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.

Monday, 30 September 2013

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.

Friday, 13 September 2013

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.