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, 13 November 2012


Putting in print what happens in our lives is often difficult but lately it has highlighted more than ever what it is like to live this life and to get piece fed information.  It seems to me that as soon as I put something into print then I am contradicting it – I am.  This is exactly what it is like for us, the doctors tell us something, something that they believe to be true and then something else happens and it’s all change.

And so today we were told that the chimerism test showed that between 1-5% of Ryan’s blood originates from him.  When the test was done about 2 weeks ago the results were between 40-60% from Ryan.  So this is good news.

This now contradicts the information given to us on Friday when the HLA analysis indicated that both the T-Cells and neutrophils originated from Ryan – the feeling is that if this were true than the chimerism test would show a higher percentage. 

And so the tests will be repeated and again we wait for the results, and continue hoping and praying for a miracle to happen.

In the meantime Ryan’s HB seems to have stabilised at between 7.7 – 8.0  They don’t really want to give blood unless it is essential and so are happy for Ryan to drop lower than the usual limit for a transfusion providing he is feeling well, which he is.  His platelets are also relatively stable at just 20.  His WBC is above 3, thanks to the GCSF injections and so on the face of it he is supporting himself by the skin of his teeth!

We found out at 9am today, we went in for a blood count at 8.30, that Ryan was in fact scheduled to have an MIBG scan tomorrow.  This meant that today he needed to be injected with the radioisotope dye.  Usually we have a cannula for this injection as the dye has stuck in his hickman line on previous scans, highlighting what appeared to be  a suspicious area but there was no time for cannula’s today, there was only just enough time to give him the medication that protect’s the thyroid from the radioactive injection!  The first scan is today at 2.45 and the second tomorrow at 8.30 followed by an MRI.  A rubbish day tomorrow for Ryan then! But he wants to do both hour long scans without a general anaesthetic and so as soon as they are done he will be able to leave the hospital.  He is a very grown up little boy.

1 comment:

  1. He is so brave and grown up - sending love and we wait some more... Jackie xx

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