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, 12 April 2013

Life is a roller coaster......

A few days after my last update we had some unexpected bad news during a routine clinic visit: the Adenovirus and HHV-6 viruses had both reappeared in the leukocytes as at the blood taken 1st April (within the white blood cells). 

A few weeks ago we learned that the company that manufactures the only drug available to contain the virus has had to stop production due to microbiology problems and it was not available for the foreseeable future.  This is a worldwide problem and has very serious implications for patients with the virus in the blood.  After discussions with the consultant here Gareth and I were tested to see which of us had the most effective t-cells against the virus and yesterday Gareth had about 500ml collected to be prepared ready to be given to Ryan should the copies of the virus in the blood increase.

In addition we were shocked to learn that although there are now good numbers of T-Cells 13% of these were now Ryan's.  Apparently they had first appeared at the end of February and had been increasing 'a couple percent each week'.  I think the doctors in the day clinic had thought we had known this already and so had not mentioned it, they said it was very unusual to see reemergence of autologous t-cells with active GvHD and could not explain it other than to say Ryan's were 'incredibly strong'. 

At this level they are not a huge threat, but obviously have potential to be a massive problem.  Currently as the GvHD of the gut and liver has improved and the mouth and skin are improving slowly we can start to reduce the remaining immune suppressant and so on Monday we reduced hydrocortisone from 3 x 15mg to 3 x 10mg (Ryan's usual dose is 3 x 5mg). 

The only adverse reaction so far has been an increase in temperature and so hopefully next Monday we can reduce again.  Then the remaining immune suppressant, Cellcept, will start to be reduced.  The reduction has to be done slowly as doing this too quickly could allow the T-cells to become too aggressive again and trigger GvHD.  It is a balancing act, with huge consequences either way.  The outcome we are looking for is obviously for the immune suppressant to be gradually weaned off allowing the donor derived t-cells to destroy the  autologous t-cells and viruses but not causing Ryan problems.  

On Wednesday afternoon we finally got the results of the outstanding virology tests of the liver biopsy which confirmed that the inflammation of the liver was caused by toxicity of medication.  As there was no evidence of virus infection this meant that yesterday Ryan was not given the daily 2 hour IV infusion of anti-viral medicine.  This is very toxic and makes Ryan feel tired as well as suppressing his bone marrow and we were pleased that this could stop.

We also got the results of the re-staging scans and were thrilled to learn that both the full body MRI and MIBG scan showed no evidence of disease.  Ryan has bone marrow tests planned for the week after next for completeness. 

And today we got the results of this Monday's blood virology and were really pleased to learn that the ADV virus is again gone for the leukocytes, although the HHV-6 virus is still present.  The adenovirus is however still present in the stool.  

This week Ryan has had two 4 hour sessions of ECP (the UV light treatment for GvHD).  It usually makes him feel very tired but he has fought off the tiredness well as his auntie and cousins are here visiting. Despite spending so much time in hospital it has really lifted his spirits to see them all which is just what we were hoping.  

For the past few days the doctors have been reducing the levels of electrolytes in the portable pump.  It is the only way to see if the kidney has recovered as the levels will not become high, they will just become stable within the normal ranges.  Since the reduction most have remained stable within normal ranges although a few more tablets have been added until we are sure that they are not needed intravenously.  Today the pump was disconnected and the next few days will show whether his kidneys have stopped 'leaking'.  Ryan is so happy to be free and not connected, it is the first time since being admitted to hospital on the 1st February that he can move around freely without worrying about being connected and it is truly lovely to see him enjoy his freedom.

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