An update on Ryan

Our trip to Tübingen went according to plan with no surprises; we didn't wait for the results of t-cell analysis or virology before heading back for home but the night before we left we were lucky enough to have timed it right so that it was the 'Thursday Parents Meal' but this time the meal was prepared by a turkish family, whose daughter had recently had a haplo identical stem cell transplant.  They prepared a feast of wonderful food and invited the doctors and nurses from the transplant unit.  Ryan stayed up late so that he could try some of the food and was pleased to see his favourite male nurse Luca again.  The following day we managed to squeeze the rest of our belongings, including 2 toboggans, into the car and headed home.

We received an e-mail from Tübingen last week confirming that the HHV-6 virus remains in the leukocytes, adenovirus is still positive in the stool, liver enzymes continue to gradually reduce and that autologous t-cells were stable at 11%.  Nothing new but no real improvements either.  However Ryan's bowels started to improve in Tübingen and have continued to do so which is a good sign that his body is starting to recover.

Whilst in Germany we discussed what happens next for Ryan.  The plan from the start was for Ryan to have the haplo stem cell transplant and then to have 6 cycles of anti-body therapy. The same antibody that he had in Greifswald, Germany in 2011 but with a new immune system.  However the optimum period to start the antibody therapy is between 60-180 days after transplant.  Today Ryan is day +301.

In addition he is the only child whose own autologous t-cells survived the high dose chemotherapy, the conditioning part of the transplant; he is the only child to have had donor lymphocyte infusions which caused grade 3/4 GvHD and on top of that he has an inflamed liver and 2 viruses present in his body.  After thinking long and hard about the implications of this Gareth and I have decided not to take the anti-body treatment.  We feel that the risks are simply too high and that Ryan has been through enough.  We have done everything we can to try and stop this horrendous cancer from returning, his body has had the anti-body before and there is insufficient evidence to prove that he would benefit from receiving it now (even if that were possible).  And so that does mean the end of treatment, again.

The anti-body therapy itself was free, there was no charge for this as it was a clinical trial, although we would have had to pay for his supporting drugs and hospital admission.  However the complications Ryan experienced with GvHD and the extended hospital admissions and investigations have meant that our total medical bill is expected to be in the region of £300,000.  At present the charity, NCCA UK, are working through the paperwork for Ryan's medical care since the start of the year.  We will still need to return to Tübingen periodically; we are next due to return mid September and full re-staging will be carried out at the same time, but the major expenses are now, hopefully, in the past.  

We have been absolutely blown away to see our fundraising target has exceeded the £200,000 mark and are so very grateful for everyones support in keeping our fundraising going while we have been away.

But what does 'end of treatment' really mean? Ryan still has a number of issues requiring careful monitoring by the hospital but hopefully time in hospital will be limited to once a week, sometimes a quick visit, sometimes a long day, but still much more time at home which is exactly what he needs after so long away from home.

Every 2 weeks we will be sending blood to Tübingen in order for them to do the specialist blood tests to monitor the level of autologous t-cells.  It is hoped that in time these will slowly reduce and disappear altogether.

Every week Ryan's liver enzymes will be checked to ensure they continue to fall, or at least remain stable.  This week we will begin drawing blood from Ryan (about 200ml) and replacing it with saline, as this is the standard way to reduce the level of iron in his body.  Lowering the level of HB should allow the deposits of iron in the liver, and any other organs, to leak back into the blood, therefore reducing the liver inflammation. This will be repeated every 4-6 weeks and unfortunately can take anything from 12-18 months. This will mean that Ryan's hickman line cannot be removed unless he wants one rather large cannula's in each of his arms each time - A BIG 'NO' from Ryan in answer to that question!

His electrolytes are also checked weekly and last week we managed to stop the sodium supplement, which means that he is now only taking potassium.  This is a great sign that his kidneys are recovering.  His drugs have reduced to about 12 doses of medicine daily as opposed to almost 50 at the highest point!

His blood will be checked to ensure that it is negative to adenovirus, as while it remains in the stool there is a risk that it could appear in the blood.   

His lungs are also checked and have been improving so in about 2-3 weeks he will have a CT scan.  We are hoping this will show the lungs are clear which will mean that the steroid inhaler and drug to open his airways can be stopped.

Last week Ryan had a full body MRI, as it had been over 3 months since the last one.  Again he was amazing and lied still, covered in strapping and a head brace, for almost an hour. We are awaiting the results.

All in all things continue to slowly move in the right direction and Ryan is certainly feeling better as each week passes.  

He was very upset in the days after his friend Adam died.  We have spent lots of time talking about things with him and answering his questions; we are very lucky that he is so good at communicating his feelings and expressing himself.  Gareth and I usually have to wear a mask to hide our own feelings and so it has helped us greatly too being able to talk about things.

As the days pass the upset has turned to quiet times where he is obviously thinking about Adam but he doesn't always want to talk, and we don't force him as after all no words can really make the situation better.  We have been keeping him busy seeing people and doing fun things and at the end of one day when I asked him what the best bit had been he simply said 'I talked to Adam 3 times today, quietly so no one else could hear' and he gave me a big cuddle and said he felt happy.

Last week Ryan also asked us directly how his friend Jamie was and it felt wrong not to tell him the truth, that Jamie too had died after not being able to wake up from the special sleep that Ryan knew he was in.  We explained that we hadn't wanted to tell him at the time as he was feeling so poorly himself and he had enough to deal with.  He was very quiet again but said he understood why we hadn't told him and was glad that we told him now.  Such a lot to deal with at such a young age but in time we know that he is going to be ok.