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, 31 May 2013

Last weekend we got to meet up with our friends for a couple of hours as we hoped and had a day out and about in the black forest.

On Tuesday it was back into clinic for IV medicine and, as a 'low level crackle' could be heard in Ryan's lungs, he also had a CT scan.

On Wednesday Ryan had more IV medicine in clinic and we were told that the the CT showed slight changes since the one they did at the end of March, which was an indication of GvHD.  Not the news that we wanted to hear by any means.  Ryan was therefore started on a steroid inhaler, more prophylactic antibiotics and a drug to open his airways.  

Today it was back into clinic again for more IV medicines and we got the results of the autologus t-cells which showed an increase from 9% last week to 15%.  So a week of disappointing news really, although looking at Ryan we can only see improvements.  He is eating and sleeping well, slowly gaining a little weight and gradually feeling stronger and we are very thankful for that.

We are hopeful that we may be able to return home for a couple weeks sometime in June and will be talking to our consultants here and in the UK next week to see if this weeks developments will change things.

Sunday, 26 May 2013

On Wednesday i updated our facebook page with the following update: (don't get too excited as the news changed on Friday).

Last week we didn't get any t-cell results but were shocked to learn that adenovirus had showed up again in Ryan's blood. They repeated the test on Friday and it felt like a long wait until Tuesday when we learned the test was negative again. The virus is obviously trying to rear its head but the t-cells are keeping it at bay at present. We were also told that the virus was no longer detectable in the stool which is the first time in months. 

But the best news was that all t-cells are now 100% donor, no autologus t-cells exist. Now we just want this weeks blood, stool and t-cell test results to show the same great results! 

In himself Ryan is feeling ok, he still gets tired easily but there is still so much going on in his body. But at the weekend we took him to a theme park for a few hours and he had a great time on the rides, and is still a bit of a speed demon! It was a great feeling to see him having some fun.

That was the update i was going to put on here too but then on Friday we got the results from Tuesday's blood and t-cell analysis:
'The adenovirus is negative and autologus t-cells are 9%....'
'Sorry did you say 9% - last week it was 100% donor?.......' 

Apparently, on closer inspection, errors were found in the results and the analysis had 'failed' or so they think. It is a sensitive test and we knew it could sometimes 'fail' but still. 
And so 9% is an improvement on the result of 11% 2 weeks ago so we have to be thankful for that. 

As Ryan's GvHD symptoms are under control the immune suppression has been reduced again and so we simply have to wait until the end of next week for the next results. I forgot to state in the last update that the virus HHV-6 remains in the leukocytes but not in the blood plasma.

We have had some hospital free days but the weather has changed so we haven't been up to much. Tomorrow though we hope to meet up with friends who our touring the area on their motorbikes, weather permitting.  Not posted a photo for a while so here is a recent one:

Monday, 13 May 2013

Ryan has felt quite well the past week and has been a bit more active, like walking from the room to the car, from the car park to the hospital, nothing spectacular but an improvement none the less.  He had 2 sessions of ECP (extra corporal photophyreresis) which makes him feel tired for the rest of the day but other than that seems to have been feeling ok, in fact better than he has in a long while.  The ECP treatment had been 2 sessions every fortnight but will now be 2 sessions every 4 weeks.  We are slowly reducing the immune suppressant and Ryan's t-cells are increasing without any adverse effects, at present anyway.  His blood counts are also increasing and his white blood cell count and neutrophils are now stable in the normal range for the first time in what feels like years.

This is obviously great news but although I am happy about this, I don't feel happy.  I have an overwhelming feeling of sadness because of circumstances that two families close to our hearts find themselves in.  I have thought so much about what I want to say here in this blog as saying nothing feels wrong, it has kept me awake at night, but it is simply too painful to truly convey how upset we feel about what is happening to both families.

Ryan has been very close to his friend Adam since meeting him in Greifswald in 2011, the boys had a connection right away and this has remained despite the fact that they don't get to see each other very often.  Adam has had to return home from the US due to complications with treatment.  His disease has not responded.  There is no more treatment out there.  In himself Adam is doing ok, he still has his defiant streak, his quick witted put downs to his Dad and Gareth if they monopolise FaceTime.  He and his family are constantly in our thoughts. 

During our time in Tübingen we have become friends with another family who are now in similar circumstances. This weekend we went to Munich to meet up with Tobias and his family and another family that we have met here.  Tobias relapsed a couple weeks ago, his treatment also failed after what looked like really promising news a couple weeks earlier.  Tobias is 12 and understands his situation, again there are no more treatment options.  I can't really put into words the courage that he has shown dealing with this news, he has a list of things he wants to do and has had a busy few weeks.  This Saturday he watched a football match in Munich stadium, something he has wanted to for a long time. 

Please keep Adam and Tobias, and their families, in your thoughts and prayers.

Saturday, 4 May 2013

It's been an eventful week again; I wrote the last update while Ryan was having ECP, he was having a lesson with this teacher and feeling fine. Within minutes of posting the update things changed suddenly.  Ryan eyes were wide and he started to wretch, he went as white as a ghost and he lips went blue.  We called for the nurse and she took his blood pressure which was dangerously low.  She called for help and 2 doctors and more nurses came rushing in.  His bed was tilted backwards so his head was lower than his heart and we managed to keep Ryan awake by talking to him while the doctors interrupted the ECP machine and made it start to return his blood quicker than it had planned to.  Apparently 'this sometimes happens' as too much of Ryan's blood was in the machine and not in his body causing his blood pressure to plummet.  As soon as the blood was returned he started to regain colour and his blood pressure started to improve.  Panic over.  

He was tired for the rest of the day and then during the evening and night his temperature started to rise and he woke several times with diarrhoea.  We spoke to the doctor in the Day Clinic the next day and he said that provided that Ryan was ok in himself we should just monitor the situation and 'see what happens'.  As the levels of steroid had been reduced earlier in the week it was not a complete surprise that Ryan would get a temperature and the upset tummy could be a flare up of GvHD.  It was the first time we had 3 hospital free days since January and so none of us were keen to go into hospital unless it was absolutely necessary, and as he was well in himself we just stayed at the parents house.  However on the Tuesday morning it was clear that Ryan was not right, he woke with a headache and felt sick and was quite sleepy.  When we got to clinic as planned for an infusion of anti-fungal medicine he fell asleep.  His blood pressure was fine, his blood results showed he had a raised infection marker but nothing more than that. We talked through the last few days with the doctor and he suggested that Ryan needed a higher level of hydrocortisone due to possible poor absorption due to the diarrhoea.  We gave him a higher dose and within an hour he was his usual self!  The temperature and diarrhoea have both settled again and tests on the stool have shown no pathological cause.

The next day, Wednesday, they suggested we had a check up to see what the infection marker was doing and it had halved.  However they then had the results of the previous Thursday's t-cell analysis which showed over 30% of t-cells originated from Ryan and so they urgently got the results of the test done the previous day which showed 12%.  It is therefore possible that the fever and diarrhoea over the weekend were a result of the two immune systems 'battling'.  No one will know for sure, but either way the increase in autologus t-cells is not a good thing.  However as Ryan was again feeling well the consultant was able to reduce the immune suppressant, Cellcept, by 25% to try and allow Ryan's new donor derived t-cells to become more active and overpower his original ones.  We have to wait until Monday before another analysis of the t-cells is done and hope to get the results soon after.

All in all the past week started badly but has ended with Ryan feeling ok again.  We have no hospital this weekend and hope that he will continue to feel ok although he still has very little energy so we won't be doing very much.  What we really need is to see the back of the autologus once and for all, but at the same time we don't want a flare up of GvHD - such a fine balance to get things right and such a long time to get there but it will be worth it.