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.

Monday, 25 June 2012

Ryan had a blood count last Monday morning and luckily his neutrophils, with a bit of help from GCF on Friday, had recovered sufficiently to start his third cycle of chemo.  This time he is having irinotecan and vincristine in the hope that his bone marrow will not be so knocked by the drugs.  This meant a trip to hospital every day, on the Monday he had both drugs and Tuesday to Friday he had irinotecan.  He was noticeably tired during the week but still refusing to sleep in the day or go to bed early. He has felt quite sick at times and so really wasn’t keen to eat anything much despite 3 anti sickness but they must have worked because he wasn’t actually sick.  Usually by tea time though he would be able to eat his dinner, which is normally spaghetti bolognese – thank goodness that he still enjoys his old favourite.  This time he also experienced jaw and back pain which are side effects of vincristine and occasional tummy ache. We continue the anti sickness on a couple days after he finishes the chemo and stop it on the Monday, today.

This weekend though he had his friend Josh’s birthday party treasure hunt at Haldon Forest and Ryan really surprised us by running around the forest looking for clues just like the other children.  He couldn’t always keep up but didn’t want a carry until almost the end, about 2 miles later!  Seeing him having fun is always wonderful and being able to go to parties is even more special as Ryan has missed out on so so many.

Then right after the party his mate Adam and family arrived for the weekend which was great, as Adam has wanted to check out all of Ryan’s toys for a long time.  We had thought it might be a quiet weekend, as both boys are having chemotherapy, but they crammed quite a lot into their time together; power rangers, x-box, wii, bouncy castle in the garden, footie in the park and a trip to the beach for crazy golf and a game of dodge the wave. Shame we didn't capture the moment where Adam got soaked!  It was a great weekend and we hope that we can get together again before too long.

This week should be a better one as far as side effects go but will probably mean GCSF injections to boost Ryan’s neutrophil count and maybe a couple trips to hospital for a blood and/or platelet transfusion.  The only problem is that now Ryan is feeling like doing something and seeing people nearly all of his friends are at school and so he doesn’t really have any one his own age to play with and regretfully I have to say that playing with mum or dad just doesn’t cut it anymore.

Friday, 15 June 2012

The meeting...

Ryan thoroughly enjoyed himself at the circus and sleeping over at his cousin James’ house.  He was understandably a bit tearful at bedtime but was perfectly happy in the morning and snuck into his cousin’s bed to wake him up!  Here is James and the cheeky chappy.

Our trip to Tuebingen was straightforward enough I guess, the only direct flight we could get was from Heathrow (or even worse Stanstead).  Unfortunately there were 2 full flights checking in on just 2 desks and it was a bit chaotic to say the least and so despite arriving with plenty of time to spare by the time we checked in there was only enough time to make a quick dash through to the departure gates.  Then, as people were boarding, an announcement was made asking for 2 volunteers with hand luggage only to fly out the following day as the flight was over booked??!!  Madness really but I am assuming someone volunteered and took the 250 euros compensation and over night stay in a 5 star hotel….

Our hotel was near the airport, in an industrial estate actually and being a Sunday the restaurant had closed 3 minutes prior to our arrival, perfect.  The helpful receptionist did give us directions to an Indian take-away which also did Pizza – so that was tea sorted!

The next morning we arrived at the hospital and, in the way that we had become accustomed for our treatment in Greifswald, we first had to complete registration and then we had to pay for our consultation and then we got to meet with the consultant.  It is during registration that you wished you knew more languages, especially German!  Dr Lang was a very pleasant gentleman but made us no promises of a wonder cure.  He talked us through the treatment, the intended purpose and the risks involved.  It is difficult to describe how you feel during such a meeting.  You almost have to detach yourself from the situation and not think that you are talking about what could happen to your precious child.  The risks, and there are many, include heart, liver and kidney problems, rejection of the donor stem cells and graft versus host disease to name but a few.  But the greatest risk is of infection during the period where Ryan’s bone marrow has been wiped out completely and the period where the new stem cells are grafting in his body, which can take approximately 2 weeks before we begin to see signs of engraftment.  All of these risks can be fatal. 

During this time Ryan will be kept in isolation in the transplant ward of the hospital.  There is an air filter fitted in each room and the ward can only be accessed through a changing room where you must remove your outdoor clothes and shoes and put on clean ones. He will be on numerous anti biotics, anti-virals and anti-fungals all to try and prevent any infection.  Ryan will have a restricted diet for 100 days so that there is no risk of infection through the food that he eats.  Although during this time he will have mucusitus, and so eating will not initially be a concern, it will be managing his pain while we wait for the new cells to graft and repair his body.  He will not be forced to have an ng tube and he will be supported by TPN (IV Nutrition) both of which was our request.  Ryan had an ng tube for 9 months between age 2 and 3 and as he remembers this he has no desire to have one again, so when he can eat he does eat, with a lot of encouragement from me and Gareth! 

Strangely the hospital do not have a policy of having a parent sleep in hospital with the child, we had been warned of this by another family who had already made the trip out, and so we asked about this and made it clear that we would not be leaving Ryan at any point and so would sleep in a chair if necessary.  This did not seem to be a problem and we were told we could sleep at the hospital with Ryan, thank goodness!  After the meeting Gareth and I had blood taken which will be tested to see who  will be Ryan’s donor.  A sample of Ryan’s blood will be sent to the hospital and then we will find out the results.  We also discovered that the stem cells will be taken from us peripherally, which involves being connected to a harvesting machine for many hours with IV lines in both arms – something else to look forward to!  This will be during the period when Ryan is receiving high dose chemotherapy prior to his transplant.  We will also have to have GCSF injections twice a day for 5 days prior to the 2 day procedure! Little price to pay though although I will probably pass out based on my track record!  

Luckily the actual transplant for Ryan is nothing more than a blood transfusion into his central line, usually several small bags of stem cells which look just like blood depending on the number of cells harvested, it does not involve surgery as the name suggests.  Overall the trip was a success and although we both felt rather subdued after the meeting our minds are still made up.  The only problem being that the hospital does not have a bed available in the transplant ward until the 12th August.  This will mean that Ryan will need to continue to have chemotherapy until that time.  This is quite a worry at the moment as his counts are still not recovering from the 2nd cycle and he is now 3 weeks late starting the 3rd cycle.  This is not unexpected in view of the extensive amount of treatment he has had since relapsing in November 2010 and is a sign of how very weak his bone marrow has become.

Ryan will have another count on Monday and we have everything crossed that his counts are sufficient to start.  The type of chemotherapy has been changed to one that is not so toxic to the bone marrow to see if Ryan is able to tolerate this better.

Sunday, 10 June 2012

Ryan has been well the past week despite needing a blood transfusion and regular injections of GCSF to boost his neutrophils.  With it being half term he managed to catch up with some of his friends although the weather limited any outdoor activities.  

Here he is scooting with his cousins Gabriel and Archie:

Later today Gareth and I will be driving to Heathrow so that we can be in Tubingen early tomorrow morning for our meeting with Dr Lang, the consultant in the charge of the facility where they will do the haplo-identical transplant.  We have not been apart from Ryan since he relapsed in November 2010 and so it will be very strange to leave him, Ryan still has mixed feelings about it.  At least it is only the one night but there is more to having Ryan to stay then just an over night bag – we have to explain what to do in an emergency with his central line and how to administer an injection of cortisone should he become unwell and make sure that my sister Jackie has the number of the local hospital!  But our lovely CLIC nurse lives fairly close to Jackie and has given us her personal mobile number and has said that Jackie can get in touch at anytime if she has any concerns about Ryan.  Best to cover all angles that way we know that he will be just fine!

But we have tried to make it as much of an adventure for Ryan as possible and so this afternoon he is going to the Circus, courtesy of CLIC Sargent.  He is going with his auntie Jackie and cousin James and is very excited about it.

Yesterday his cousins from London came to visit which was great and the boys played football for hours! There have been lots of fund raising events taking place this weekend; the little ones sky dive team did their jump, Uncle Paul ran his marathon, Donna Hawkins held a Waxing event (Gareth had to have his chest waxed!), Uncle David and Team did their 50 mile cycle ride, Alex and Ben's fun day and auction in Portsmouth is being held today and the 4 soldiers in Germany from 64 Fuel Sqn’s are currently in the middle of their 24hour event – details of all these events are on the Events page.  Thanks to everyone for all the hard work that has gone into making these events happen.  I hope to update the events page with photo’s from all these events over the next week.

Saturday, 2 June 2012

I meant to say in my last post that we have heard from NB Alliance, the charity that we are fund raising with, and they have confirmed that they have sufficient money in their charity reserves to make the advance payment for Ryan's treatment.  This is a big weight off our minds, as you can imagine.  As we have said it has always been our intention to try and raise the money and this is still our aim so that the Charity can do the same for another family in the future.

Ryan has a busy long weekend planned including a visit to clip and climb with his girlfriend Ella to celebrate her birthday, this is a bit of a risk with his poor immune system but likely to be last time he has the opportunity to do something like this in a long time. He also wants to get out on his motorbike with his mate Jack, which is good timing following a platelet transfusion yesterday, we have a BBQ garden party to go to and hope to get out on the push bikes again too - although it's a bank holiday so it's bound to rain!

This weekend's events that I know about:
Saturday 2nd June: Suzanne Yeo is doing a 15,000ft tandem sky dive at Dunkeswell Airfield, Honiton
Sunday 3rd June: Daniel and Arron are running the Plymouth half marathon
Monday 4th June: Tracy Derges has a stall at the Exminster Village Fete selling cakes, wristbands, cards and great raffle prizes.
Tuesday 5th June: Jackie Chalk has a stall at the Waterfront Jubilee Street Party selling wristbands and raising awareness of Ryan's appeal.

Thank you all so much for giving up your time to raise funds and awareness of Ryan's appeal.

Finally my brother has an event planned next Saturday 9th June: a 50 mile cycle ride from Exeter to Okehampton and back again.  He has made the event open to anyone and everyone, with or without sponsorship, and will set the pace on the slowest riders ability.  But so that he can plan the event and so that they don't leave without you, if you would like to join the team on the ride please contact Dave on 07809 295380 or 01363 82918.  For more details go to http://www.justgiving.com/dave-smith4ryanedwards