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, 24 December 2012

Merry Christmas

Its been lovely being home, bit manic due to time of year but we knew it would be like that. Its weird too as everything feels like its in the wrong place after being away so long.

We travel back to Germany on the 1st January and hope to stop off and see Adam and family providing he feels well enough. Adam arrived home  from America on Thursday as his latest scans were stable. It will be lovely if the boys can meet up. Jamie is making progress but is still fighting pneumonia and will he spending Christmas in ICU. We really hope he feels well enough to open his presents. 

We would like to wish everyone that follows Ryan's journal a very Happy Christmas and thank everyone who has helped with our fundraising.  We truly dont know what we would do without your support. Thank you for caring about Ryan and taking him into your hearts. 


Friday, 21 December 2012

There's no place like home


Apologies for taking so long to tell you officially that WE ARE HOME! We found out on Monday morning after a blood count that we could leave that day! I can honestly say that I felt sick waiting for the blood results as so much depended on them that day and there was much to do before we could leave.

We got told we could go home at about 10.30 but wanted to say goodbye to Jamie's parents and Ryan also wanted to say goodbye to 'his nurses' in the BMT unit.  (Jamie has started to do really well since we left which is just wonderful news) Then we packed the remainder of our things and got into the car.  Most of the snow had melted by Monday but apart from a bit of heavy rain and traffic through Antwerp the journey was hassle free and was door to door in 12-13 hours.  I seriously don't know what we would do without our iPhones! In the car I was able to book the Eurotunnel and then arrange a Tesco shop for the next morning.  

Unfortunately I hadn't envisaged our fridge freezer deciding to pack up!  The food arrived and we managed to cram most of it into the old fridge freezer in the garage!  You don't realise how often you go to the fridge until you have to put your shoes on and leave the house to get to it!  The new fridge freezer arrived yesterday but typically had faulty/missing parts and so a second new one is coming today.  We have already been into hospital for a platelet transfusion - which turned out to be great timing as we got to meet Neil Clark from Exeter Chiefs who has chosen Ryan as one his nominated charities in his testimonial year.  The Chiefs had been visiting the hospital distributing gifts to the children in hospital. Ryan really enjoyed being back in Bramble and seeing his nurses, he really does feel quite at home there, which is great.  

Ryan is loving being at home, he understands that he can't see many friends but he can see a couple.  Most of all though it is just great to be at home.  The tree is up and there are already a couple presents under it and Ryan is one happy excited boy.

Monday, 10 December 2012

Christmas


Christmas, although it should be a magical time, always tends to add another anxiety to our lives.  Christmas is a time when families are together, a time to catch up with friends, to relax and enjoy some downtime.  Since Ryan was diagnosed in July 2008, for us Christmas just adds another pressure - to ensure that Ryan feels the magic of Christmas no matter where we are.  He deserves that so much.  

Christmas 2008 was spent in isolation in the bone marrow transplant unit of Bristol Children's Hospital, Ryan had grade 4 musucitus and was on morphine.  He woke in the morning to presents at the foot of his bed but at the end of the day most of them were still there. Christmas 2010 was spent in our local hospital again Ryan had mucusitus, this time after the first cycle of TVD.  Again Father Christmas found him and he opened all his presents but it wasn't the same as the previous year when he had been at home and ran downstairs, flung open the door to the lounge to find all his presents under the tree.  The look on his face that year was priceless.  

Christmas 2011 was spent in our apartment in Griefswald, we have fond memories of that Christmas and, despite being on a portable pump of anti-body ch14.18, Ryan felt 'ok' despite fevers and several other side effects of anti-body treatment.  The week before Christmas we had spent time with our friends Chloe and Nicola visiting the christmas fair, Ryan and Chloe had a great time.  We had a tree and opened presents; we visited our friends Family Bird, who were also having treatment out there.  We had the traditional christmas dinner, we had a good christmas but we weren't at home.

Since Ryan's own t-cells emerged we have been living day to day; Ryan can still reject the transplant at any time but he hasn't, yet.  At present he is receiving T-cell therapy (regular infusions of my T-cells) and is needing to be supported by blood products and GCSF and it has been this way for about 8 weeks.  This week we have allowed ourselves to think about Christmas and start to make some loose plans.  We have started to look for an apartment here in Tübingen but we have also asked the consultant here what is the possibility of Ryan returning to the UK, just for the Christmas period. He gave it some thought and said he had no objections, providing Ryan remains stable since receiving the higher infusion of my t-cells and we have agreed that we will wait and see what happens this week and then make a decision at the start of next week.

So that is where we are, we have a plan either way and will make sure Christmas is a happy one no matter where it is.

Friday, 7 December 2012

Update on Ryan

Not much has changed with Ryan's situation of late which is why I haven't specifically mentioned it.  His counts remain poor but he has not rejected the transplant, but his body is still trying to.  He is needing GCSF (which forces his body to produce neutrophils to fight infection) every 3rd day and is needing platelets about once a week, we are heading towards another blood transfusion too as today his count was 7.7.  Blood seems to be lasting about 3 weeks.  All in all he is relatively stable at rock bottom! However he feels well and is still eating and drinking well.  He actually weighs more than he has every weighed which is unbelievable considering he has a transplant just 3 months ago.

It has been snowing in Tübingen the past few days and the city is covered in a blanket of snow.  We built a huge snowman in the garden of the parents house yesterday and as the snow has continued to fall all day today Ryan has persuaded Gareth to buy him a toboggan with a steering wheel so that he can go tobogganing and cause me even more stress!!

Our little friend Jamie has remained stable the past 48 hours which has been good news, we know that he is still very poorly but stable is good and gives his body chance to fight the virus that was the initial cause of his problems.  We did have some other good news this week, Marco, a teenage who had his transplant on the same day as Ryan and who failed to graft has finally gone home after almost 3 months in hospital! The anonymous donor agreed to give a second donation of stem cells which grafted and essentially saved his life.  It takes a very special person to give such a gift to someone that they have never met, and I think that one day the family will be able to thank them in person if both parties are willing to meet.

Tuesday, 4 December 2012


I haven't felt much like writing an update lately as there is a lot of sadness here at the moment and I can't write about how we are without mentioning it.  I feel like I am constantly distracted with thoughts of the other children that we have become so close to in the 3 months that we have lived here.

Our little friend Jamie's condition has deteriorated and he is now critically ill in intensive care.   The encephalitis (inflammation in the brain believed to be caused by the virus) has effected the part of the brain that controls breathing and temperature.  There is such a fine balance getting the numerous medications right and trying to balance the benefits against it's toxic side effects.  He is currently heavily sedated and getting help with breathing. He is in our thoughts constantly and we are hoping and praying for a full recovery.

Yesterday we also said goodbye to a Bosnian family who have been living here at the house for over 2 years.  The mum doesn't speak English and speaks very little German and so speaking was always quite challenging for us both but she was always smiling.  We were shocked to find out a couple weeks ago that there was nothing more that could be done for her 11 year old son Faris. They  were living at the parents house here in Tübingen as the nearest hospital to their home in Bosnia was 100 miles away.  Faris passed away peacefully at the house on Friday with his Mum and Dad.  Saying goodbye to them yesterday as they left without their beloved son was truly heartbreaking.

And yet another family we have become friends with at the house, Kirsten and Tobias, have had devastating news this past week and we are hoping that they soon get a plan for treatment.

And then there is my wonderful son Ryan.  He is my little ray of sunshine through all this emotional upset and totally oblivious to all that is going on around him.  Gareth's mum, aka Nana Bob, arrived on Friday and we have had a lovely few days with her, finding snow, spending time at the apartment she rented and showing her beautiful Tübingen.  Ryan has had a great week really after the highlight of seeing Travis Pastrana but it was back to reality yesterday with a visit to day clinic.  His blood count was as expected (or should I say there were no surprises which is what we hope for) 

Last week we had a brief conversation with Prof Lang, the consultant in charge of Ryan, and he said that he had expected to see something happen, one way of the other by now.  He described Ryan's own T-cells as a ticking time bomb and said he was considering doubling the next infusion of my T-cells to 100,000.  Infusing T-Cells always comes with a risk of Graft Versus Host Disease (GVHD) where the donor cells attack Ryan's body.  To date there has been no evidence of GVHD and so he felt it safe to consider a higher amount of t-cells.  Before this is done though further tests will be done to ensure that the chimerism still shows that Ryan's blood originates from the grafted stem cells and that only the T-cells are Ryan's. In himself, as you have seen from the photo's, Ryan is feeling good.  He has come back to earth after meeting his hero Travis and it's back to reality with clinic appointments, and a possible platelet transfusion tomorrow.