sam's House (a CLIC sergeant home from home) Ryan feels really at home in Sam's house and seemed to quite enjoy being there again.  Yesterday we heard that the scan was clear which, for me at least, was a huge relief.  Nothing can be taken for granted and never will be.

We have also had some results from Tübingen about Ryan's autologous t-cells: after two lost samples the third sample was processed and confirmed that they have reduced from 10% to 8%, another positive step.  

Another really positive step, well huge milestone, is that we have had a meeting with Ryan's school to discuss how he can be integrated into school.  To summarise a very productive meeting between the school, the hospital and myself it was decided that Ryan will not be able to join his classroom at the present time due to risk of infection from the 90 children he would be exposed to in the open style classrooms and the school policy regarding children with fevers.  However the school were keen to include him and are looking to find a suitable room where he can have his one-to-one tutor sessions with this current tutor.  Currently all such rooms are fully utilised but it is hoped that over the next weeks/months this will change and Ryan and his tutor can use a room at the school and be joined by a small group of hand picked children from his class.  He currently sees his tutor 2-3 times a week for an hour and a half each time.  So we have a long way to go before a full day at school can be achieved but at least we are again making small steps in the right direction.

Ryan really wants to go to school and be 'normal' but understands why this is not currently possible.  He is missing his friends now that the school holidays have finished but has learnt to tell the time and plans his day around 'when the kids come home'! Gareth has been back to work since we came home and I try and keep Ryan occupied at home, which is not always easy as we don't like him to be on his x-box too long.  But from a selfish point of view I feel very lucky to have this extra time at home with Ryan and plan to make the most of it. 

Lucky

Ryan clearly isn't afraid of heights!

Lately I have been very aware how lucky we are, so very lucky to be at home with our gorgeous boy.  

It has been wonderful to see Ryan doing normal things, he has been catching up with friends and family, although we still haven't managed to see everyone yet.  He has been enjoying days out at the beach, at Crealy, Pecorama, and the Minature Pony Centre, has visited his cousins in London and Southsea, visited Adam's family, as well as enjoying simply being home.  

He has gained almost 2kg since coming home in June and looks much better for it and his energy levels are slowly increasing.  He is loving his trampoline, his pushbike and scooter and has even been out on his motorbike a couple times.  I feel quite emotional seeing him doing these normal things - he has missed out on so much and we so want him to have a normal life.  It is easy to take things for granted when you start to get into a 'normal' routine but I am very aware how quickly things can change and how quickly your life can again be thrown into turmoil.  

In action on the zip wire

Medically Ryan is also doing well; his liver enzymes, although still elevated, are still gradually reducing, the full body MRI was clear, the CT scan of his lungs had improved and his diarrhoea has stopped.  His full blood counts are all stable in the normal ranges.  

Since the last update we haven't had any more autologus t-cell results as the cells had died by the time they were analysed in the lab in Tübingen and the next sample was not received - a further sample was sent off yesterday and hopefully we will have the results next week sometime.

Ryan has had 2 venesections (the removal of 120ml of blood to reduce the iron levels) and has had no adverse effects.  He is having immunoglobulin every 3 weeks (giving him an essential part of his recovering immune system as he is not yet producing any B cells) but apart from this is not receiving any other treatment.

Next month we are due to return to Tübingen for a review as Ryan will be one year post transplant.  Full re-staging is being arranged in Exeter and Bristol.  Re-staging is a horrid time.  Most of the time I can be rational and only worry about the things I know and not the things that might be, but sadly the fear of relapse never completely goes away.  

But next month is also Ryan's 7th birthday and so we are busy making plans for his party and looking forward to making his birthday a special one.

 

An update on Ryan

Our trip to Tübingen went according to plan with no surprises; we didn't wait for the results of t-cell analysis or virology before heading back for home but the night before we left we were lucky enough to have timed it right so that it was the 'Thursday Parents Meal' but this time the meal was prepared by a turkish family, whose daughter had recently had a haplo identical stem cell transplant.  They prepared a feast of wonderful food and invited the doctors and nurses from the transplant unit.  Ryan stayed up late so that he could try some of the food and was pleased to see his favourite male nurse Luca again.  The following day we managed to squeeze the rest of our belongings, including 2 toboggans, into the car and headed home.

We received an e-mail from Tübingen last week confirming that the HHV-6 virus remains in the leukocytes, adenovirus is still positive in the stool, liver enzymes continue to gradually reduce and that autologous t-cells were stable at 11%.  Nothing new but no real improvements either.  However Ryan's bowels started to improve in Tübingen and have continued to do so which is a good sign that his body is starting to recover.

Whilst in Germany we discussed what happens next for Ryan.  The plan from the start was for Ryan to have the haplo stem cell transplant and then to have 6 cycles of anti-body therapy. The same antibody that he had in Greifswald, Germany in 2011 but with a new immune system.  However the optimum period to start the antibody therapy is between 60-180 days after transplant.  Today Ryan is day +301.

In addition he is the only child whose own autologous t-cells survived the high dose chemotherapy, the conditioning part of the transplant; he is the only child to have had donor lymphocyte infusions which caused grade 3/4 GvHD and on top of that he has an inflamed liver and 2 viruses present in his body.  After thinking long and hard about the implications of this Gareth and I have decided not to take the anti-body treatment.  We feel that the risks are simply too high and that Ryan has been through enough.  We have done everything we can to try and stop this horrendous cancer from returning, his body has had the anti-body before and there is insufficient evidence to prove that he would benefit from receiving it now (even if that were possible).  And so that does mean the end of treatment, again.

The anti-body therapy itself was free, there was no charge for this as it was a clinical trial, although we would have had to pay for his supporting drugs and hospital admission.  However the complications Ryan experienced with GvHD and the extended hospital admissions and investigations have meant that our total medical bill is expected to be in the region of £300,000.  At present the charity, NCCA UK, are working through the paperwork for Ryan's medical care since the start of the year.  We will still need to return to Tübingen periodically; we are next due to return mid September and full re-staging will be carried out at the same time, but the major expenses are now, hopefully, in the past.  

We have been absolutely blown away to see our fundraising target has exceeded the £200,000 mark and are so very grateful for everyones support in keeping our fundraising going while we have been away.

But what does 'end of treatment' really mean? Ryan still has a number of issues requiring careful monitoring by the hospital but hopefully time in hospital will be limited to once a week, sometimes a quick visit, sometimes a long day, but still much more time at home which is exactly what he needs after so long away from home.

Every 2 weeks we will be sending blood to Tübingen in order for them to do the specialist blood tests to monitor the level of autologous t-cells.  It is hoped that in time these will slowly reduce and disappear altogether.

Every week Ryan's liver enzymes will be checked to ensure they continue to fall, or at least remain stable.  This week we will begin drawing blood from Ryan (about 200ml) and replacing it with saline, as this is the standard way to reduce the level of iron in his body.  Lowering the level of HB should allow the deposits of iron in the liver, and any other organs, to leak back into the blood, therefore reducing the liver inflammation. This will be repeated every 4-6 weeks and unfortunately can take anything from 12-18 months. This will mean that Ryan's hickman line cannot be removed unless he wants one rather large cannula's in each of his arms each time - A BIG 'NO' from Ryan in answer to that question!

His electrolytes are also checked weekly and last week we managed to stop the sodium supplement, which means that he is now only taking potassium.  This is a great sign that his kidneys are recovering.  His drugs have reduced to about 12 doses of medicine daily as opposed to almost 50 at the highest point!

His blood will be checked to ensure that it is negative to adenovirus, as while it remains in the stool there is a risk that it could appear in the blood.   

His lungs are also checked and have been improving so in about 2-3 weeks he will have a CT scan.  We are hoping this will show the lungs are clear which will mean that the steroid inhaler and drug to open his airways can be stopped.

Last week Ryan had a full body MRI, as it had been over 3 months since the last one.  Again he was amazing and lied still, covered in strapping and a head brace, for almost an hour. We are awaiting the results.

All in all things continue to slowly move in the right direction and Ryan is certainly feeling better as each week passes.  

He was very upset in the days after his friend Adam died.  We have spent lots of time talking about things with him and answering his questions; we are very lucky that he is so good at communicating his feelings and expressing himself.  Gareth and I usually have to wear a mask to hide our own feelings and so it has helped us greatly too being able to talk about things.

As the days pass the upset has turned to quiet times where he is obviously thinking about Adam but he doesn't always want to talk, and we don't force him as after all no words can really make the situation better.  We have been keeping him busy seeing people and doing fun things and at the end of one day when I asked him what the best bit had been he simply said 'I talked to Adam 3 times today, quietly so no one else could hear' and he gave me a big cuddle and said he felt happy.

Last week Ryan also asked us directly how his friend Jamie was and it felt wrong not to tell him the truth, that Jamie too had died after not being able to wake up from the special sleep that Ryan knew he was in.  We explained that we hadn't wanted to tell him at the time as he was feeling so poorly himself and he had enough to deal with.  He was very quiet again but said he understood why we hadn't told him and was glad that we told him now.  Such a lot to deal with at such a young age but in time we know that he is going to be ok.

Adam

          

We are very sad to tell you that yesterday Ryan's best friend Adam Bird passed away peacefully at home with his parents Nick and Alison holding his hands. 

We respect them both so much for always being able to make the right decisions for Adam and cannot begin to imagine how much the whole family will miss him. Our thoughts and prayers are with Nick and Alison and his big brother and sister Jake and Jessica x x x x 

Nick's blog

                      

Back in Tübingen

Our journey back to Tübingen didnt start well; we hadnt realised it coincided with the end of Glastonbury festival and so the traffic was at stand still several times on the trip to Dover. Then there was another jam due to an overturned lorry.... Needless to say we missed our train on the Eurotunnel and had another hour wait before boarding finally arrived at the parents house at 1.30am instead of between 9-10pm.

Whilst stuck in traffic we received a call from the Klinik asking if we could come for review on wednesday instead of tuesday as they were so busy. And so our first day was a free day and as the sun was shining, and we hadnt previously had much opportunity to enjoy the lovely city of Tübingen, we hired a paddle boat and spent an hour on the river Neckar in the beautiful sunshine.

Today we have klinik at midday and hope to get the results of Ryan's t-cells before returning home later this week.