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.

Tuesday, 19 March 2013


Ryan has managed to sleep at the parents house since being discharged to the day clinic last Wednesday.  It has meant a trip into clinic each day, the first morning after being discharged we had to be in at 9 and were still there at 1, other days have been shorter visits although nearly always an hour or two.  

Ryan blood counts seem to have stabilised again, and the need for GCSF (to stimulate the white blood cells) is reducing.  His platelets and HB, both of which are effected by ECP, have also stabilised but its possible that he will need transfusions of both next week when he has ECP again.

We had good news on Friday, based on the previous monday's blood test, that the level's of adenovirus in the blood plasma had reduced to 'less than 1,000' and the HHV-6 virus is now only in the leukocytes and not in the blood plasma.  Both of this is great news and shows that Ryan's bone marrow is slowly recovering and fighting against the viruses, together with the anti-viral medications.

Ryan is managing to eat sufficient to maintain his weight, his appetite still isn't really there yet but he understands that he has to eat if he wants to stay out of hospital.  His tummy is still effected by GvHD and so we have to be careful what foods he eats but he has found some things that both he and his tummy like.  

As the levels of the immunosuppressent in his blood reduce the GvHD of the skin has become more noticeable again.  His skin looks 'irritated' more than anything.  Sometimes a rash is clearly visible, then other times it is gone again.  His blood pressure caused problems again this weekend, causing him to wake up with a headache and nausea and as soon as we got to clinic he was sick and then fell asleep.  Apart from this he has mostly felt ok since leaving hospital, he is still exhausted and very ready for bed at 7.30pm,  in fact if it wasn't for the schedule of medicine that runs from 7am until 7.30pm he would be asleep much earlier i'm sure.

Here is a photo of the tablets he is taking each day - in addition to this there are 8 syringes of medicine and a steroid mouthwash…..

We had expected an overnight stay in hospital yesterday (for the drug meant to contain the adenovirus) but when we arrived at the ward at 9am laden with suitcase containing the x-box and clothes and bags of food and medicines we were told that an emergency admission during the night meant that Ryan's room had to be allocated (although not sure why no one rung us) and so we are now expecting to be admitted tomorrow……

Wednesday, 13 March 2013

Today Ryan is being discharged to the parents house here in Germany.  Good news I know but for some reason I feel more anxious than excited.  Now he has to eat to maintain his weight, now he has to drink a minimum of 600ml a day.  He has a continuous infusion giving him the essential vitamins and minerals that he is loosing through his kidneys, via a portable pump.  He is far from being well but he is pleased to be leaving hospital after 6 weeks, although the doctors and nurses have all been fantastic.  Every day we will need to come into hospital to the day clinic for a new bag of fluid, for IV antibiotics, GCSF and blood tests.

On Monday we were told that the adenovirus that was in the stool has now also been found in the blood.  The blood test was taken last monday, and at that time the levels of virus were classed as low.  This is a huge concern, as this can be a very aggressive virus, and Ryan's t-cells (which are needed to fight the virus) are still being very suppressed by the numerous medications he is on.   The result of virology tests take several days to analyse and so you only know the situation days ago and not the current situation. 

Ryan blood counts, that had been stable, have started falling again.  We are struggling to get the levels of the immunosuppressant drug (tacrolimus) right, we have to reduce this drug slowly but currently it is still having too much of an impact on his blood counts.  He has need a blood transfusion and platelets in preparation for a further treatment of Extra Corporal Photopheresis (he now has two 4 hour sessions a fort night).

The doctors therefore took the decision to stop the daily IV anti-viral, as this also has an immune suppressing effect, and have further reduced tacrolimus.  Over the course of the next week this should allow the t-cells to multiply, they simply have to.  There is obviously a risk involved in stopping the anti-viral as this targets the HHV-6 virus that is also present in the blood.  The other worry is that if the T-cells multiply too quickly the GvHD will flare up. 

He has been having a drug targeting the adenovirus, every fortnight, and this involves an overnight stay in hospital as he has to have fluids before and after the drug to flush it out of his body.  His next treatment is next Monday and so he knows that he has to come back into hospital then but just for one night. 

Ryan has been feeling very homesick lately, he is tearful at some point most days, the last thing we need is for to get discharged and then to have to be re-admitted and so we are not making too much fuss about him staying at the parents house.  As you can imagine this is a very stressful time; I am trying to stop my insides freaking out but end up feeling like I am holding my breath.  We are trying to focus only on today, deal with what we know today, how Ryan feels today and not think about anything else.  

Saturday, 9 March 2013


I haven't really got much change to report, some things have been getting better and some worse, each day it seems that Ryan has another symptom to deal with.

This past week his blood pressure has caused problems again and so the medication had to be increased to 4 times daily, meaning we need to give him tablets during the night.  The kidneys have continued to 'leak' minerals and so an ultrasound of Ryan's liver and kidneys was done to look for possible causes but nothing obvious was found.  And so Ryan has needed to have a continuous infusion of amino acids which replaces the minerals he is loosing and has remained an in-patient.  The doctors are now arranging a portable pump so that Ryan can become an out-patient with daily visit to the clinic and then sleep with us at the parents house.  It is hoped that this will happen sometime next week.

I cannot remember the last time that Ryan actually ate something significant, for example yesterday he ate a third of a banana, thats it, nothing else. He is drinking water and has tried energy shakes but simply has zero appetite and feels full or nauseas.  So he is still very weak and exhausted, his stomach is bloated and he is very thin, which I find upsetting to see, especially as he was at his heaviest ever weight just days before the GvHD started.  

When you look at the numerous medications that he is currently taking it is no surprise that he doesn't feel like eating, each day he has to swallow around 40 tablets/syringes of medicine, (it was more than this) some are to supplement his body and some are prophylactic medicines like anti-virals, anti-fungals etc.  At present all are essential but this can't help the situation with his stomach or appetite.

The viruses remain present in his stool and blood but are not currently causing problems, we just have to wait for his t-cells to multiply and destroy them.

The good news is that the steroids, which have the biggest impact on suppressing his immune system, have been stopped.  The other immunosuppressent drug has been reduced.  His blood counts have been quite stable since the new stem cells have grafted and he hasn't needed a blood or platelets transfusion for about 10 days now.  The GvHD on his skin is barely visible, his mouth is still slowly improving, his liver enzymes are 'ok' but his stomach is slightly worse again as we try and introduce foods.  The GvHD is still clearly effecting the gut, and could flare up again if the immunosuppresent drugs are reduced too quickly.  It is all a very fine balancing act to get the levels of drugs right - enough to control the GvHD but not to increase the side effects.

Monday, 4 March 2013

Justgiving

Thank you to everyone organising events to raise funds for Ryan's treatment. If you have created a justgiving page and want the proceeds to go to Ryan's Appeal please make sure that you are listed on the Team Page: Here is the link to check:

http://www.justgiving.com/teams/ryanedwards

This page shows our running total and all the individual pages that have been created.

If your page is not showing then you need to click on the 'Join the Team' hyperlink at the top of the list of teams or follow the link below (you should be able to select Ryan's Appeal as your designated appeal) and then check again:

https://www.justgiving.com/login?returnUrl=%252fteams%252fryanedwards%252fjoin%252f

If you need any help please get in touch here or by e-mail to ryansappealpage@hotmail.co.uk

Thanks so much to everyone helping us raise the money needed for Ryan's treatment, we really do appreciate it more than you will ever know x

Unfortunately the improvement in Ryan didn't last longer than 24 hours; the nausea and headaches returned the next morning and he continued to feel exhausted.  The levels of the immunosuppresent drug present in the blood are now less than half of what they were and so the doctors informed us that the symptoms are probably due to the low levels of sodium in the blood.  Several other levels are also low such as magnesium and phosphate but sodium is the most effected.  Ryan had been taking tablets to supplement his sodium but these were not enough to raise the levels.  The exact cause of these low levels are not known but it is listed as a side effect of the immunosuppresent drug…..

And so on Saturday he was started on a continuous infusion of sodium which has slowly been increasing the levels in his blood.  By Sunday the difference in Ryan was noticeable, the nausea had gone and he was much brighter in himself.  He started eating, albeit very small amounts, but at least that is better than nothing and a step in the right direction.

Another piece of positive news is that yesterday Ryan's platelets incremented, without a transfusion, for the first time since October.  They were 34 on saturday and today they are 66.  Still a long way to go until they hit normal ranges (150-600) but a positive sign that the stem cell boost that was infused 19 days ago has grafted and his body is trying to produce new cells. His HB seems stable but his white blood cells are still being suppressed by the steroids and immunosuppresent medication.

And finally we would like to wish my lovely niece Chloe, who is 18 today, a very Happy Birthday.  We are all sad to be missing her birthday celebrations but hope that she enjoys her special day.