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.

Wednesday, 30 January 2013

Why does bad news always follow good news??

First the good news: as at this week Ryan's t-cells are now 100% donor derived, none of Ryan's t-cells can be detected.  The GVHD rash is being controlled well with cellcept (a drug which 'puts the brake' on the new t-cells) and the steroid and immune suppressant creams and his temperature was consistent but quite high at around 38.0.   Over the past week he has been feeling quite well and enjoying a bit of fun in the snow and even a bit more ski-ing!

The plan was to begin reducing the cellcept on Monday to half a dose and monitor the rash and temperature. 

On Monday we were told that Ryan's situation was discussed at the weekly meeting and the feeling was that a stem cell boost should be planned sooner rather than later.  The purpose of the stem cell boost is to give Ryan a strong bone marrow as his newly grafted marrow has been attacked by his own t-cells for so many months that no-one can predict how long it would take to recover.  Until his counts recover he will remain blood products and GCSF dependent and be at great risk of infection. The beauty of a haplo transplant is that Ryan's blood and mine originate from the same stem cells, mine! And so on Friday I start a 5 day course of injections to force my body to produce stem cells and next Tuesday they will be harvested in the same way that they were before over a six hour period.  And so on Monday I underwent a series of blood tests and investigations to check I am fit enough to undergo the harvesting process.  Although this is not something I am looking forward to it is amazing to think that I can help Ryan recover after all he has been through and I will do it gladly.

And here is the bad news : by Monday evening his temperature had increased and continue to increase reaching 39.4 at it's highest today.  On arrival at clinic we were told that yesterday's blood results showed that his liver enzymes were elevated and this concerned the Dr's as it was an indication of inflammation of the liver - the cause of which they suspect to be either GVHD or a virus. His CRP marker was also above normal range today and Ryan was very tired and slept for hours in clinic.   To give a complete picture an ultrasound of his liver was performed which confirmed it was enlarged and showed signs of inflammation.  And so the consultant in charge of Ryan decided to treat both possible causes immediately by starting him on high dose steroids to address the GVHD and IV anti-biotics and anti-vitals until the result of the relevant tests are known.  They are also considering doing a needle biopsy of the liver if the liver enzymes are further elevated tomorrow.

This evening his temperature in closer to 38 again and he is feeling a little better although hasn't felt like eating all day.  Hopefully tomorrow things will look a little better all round.

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