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, 23 October 2012

Playing the waiting game....


I hate waiting, thoughts of what might happen are sometimes hard to keep at bay.  But we have been keeping as busy as we can and making the most of Ryan feeling well while the sun is shining.

After clinic on Friday we came back to the parent’s house and there were some children playing at the house, 2 girls which were sisters of children that were having treatment.  Ryan didn’t waste any time and didn’t need the usual encouragement to join in.  He ran outside and didn’t stop playing for a good couple hours, scooting, playing football and running around the house and garden.  It really was great to see him being so active, the most active that he had been in absolutely ages.

Saturday though he woke up complaining that his leg hurt when he walked, my stomach always turns when he complains of pain.  But realistically he had used his muscles more the day before than he had in weeks and so we tried to encourage him to try and walk properly when he needed to but he spent all the morning playing x-box on-line with friends and sure enough his leg improved (and I could breath again).


On Sunday any aches and pains from the day before had gone and the sun was shining so we told Ryan we were going out for the day.  Gareth had been looking on the internet for something to do and had found that the second longest dry toboggan run in Europe was within 2 hours drive.  This is the website www.hasenhorn-rodelbahn.de if you are ever in this area! It really was worth the drive just to see Todtnau, the beautiful village that it was in.  The toboggan or coaster was set on the side of a mountain, we caught a chair lift to the top and the views on the way up were spectacular. If you can zoom in on the photo you will see Gareth and Ryan.

Then the coaster took you back to the bottom – 2.9km of railed tracked to be precise and Ryan screamed all the way the first time down.  It took about 4 minutes even going ‘flat out’!  Gareth and Ryan were together with me trying to keep up behind, it was great fun.  Gareth videoed the ride and we will try and upload it to YouTube – but be warned there is lots of screaming, Ryan did enjoy it although he does sound a bit terrified at times!  He loved the second time more I think when he knew what to expect.

                                

Then yesterday it was back to reality and a clinic appointment at 9.30a.m.  Ryan blood counts have all dropped.  Not plummeted, just dropped.  They are allowed to drop, they usually peak and trough apparently but the question is are Ryan’s dropping because of the situation that he is in or are they behaving normally and dipping before they pick up again?  No one can answer this question today – we have to wait until we get the next blood results on Wednesday……..

Vanessa is back at the house today with her mum and dad as she has scans and tests this week to see if she can start the next phase of treatment.  Ryan didn’t get to meet Vanessa in person as he was in isolation when she was at the house and was unusually shy when he saw her yesterday morning but soon got over that and has already introduced her to the joys of minecraft!


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