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.

Sunday, 18 November 2012

A busy week

This week has passed quite quickly really:
Monday - Clinic
Tuesday - Clinic, MIBG injection and initial scan
Wednesday - MIBG scan; MRI scan, Clinic
Thursday - Hospital free day
Friday - Clinic

It was quite a manic week really as we have had early morning appointments almost every day so have been up and out the door with just enough time to get all of Ryan's medicines into him.  He has been really good about the tests this week.  These are routine re-staging scans as it has been 3 months now since the last tests in August.  He is used to doing these scans without sedation or GA but the Doctors here were not convinced that Ryan could cope with a full body MRI scan without a GA.  They must have asked us on at least half a dozen occasions if we were sure he didn't want a GA.  It was very unusual for such a young child they said.  Ryan got quite upset at one point and asked why no one believed him!

But he did it.  Here he is going into the machine and also emerging 1 hour 5 minutes later!  He got rewarded with a huge chocolate medal and a cuddly Zebra!  He said 'Wow! In England I only get a sticker!' The staff did laugh.


Before the MRI Ryan had had an MIBG scan - this was also an hour long scan but half way through the machine broke and so he had to come off the scanner and sit and wait for an hour while an engineer attempted, but failed to repair the machine! A very testing morning for him but he did it without any tears, but he did know that for every minute of the scans he was earning 10 microsoft points for him to spend on his x-box live for games and accessories! Thank goodness for the x-box I say! 

This week his blood results have been quite stable, although still very low; his HB is now only 7.4, his platelets 24 but his WBC is good at between 2-3 (with the help of regular GCSF injections) He may well end up needing a blood transfusion on Monday but we are waiting as he has been feeling ok in himself, albeit a bit tired.  We haven't had the results of the most recent HLA test to check if any of my T-Cells are detectable yet and we haven't had any scan results.  We should get both next week.  Our next clinic appointment is on Monday but we probably won't hear anything until later in the week.

At the sun was shining yesterday we took Ryan to another coaster ride that we found.  It was very cold but Ryan was well wrapped up and he really enjoyed the ride down the hillside.  It wasn't as big as the last one but it also wasn't as expensive so he had lots of goes and recorded a video especially for anyone wanting to see it.  The quality isn't great but Ryan's commentary is funny.  Click here to see it.

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