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, 30 November 2012

Ryan Edwards meets Travis Pastrana!

Inside the empty arena watching practice sessions
We are people who are late, for everything.  But yesterday we knew that we couldn't be late and so we were deliberately early and ended up arriving in Dusseldorf at 4pm for a 6.30pm meeting with Travis Pastrana!  We killed a bit of time and then Sally the lady from Make A Wish UK (who had flown over especially for the wish) arranged for us to meet at the ISS Dome at 5pm.   When we arrived we asked the Tour Manager where we could sit and wait for Travis but he asked us if we would like to watch the practice while the stadium was empty.  Wow! We jumped at the chance.  There was an hour of practice before the show and we got to watch 45 minutes of motorbikes doing backflips, jumps, tail whips and every trick in the book.  He also saw big jumps and stunts on skateboards, roller skates, BMX and scooters.  The only other people in the stadium were press photographers!  

It was fantastic, we hadn't expected to see any of the show and had prepared Ryan just for a quick meeting with Travis.

Next it was time to go backstage and wait for Travis with Ryan literally pulling us along.  We got to a room backstage and sat and waited.  All of a sudden Travis appeared in the room 'Hi Ryan, I'm Travis!'  And at that moment Ryan's dream turned into a reality.  Travis chatted to Ryan like a friend, they had a high five and sat next to each other on a tote box talking.  Ryan had wanted to show Travis a photo of his motorbike because he had Travis' number 199 on the side and so out came the iPad and he got that chance.

Ryan meets his hero Travis Pastrana

Ryan had thought of some questions that he wanted to ask Travis:
What is on your christmas list? Who would you most like to meet? Which was your most painful accident? Great questions! Ryan and Travis both had something in common - they both want to be at home for christmas with their families - lets hope that comes true for both of them.  Ryan was also lucky enough to meet Josh Sheehan, Joleene Van Vugt, Lyn-z Pastrana and Adam Jones together with several other members of the team. He got a signed poster and t-shirt and I know that it will be on his bedroom wall for many years to come.  After chatting away to Travis and Josh for about 35 minutes a security guard came to tell Travis he was needed in the VIP area to meet all the people that paid to get that bit closer to the stars of the show (these are the tickets we had paid for in London).  Ryan made sure he got a goodbye hug from Travis and was ready for him to leave but instead Travis said 'Hey why don't you come with us?'

with Travis Pastrana and Josh Sheehan

Oh my god! I don't think we could believe it! Ryan said 'Travis can I meet Lyn-z please?' and so while everyone was waiting Travis took Ryan into a changing room where Lyn-z was setting up her skateboard ready for the show.  Ryan had been waving to her during the practice and they had a quick chat before the three of us and Sally and Travis and about 9 of the Nitro Circus crew walked through the corridors backstage towards VIP area.  Along the way we bumped into other members of the team and each time Travis would stop them and introduce them to Ryan explaining what did in the show.  For me this was the best bit seeing Ryan walking next to such a huge super star gazing up at him and the look on his face said it all.

Then we had to take the lift up to the VIP area.  To be crammed in a lift with such famous, yet down to earth, people was a very surreal experience.

with Jolene Van Vugt

Ryan saw the reaction of the crowd when Travis walked out into the VIP area and waited excitedly for him to return.  The show started at 7.30 and so eventually the time came for Travis to leave us.  I had worried that Ryan might get a bit upset but he didn't, he gave him another hug and said Bye, and just before Travis disappeared into the VIP lift Ryan shouted 'Bye Trav' and they waved a final goodbye.

Sally, on behalf of Make A Wish, gave Ryan some spending money and he bought a t-shirt, programme and key-ring.  I can honestly say that Ryan was made to feel the happiest person in the world yesterday, he was treated like one of the gang and absolutely loved every single minute.  I am sure that these memories will remain with Ryan forever.

We cannot thank Travis Pastrana, the Nitro Circus crew and Make-A-Wish enough for giving us all this opportunity of a lifetime.  Seeing Ryan bursting with happiness was the best feeling ever and this day will give us all a good feeling for a very long time.

To end : Ryan telling his friends about his experience. Ryan:  'I saw TRAVIS yesterday!!'
Friends: 'Who?' 

Wednesday, 28 November 2012

Ryan's dream comes true

If you know Ryan you will know he loves Travis Pastrana. He has watched him for hours on YouTube, watched DVD's and his life story. Ryan wants to be like Travis, Ryan had a quad bike when he was two and a half and a motorbike when he was 5. Before he last relapsed we bought VIP tickets to see him at the O2 next month but obviously we cant go. We decided to contact Make-A-Wish to ask if they could help Ryan meet Travis while he is doing his european tour. They contacted their US team, who contacted Travis who said YES!

We are driving (5 hours) to Dusseldorf today and meeting him tonight at 6.30pm! Wont be able to see show but Ryan understands why and also knows that no-one else will getting a private meeting.

He didnt really believe it when we told him. He said 'seriously' 'are you sure!'
Then a bit later he said ' Its not going to be like meeting Santa on that Santa flight is it?' (The Santa was so obviously not the real Santa, you could see the elastic on his beard!) 'No we said this is going to be the real thing!' Ryan did a Big Smile!

Saturday, 24 November 2012

Still waiting....

Our first hospital free day this week was Thursday. we didn't do much, it's quite cold so Ryan had more x-box time and I caught up with washing and shopping etc. 

On a Thursday at the parents house, a lovely lady called Barbara who works here cooks for the parents.  She says it's part of her job but the amount of trouble that she goes to each and every week shows it is more than that.  The meals are lovely and it is the only evening where lots of parents from different families sit together and chat.  It is always a really nice evening,  the topic of conversation almost always starts with everyone reporting about how their respective children are doing, and nearly always not everyone has a positive story to tell, but we are all silently able to support each other, just by totally understanding how they feel, without them having to say the words out loud.

This week I helped with the preparation of a local dish, which I can't spell, but which was similar to a ravioli. It was nice to be taught something new although I'm not sure I could make it all from scratch myself!

Ryan then had blood counts on Friday and needed to have platelets, GCSF and immunoglobulin (which supports his poor immune system).  We were in hospital for about 4 hours but they were quiet in the day clinic for a change and things went very smoothly.  The doctors do not seem particularly concerned about the low counts this week, they say his white blood cells are still responding to GCSF and that this weeks chimerism still shows that 97% of his blood still originates from my donated stem cells.  and so we continue to hope and pray that the miracle happens and my T-Cells soon start to destroy Ryan's.

This past week we have also been very worried about our little friend Jamie, he started first course of antibody therapy here in Germany.  He had picked up a bit of a chest infection and so his original start date was delayed until the infection had gone but he had been off his food and didn't go into the treatment his usual lively self.  The antibody treatment was very tough on him, there are so many severe side effects all of which could also be attributed to other causes but are classed as 'normal' for anti body e.g. Low blood pressure, fever, cough, pain, low oxygen levels, high blood pressure - the list really does go on.  But then Jamie had a seizure early one morning, followed by another within the hour, he had a fever and initially this was thought to be the cause but Jamie was experiencing so many other symptoms at the same time that an emergency CT and lumbar puncture was performed.  The CT showed chronic infection in Jamie's lung, but then the following day an MRI of the brain was done as a virus was identified and it has been confirmed that he has signs of an infection in his brain.  At the same time as all of this Jamie has had GVHD causing a skin rash and this had appeared to worsen at the same time as his counts dropping.  It now seems that the majority of these symptoms are attributed to the HHV-6 virus.  Jamie has been moved back into isolation and has started a treatment targeting the virus - we hope and pray that he makes a full speedy recovery.

And then there is Adam, I know several of you follow his dad Nick's blog, I have found it difficult to mention what was going on with Adam as there was so much going on and so much uncertainty. But he is always in my thoughts.  He was due to return to the states for a further course of chemo and re-staging. But instead he spent weeks in hospital in the UK with unexplained fevers and pain making him unfit to travel.  Eventually, and after resorting to removing his line, the fevers subsided and he was able to return to the US where it was confirmed that his disease had progressed, as his family had feared.  He has been feeling really poorly and almost immobilised by pain for many weeks and has only started to feel better this past week.  He has started another new combination of chemotherapy and we want more than anything for him and his family to get some good news soon. Ryan still speaks to Adam at every opportunity and he has even persuaded his Dad to buy him an x-box so the two of them can go on an on-line rampage killing baddies! We are very much looking forward to hearing him screaming and shouting down the headset as soon as he feels well enough. 

Wednesday, 21 November 2012

Ending with some good news....

We have had clinic every day so far this week and the week started with disappointing blood results. 
On Monday Ryan HB had dropped to 7.1 and his platelets were just 5.  The blood test was repeated and his platelets were 10 - both well below the limit for transfusions so a bag of platelets were ordered urgently for that afternoon and a bag of blood for the following day.  His platelets had been stable in their 20's the previous week and no one can give us an explanation as to why they might have suddenly dropped.  The only glimmer of good news was that his white blood count was still good.

On Tuesday, when we went in for the blood transfusion, his WBC had also dropped and so he was given some GCSF to boost it up again.  The doctors told us that they were planning on giving a further infusion of T-Cells the following day.

Today we went in for the T-Cells but had to wait 3 and a half hours while the analysis of the cells sampled on Friday was finalised.  Eventually it was confirmed that there was no change and all the T-Cells were still Ryan's.  So a further infusion of 50,000 of my defrosted T-cells was given.  

But it was worth the wait; this afternoon we found out that Ryan's MIBG and MRI scans were both clear of disease; Ryan remains in complete remission!  We will never ever take this for granted and, although we can't waste energy worrying about it either, it is always a relief to be told this wonderful news.

Sunday, 18 November 2012

A busy week

This week has passed quite quickly really:
Monday - Clinic
Tuesday - Clinic, MIBG injection and initial scan
Wednesday - MIBG scan; MRI scan, Clinic
Thursday - Hospital free day
Friday - Clinic

It was quite a manic week really as we have had early morning appointments almost every day so have been up and out the door with just enough time to get all of Ryan's medicines into him.  He has been really good about the tests this week.  These are routine re-staging scans as it has been 3 months now since the last tests in August.  He is used to doing these scans without sedation or GA but the Doctors here were not convinced that Ryan could cope with a full body MRI scan without a GA.  They must have asked us on at least half a dozen occasions if we were sure he didn't want a GA.  It was very unusual for such a young child they said.  Ryan got quite upset at one point and asked why no one believed him!

But he did it.  Here he is going into the machine and also emerging 1 hour 5 minutes later!  He got rewarded with a huge chocolate medal and a cuddly Zebra!  He said 'Wow! In England I only get a sticker!' The staff did laugh.


Before the MRI Ryan had had an MIBG scan - this was also an hour long scan but half way through the machine broke and so he had to come off the scanner and sit and wait for an hour while an engineer attempted, but failed to repair the machine! A very testing morning for him but he did it without any tears, but he did know that for every minute of the scans he was earning 10 microsoft points for him to spend on his x-box live for games and accessories! Thank goodness for the x-box I say! 

This week his blood results have been quite stable, although still very low; his HB is now only 7.4, his platelets 24 but his WBC is good at between 2-3 (with the help of regular GCSF injections) He may well end up needing a blood transfusion on Monday but we are waiting as he has been feeling ok in himself, albeit a bit tired.  We haven't had the results of the most recent HLA test to check if any of my T-Cells are detectable yet and we haven't had any scan results.  We should get both next week.  Our next clinic appointment is on Monday but we probably won't hear anything until later in the week.

At the sun was shining yesterday we took Ryan to another coaster ride that we found.  It was very cold but Ryan was well wrapped up and he really enjoyed the ride down the hillside.  It wasn't as big as the last one but it also wasn't as expensive so he had lots of goes and recorded a video especially for anyone wanting to see it.  The quality isn't great but Ryan's commentary is funny.  Click here to see it.

Tuesday, 13 November 2012

Putting in print what happens in our lives is often difficult but lately it has highlighted more than ever what it is like to live this life and to get piece fed information.  It seems to me that as soon as I put something into print then I am contradicting it – I am.  This is exactly what it is like for us, the doctors tell us something, something that they believe to be true and then something else happens and it’s all change.

And so today we were told that the chimerism test showed that between 1-5% of Ryan’s blood originates from him.  When the test was done about 2 weeks ago the results were between 40-60% from Ryan.  So this is good news.

This now contradicts the information given to us on Friday when the HLA analysis indicated that both the T-Cells and neutrophils originated from Ryan – the feeling is that if this were true than the chimerism test would show a higher percentage. 

And so the tests will be repeated and again we wait for the results, and continue hoping and praying for a miracle to happen.

In the meantime Ryan’s HB seems to have stabilised at between 7.7 – 8.0  They don’t really want to give blood unless it is essential and so are happy for Ryan to drop lower than the usual limit for a transfusion providing he is feeling well, which he is.  His platelets are also relatively stable at just 20.  His WBC is above 3, thanks to the GCSF injections and so on the face of it he is supporting himself by the skin of his teeth!

We found out at 9am today, we went in for a blood count at 8.30, that Ryan was in fact scheduled to have an MIBG scan tomorrow.  This meant that today he needed to be injected with the radioisotope dye.  Usually we have a cannula for this injection as the dye has stuck in his hickman line on previous scans, highlighting what appeared to be  a suspicious area but there was no time for cannula’s today, there was only just enough time to give him the medication that protect’s the thyroid from the radioactive injection!  The first scan is today at 2.45 and the second tomorrow at 8.30 followed by an MRI.  A rubbish day tomorrow for Ryan then! But he wants to do both hour long scans without a general anaesthetic and so as soon as they are done he will be able to leave the hospital.  He is a very grown up little boy.

Saturday, 10 November 2012

Still no good news....

The T-cell analysis of yesterdays blood confirmed no change and all T-cells were Ryan's. Unfortunately further analysis showed that neutrophils now also originate from Ryan too. A detailed analysis of the rest of the blood has now been requested to check whether any counts now originate from my stem cells. This may take until middle of next week.

The implications of this new development are have not yet been discussed until the full details are known but its clearly not good news.

In the meantime Ryan is having daily GCSF injections to keep his WBC above 1 and by not having it IV he is able to have these out of hospital, he lets Gareth do it for him. He is really enjoying seeing my mum and dad and we ventured into Tübingen town centre yesterday and let Ryan spend some time and money in a massive toy shop. Its the first time he has been in town and although it was a brief visit, he really enjoyed it.

Thursday, 8 November 2012

Today's blood count was a little disappointing; his HB has dropped from 8.4 to 8.2; Platelets from 21 to 19 and the most important WBC from 2.1 to 1.1.

Ryan will have platelets today but we are going to wait a while longer for the red blood and see what happens. He copes well with low HB and would rather see his Nanny and Grandad who arrive later today for a couple days then have a blood transfusion.

A T-cell analysis was taken today and we anxiously await the results.

Tuesday, 6 November 2012

I feel half afraid to write this update, i dont want to jinx anything. So I will keep it brief.

On Monday we had clinic for blood tests. Ryan's HB was stable, his platelets had dropped but only by 10 to 22, but his white blood cell count was the best it had been in about 2 weeks at 2.3!

These results could indicate the T-cells given 2 weeks ago have started to attack Ryan's own T-cells. They could have been a false reading....

We went back to clinic today to check whether his platelets had dropped further and all his blood counts were almost identical to yesterday.

All very encouraging but too early to say what is happening... 'We must wait' as the Dr said today. Enough said.

Saturday, 3 November 2012

Still waiting...

Yesterday was a long day, we got to hospital at 9am and left at 4pm. 

The day started with an appointment in radiology to discuss the risks and side- effects of the Total Nodal Irradiation that will be given to Ryan's lymphatic system to kill his remaining T-cells.  The consultant in charge of Radiotherapy had to contact Bristol Children's Hospital to find out the exact dose of radiotherapy that Ryan's body has received before he was able to agree to giving him more treatment.  They had to determine exactly how much treatment each of his organ's has received in order to ensure that they did not exceed the recommended maximum dose.  Using this information they have confirmed that instead of giving Ryan the treatment in one dose, it will be split into 2 or 3 fractions which will reduce the biological dose of radiation his body receives, and will reduce the immediate risks.  Not the best start to a morning.  Then Ryan had to have CT scans and measurements so that they can ensure that the radiotherapy is only given exactly where intended.  He was really good for the scans right up until they drew 3 crosses on him and covered the crosses with a plaster - at which point he got really upset - plasters for some reason has always been something he absolutely hates on his skin.  They need to stay on until he has the treatment - and at present there is no set date...

Then we had a clinic appointment where we were anxious to learn Ryan's blood counts; it turns out that they had all dropped since wednesday, but only slightly.  This meant that he still has bone marrow function albeit a very poor one.  He was borderline for needing both a blood and platelet transfusion and so we are expecting to have both on Monday. At 3 o'clock we met with the consultant in charge and learnt that the T-Cell analysis was disappointing and showed that all of Ryan's T-Cells still originate from him, however the earliest that they could have had an impact was Wednesday and so all is not lost.  There were also certain markers in his blood count which the consultant found 'of interest' and showed him that the bone marrow was still functioning.  Because of this he informed us that he had decided that it was too soon to admit Ryan for re-conditioning and instead he was going to give Ryan 50,000 of my stem cells.  The first time Ryan had been given 25,000 and because these did not cause Ryan any adverse side effects, such as Graft Versus Host Disease (GVHD), the dose was doubled.  Whilst Ryan has some form of bone marrow function there is still a SLIM chance that the situation can be reversed and so the waiting continues.

Gareth and I were both quite surprised by this turn of events but very pleased.  The last thing we want is for Ryan to have more treatment unless it is absolutely essential. And so we both came away a little lost for words but happy to be in the position that we can continue waiting.

This weekend will be a quiet one due to his low counts and we have been given an injection of GCSF to administer to Ryan on Sunday in the hope that this will keep his white blood count and neutrophils where they are now - both are between 0.5 and 1.0. 

All the snow from last weekend has long gone but I thought you would like to see a photo of the snow we found at the castle last weekend and Ryan earlier this week at the park we found in Tübingen. (You can tell who always takes the photo's!)  I also wanted to thank you for the kind messages that we have received on our facebook page, by text and e-mail and to everyone that is praying for Ryan and sending him positive thoughts - we really do appreciate it and are sorry that we can't reply to everyone individually.

Thursday, 1 November 2012

Clinic had mixed news yesterday, his platelets are still dropping which is a sign of rejection but his other counts have responded to GCSF.... So no further forward. Had a meeting about radiotherapy which is not as clear cut as they had thought and involves a lot of discussion due to the levels of radiotherapy he has already had. We will find out more on both topics on friday.

Meanwhile Ryan is fine and really enjoyed a halloween treasure hunt in the garden last night with Jamie.