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.

Friday, 29 March 2013

A lot has happened in the ten days since my last update.  Some significant good news in that the adenovirus that was in the blood has gone (as at the test taken 18th March) although it remains in the stool.  However the HHV-6 virus remains in the leukocytes.

Ryan developed a cough a couple weeks ago, a dry non-productive one, but as it continued a CT scan was done as this could be a sign of GvHD of the lungs.  Nothing showed on the scan but the cough is no better and a further CT will be done if it doesn't resolve.  His skin has also continued to get worse, especially the palms of his hands and soles of his feet which are bright red and inflamed, so much so that it is often too painful for him to walk.  This is being treated with steroid and immune-suppressant cream but isn't improving. His arms and legs are also covered in a red bumpy rash and really looks quite awful.

Unfortunately Ryan has continued to have blood pressure problems, needing an echocardiogram to check there was no fluid around his heart. His liver enzymes have become elevated again and not stabilised resulting in an ultrasound to check for veno occlusive disease and then, as the enzymes continued to rise, an emergency liver biopsy yesterday.  Ryan needed to stay in the ward overnight as there is a significant risk of secondary bleeding, luckily there are no signs of this having happened.

The results of the liver biopsy yesterday won't be known until next week due to the Easter break.  The consultants believe the cause of the problems to be either a virus attacking the liver or a return of GvHD although have said it could be toxicity of medication or even a relapse of neuroblastoma.... To try and stop further inflammation of the liver Ryan has been started on IV anti-virals again and his hydro-cortisone dose has been increased.

On top of all this we are at the time for the dreaded re-staging which means full body MRI and MIBG scans.  The hour long MRI took place earlier this week and the MIBG scan is scheduled for next Wednesday/Thursday.  Bone marrow tests may also be needed.

All in all it has been a rubbish couple of weeks for Ryan and a stressful time for Gareth and I.  My parents arrived for a visit this week and we had hoped to spend time with them at the apartment they rented but that hasn't happened as the majority of time has been spent in hospital.  But Ryan has enjoyed seeing his Nanny and Grandad and hopefully once he is discharged today he will be able to see a little more of them tomorrow and before they leave on Sunday, although he still has to spend a few hours each day in clinic.

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