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.  

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.

Monday, 29 October 2012

It's not good news

Today's clinic appointment did not bring good news. Ryan's counts have all dropped significantly. His WBC is now only 0.5 when only a week ago it was 4.79, his neutrophils are 0.2 and HB and platelets have also dropped. Not the news we wanted but what we were trying to prepare ourselves for.

Gareth had a series of tests and examinations today, along with 24 phials of blood taken to check he is fit and healthy enough to be the donor. He will get the results tomorrow and I think he is pleased that he can finally help although didnt want these to be the circumstances.

Plan B as it stands at present is to admit Ryan to the transplant unit on monday to begin re-conditioning. This will involve a regime of chemotherapy and radiotherapy to his lymph glands, the latter targeting his t-cells. Ryan having to have more treatment is what upsets me the most, i cant even begin to put into words how i feel. I think part of how i feel is due to the fact that it was my stem cells that havent done the job that was intended, I know I am not to blame but still cant help that feeling of utter disappointment.

However Plan B will not commence until everyone is certain that the T-cells infused on the 17th have had opportunity to establish themselves and so a blood test to determine the origin of Ryan's t-cells will be done on Friday and urgently on Monday. The results usually take 5 days but I believe they will be expedited.

In himself Ryan remains well, still an x-box addict but we managed to steal him away from it on sunday and took him to the mountains to visit a castle where there was loads of snow! We had a tour and saw the armoury and the crown of the Prince of Prussia and Ryan seemed to find it interesting. After clinic today we went to a park and fed the ducks - always a favourite and Ryan scooted around the lake oblivious to everything going on. Exactly as it should be.

Friday, 26 October 2012

The waiting game continues...

Ryan counts have responded to GCSF and so have not dropped further. Nothing can be read into this, but it does mean there is still a glimmer of hope. In the meantime plans are being made for gareth to be the donor but we will not be using the frozen stem cells in the interim period. Assuming he continues to reject the stem cells Ryan will start re-conditioning on 6th nov but the full details of what treatment he needs cannot be decided until nearer the time, it depends on the level of bone marrow function, if any. So the waiting game continues and next blood count is monday.

In the meantime plans are in place for Gareth to undergo the necessary tests for him to be the donor, starting with blood tests on Monday....

Thursday, 25 October 2012

Our worst fear.....

We had another clinic appointment yesterday and it's not good news. All Ryan's counts have dropped again. The doctors say there is now only a slim chance that Ryan will not reject the stem cells. This had always been our biggest fear. 


The reason for this is that somehow some of Ryan's own T-cell survived the conditioning treatment and are essentially attacking the bone marrow that originated from the new stem cells, and are destroying it.  The centre here in Tübingen have been doing haplo-identical bone marrow transplants for over 15 years and we had been told that for other cancers the host rejects the donor stem cells in 10% of cases.  However they have been doing haplo-transplantation for neuroblastoma for over 2 years and have not have a rejection for the 30+ children that have so far had the treatment.  Why oh why does Ryan have to be the exception the rule again!?! 

The doctors and consultants here need time to get together and discuss the best plan for Ryan.Yesterday they gave him GCSF to try and force the new stem cells to reproduce.  The T-cells that were infused last week will not be effective until next week at the earliest, the hope was that they would be stronger than Ryan's T-cells and be able to destroy them before they destroy the new bone marrow. However now there is only a very small chance that the new bone marrow will survive long enough for my T-cells to establish themselves enough to destroy Ryan's, it is only a tiny glimmer of hope.


However there are options, and the doctors say there are good options.  One option would be that Ryan be given back his own cells however although Ryan has a back up of his own cells but they were collected when he had 20% contamination with neuroblastoma cells and so we never want to use these. He also has a small number of his own stem cells that were collected when his marrow was clear. These are not enough for a successful transplant but may give him some bone marrow function.  This option would only be used should the powers that be decide that they want Ryan to go through the conditioning again and then for Gareth to be the donor.  The other option would be that Ryan is re-transplanted with my stem cells.  He would need immunological conditioning to destroy his surviving T-cells and should not need chemotherapy.  But at the moment this is all just hypothetical as the decision will not be ours. But we will ensure that we understand fully the reasons behind any plan that is made.  We may get a plan tomorrow but it may be early next week.
We are obviously devastated, and very shocked by this news.  I swing from feeling really upset to really pissed off.  The thought of putting Ryan through more treatment when he already had more than 99% people would have in a lifetime breaks my heart, it really does. But we have to choice as he without a functioning bone marrow he cannot survive.  
Ryan is totally oblivious to all this stress, he is happy and active, eating, drinking and sleeping well and he looks great.  He is the heaviest he has ever been and is really enjoying his food, although still only really wanting my home made spag bol most nights! The likely hood is that he will very soon have to be admitted back into the bone marrow transplant ward and so we have tried to explain to Ryan that his body is fighting mummy's new stem cells and that the bad news is that his body is winning.  We have told him the doctors will have a plan but that he will need to go back into isolation.  His first concern was would he need to have a wash every day? and his next was that he had better not have a small room like he did the first time!  
Anyway onwards and upwards! What other choice is there, sitting in a corner and crying isnt going to help Ryan one bit and wont do me any good either so after we heard this devastating news yesterday I went food shopping, just like I had planned to do before I found out.  It did take a little longer than usual as I kept forgetting what I was looking for but hey.
I promised to try and upload the video of him screaming all the way down the roller coaster and here it is for your enjoyment but best not have a cup of tea in your hand as you might spill it laughing!

Tuesday, 23 October 2012

Playing the waiting game....


I hate waiting, thoughts of what might happen are sometimes hard to keep at bay.  But we have been keeping as busy as we can and making the most of Ryan feeling well while the sun is shining.

After clinic on Friday we came back to the parent’s house and there were some children playing at the house, 2 girls which were sisters of children that were having treatment.  Ryan didn’t waste any time and didn’t need the usual encouragement to join in.  He ran outside and didn’t stop playing for a good couple hours, scooting, playing football and running around the house and garden.  It really was great to see him being so active, the most active that he had been in absolutely ages.

Saturday though he woke up complaining that his leg hurt when he walked, my stomach always turns when he complains of pain.  But realistically he had used his muscles more the day before than he had in weeks and so we tried to encourage him to try and walk properly when he needed to but he spent all the morning playing x-box on-line with friends and sure enough his leg improved (and I could breath again).


On Sunday any aches and pains from the day before had gone and the sun was shining so we told Ryan we were going out for the day.  Gareth had been looking on the internet for something to do and had found that the second longest dry toboggan run in Europe was within 2 hours drive.  This is the website www.hasenhorn-rodelbahn.de if you are ever in this area! It really was worth the drive just to see Todtnau, the beautiful village that it was in.  The toboggan or coaster was set on the side of a mountain, we caught a chair lift to the top and the views on the way up were spectacular. If you can zoom in on the photo you will see Gareth and Ryan.

Then the coaster took you back to the bottom – 2.9km of railed tracked to be precise and Ryan screamed all the way the first time down.  It took about 4 minutes even going ‘flat out’!  Gareth and Ryan were together with me trying to keep up behind, it was great fun.  Gareth videoed the ride and we will try and upload it to YouTube – but be warned there is lots of screaming, Ryan did enjoy it although he does sound a bit terrified at times!  He loved the second time more I think when he knew what to expect.

                                

Then yesterday it was back to reality and a clinic appointment at 9.30a.m.  Ryan blood counts have all dropped.  Not plummeted, just dropped.  They are allowed to drop, they usually peak and trough apparently but the question is are Ryan’s dropping because of the situation that he is in or are they behaving normally and dipping before they pick up again?  No one can answer this question today – we have to wait until we get the next blood results on Wednesday……..

Vanessa is back at the house today with her mum and dad as she has scans and tests this week to see if she can start the next phase of treatment.  Ryan didn’t get to meet Vanessa in person as he was in isolation when she was at the house and was unusually shy when he saw her yesterday morning but soon got over that and has already introduced her to the joys of minecraft!


Wednesday, 17 October 2012

I spoke too soon

After writing yesterday's update we had some unexpected bad news, which has been confirmed today.

The dynamic of Ryan's t-cells have changed so that the majority are now his. This is a concern as his t-cells could be capable of causing his body to reject the new stem cells. However usually when the majority of t-cells are the host's the normal blood counts are low and not stable but Ryan's counts are still all great. So at present he is an exception to the rule but this may change.

The doctors are concerned but not panicking, they have seen this before but cannot predict the outcome or how long it will take to try suppress Ryans T-cells.

Yesterday the steroid and immune suppressant drugs were stopped to 'take the brake off' the new cells. Today Ryan was given an infusion of my t-cells which were frozen in the lab. (I wasn't even aware there were any frozen!) This will be repeated again every 2-4 weeks to try get control again. The flip side of this is that being off the steroid could trigger the fevers to return and the new T-cell activity could trigger Graft Versus Host disease. We will be monitoring him very closely.

This will delay immunotherapy and our return home but we can deal with both of these things.

We are in the best place to deal with this situation. Probably one of the best places in the world. We trust the doctors and know that they will be closely monitoring Ryan. But equally they respect us and dont hide anything from us.

We are obviously very concerned but will deal with this day by day and not assume the worse. There is a plan b, if plan b is needed.

Ryan is looking really great and i think is feeling less tired. Today he was a little upset that Jamie was going home, albeit only for about 10 days, and he wanted to know when he could go home too. So this afternoon we had to tell him we couldn't go home as soon as we thought, in fact we didnt know when we could go. We expected him to be upset or even kick off but instead he simply said 'That's fine, dont worry, after all there's nothing stopping people coming to see me is there!' We had to explain about school etc but you have to love his attitude. His spirit really does keep me going.

Tuesday, 16 October 2012

There really isnt so much to report at the moment - which is usually a good sign.  Ryan seems to be  gradually getting stronger and willing to do a bit more outside of the parents house.  I have realised that one of the reasons that he doesnt like to go out is that he doesnt like to wear his mask.  It has to be said that people stare.  I am sure they are wondering why he wears it and whether he is contagious!  It actually suits us that people move away when he is playing outside so we just smile at them.

Ryan continues to attend Day Clinic twice a week to be reviewed by a doctor, have his weight checked and routine blood tests.  This week the plan is to try and reduce the steroid that was prescribed to stop his high temperatures.  It was originally 20mg twice a day and this week we are down to 7.5mg twice a day so it's a case of monitoring his temperature to see what happens.  If his temperature goes above 38.0 we have to take him into hospital so that bloods can be taken and he can be seen by a doctor - as annoying as this is to us it is not safe to assume that a rise in temperature is purely down to the reduction in steroid as Ryan is obviously very susceptible to infection at the moment.  We discussed this with the doctor and he said that providing his blood tests did not show any infection and his infection/inflammation marker was not raised then we could simply increase the steroid and try to reduce it again the following week.

Since the last update we have taken Ryan to a dry toboggan run for half an hour - he had great fun zooming down the run screaming to his Dad to go faster and 'don't brake!' - good to see that he hasn't lost his davedevil streak!  He even had a go with me and said 'Mum you weren't as fast as Dad but you did great' - high praise for me then!


Then the following day, as the sun was shining (and the wifi was down at the parents house), we drove down towards Lake Constance, in Switzerland but as Ryan was suitably unimpressed with the enormous lake we didnt drive into Switzerland but luckily found a wildlife park with children's play areas and Gareth and I were both pleasantly surprised to see Ryan leap out of the buggy and head for the trampoline.  It was a lovely afternoon and we packed a lot into a couple hours.

















Friday, 12 October 2012

Yesterday's clinic appointment went well, all of Ryan's bloods are good and he has started to produce T-cells, an essential part of his new immune system. We feel so lucky that things are moving in the right direction, and I really do mean that, there is always someone dealing with something worse and that is very much the case at the moment.

Mia, a little girl we see at the parents house who also has neuroblastoma, had her planned surgery 3 days ago to remove the residual tumour but after the operation a blockage in an artery cause her heart to stop. She was immediately opened up again so the surgeons could massage her heart while they looked for the blockage. This happened twice. This kind of news is devastating, she was always running around and was doing really well. Now her mum is waiting to hear if she will make it. When I woke in the night I thought of her straight away and said a prayer.

We also know that a teenage boy who had his transplant, from a matched donor, on the same day as Ryan is still waiting for his counts to increase to repair his ulcerated mouth and stomach and stop the attack of shingles that has reactivated.

Then there is the little girl in the isolation room next to Ryan's. She had a haplo transplant the week before Ryan but failed to graft and so she was given her own stem cells back and is still waiting for her own cells to graft. And a little boy from Ireland who I saw photo's of sitting in the pilot's seat on his flight to the USA to start immunotherapy but due to complications was immediately rushed to intensive care where he is stable but fighting his hardest fight ever.

So much awful, sad news which I cannot help but be effected by. We protect Ryan from this news and smile and joke like things are normal but right now lots of good news would be nice to hear.

Tuesday, 9 October 2012

Ryan has been discharged from hospital

Since my last update lots has happened but mostly good things; mainly Ryan being discharged just 19 days after having his transplant, which meant a hospital stay of 31 days.  Even as I write this I can't really believe that it is true, it is totally amazing, he is totally amazing.  He walked out of the hospital back to the car while I walked behind with the empty buggy!

I wont bore you with the details of our stay on Station 14 - the oncology ward.  It was stressful, with poor Ryan having to wear his mask all day, and was not how we envisaged his stay in hospital would end but we have to be thankful that Ryan only needed to be there a few day while he was weaned off morphine and the IV drugs were changed to oral ones.  At least we were fortunate enough to be able to take him back to the parents house in the evening before returning to hospital early the next morning.  Luckily the little boy that we shared the room with in the day was lovely and they understood our concerns and reasons for not wanting Ryan to share a room.  The two boys got on well despite the language barrier and both enjoyed watching Tom and Jerry DVD's.  On Sunday he was discharged to the parents house after a review with the doctor in charge of the ward.  The doctor said that Ryan has done amazingly well and was in very good shape, he just needed to start eating.

Ryan has been very happy back at the parents house, the first thing that we had to do was set up the x-box of course but he has happily prized himself away to play with Jamie who is a couple weeks ahead of Ryan and also now doing really well.  Both boys love Power Rangers so run around the ground floor of the house fighting invisible baddies - it really is great to see them having fun together.

Yesterday Ryan had to attend his first appointment at the Day Clinic where he is seen by more new doctors and nurses.  His blood results were all good and for those interested his counts are now: WBC 3.42, HB 10.8, Platelets 234 and CRP 0.6! All of which are fantastic.  We have to attend clinic twice a week and so now have 2 whole hospital free days which feels fantastic.

In himself Ryan is happy and feels well BUT is noticeably tired after short bursts of energy.  This is obviously to be expected but hard to convey.  He does run around, go on his scooter etc but then needs to rest which is something that Ryan finds very hard to do!  Over the next week or so, as he gets stronger we hope to take him out to see a little bit of the local area but at the moment it is more important that we focus on eating, drinking and medications.  He has to drink a minimum of 600ml each day, ideally 1 litre, as some of the anti-biotics, anti-fungal, anti-viral and anti-rejection drugs are toxic to the kidneys but he is managing this and is also eating 3, albeit small, meals a day.  Each day he has 9 medicines to take, most of them he has to take morning and evening!  I'm surprised he has any appetite with that lot sitting in his stomach.  All in all he is doing amazingly well and we can't be more proud of him than we are today.





Thursday, 4 October 2012

Sorry it's a long one ........

The past couple days have been very mixed; Ryan continues to do well in that his mouth and throat are healing and his morphine is being reduced, his counts are good, his CRP has started to reduce but his fevers are persisting and when they come Ryan is a difference boy, shivering, tired and feels very unwell. We took him to the parents house the day before yesterday and he had a bit of a kick about and went on his scooter a bit but then asked to go inside and sure enough his fever was returning.

The doctors believed the fevers were either engraftment syndrome but lasting longer than normal, an auto immune response or possibly an infection.

So to ensure they know what they are dealing with the consultant in charge of Ryan requested a CT scan to rule out any infection in his lungs, this was carried out on Tuesday. It was quite a stressful day.

Yesterday morning we were told the good news that the CT scan was clear and that they had done many tests on blood, urine and stool samples to rule out infection of any kind. All tests were negative, this was a huge relief.

And so the doctor said they felt sure that Ryan fevers were caused by prolonged engraftment syndrome, his body reacting to the new cells. The plan was to give Ryan a steroid to suppress his response they felt sure this would stop the fevers.

Then came the news that as he was doing so well in all other respects, and they had a new admission coming in, Ryan would be moved to the oncology ward.....later that day, yesterday. We asked if he would be in his own room and this was confirmed.

We started packing up the room and had almost finished when the doctor came back to say that unfortunately there was no longer a single room and that Ryan would have to share with another child. I think we felt so shocked that we initially accepted this news, as we understand the pressures on doctor and nurses and knew it wasn't the doctors fault. He assured us the child had no infections and was having chemotherapy.

Gareth and I went to see the room without Ryan to see how much room we had for our things. The room had been lived in by the other family for a while and so things were everywhere, after all they must have only just been told too. The realisation hit us that we were moving from a room where we had to strip ryan from his outdoor clothes as soon as he returned to his room to exposing him to 3 other people (child and parents) and their belongings. Gareth took some of our things back to the parents house and whilst he was away from the hospital had time to think about what we were being asked to do.

I felt very uncomfortable but felt we had no choice. Gareth decided we did have a choice, we would simply refuse to move unless it was to a single room. And so after many lengthy conversations, with nurses and doctors who were called in from home, ryan was transferred to his own room in the oncology ward, just for the night. In the morning he would have to move into the room with the other child. We accepted this as in the day Ryan can wear his 'industrial' looking mask that we were told he has to wear everywhere that he is in the company of others, with the exception of close family and friends that know how important it is to be well.

And so today we are sharing a room with Marco and his mum, Ryan is wearing his mask and being really good about it. There is no single room tonight so part of the negotiating that Gareth did was to ensure that whatever needed to happen to get Ryan back to the parents house tonight happened.

The conditions are Ryan must take the majority of drugs orally, must demonstrate he is eating albeit small amounts and must drink a minimum of 600ml as some of the medications are toxic to the kidneys. He is also withdrawing from morphine which can sometimes be a slow process and depends how the individual feels.

In addition his blood results had to be good. Luckily they were better than good - his platelets are in the normal range for the first time in over a year! His WBC is stable at 2400, his HB has increased but most importantly his CRP ( infection marker) has dropped meaning that 2 of the 4 iv antibiotics can stop.

And so the plan is that we can leave the hospital tonight at 9pm and Ryan can sleep with us at the parents house, mask free, and return to hospital tomorrow for 8am. We will have to wake him during the night to give him medicines but he understands and doesnt mind.

This time tomorrow we may be one step closer to being discharged to the parents house.......

Monday, 1 October 2012

Day +13


He got out and here is the photo to prove it:

He actually enjoyed the hour and I cannot begin to explain the happiness I felt watching him walk out the transplant unit. There is still a long way to go, he still has a fever, CRP and is on morphine and many other iv drugs but this hour was a momentous achievement. But I know Gareth felt the same. When Ryan left isolation following his autoglous bone marrow transplant transplant at the age of 2 he cried in pain when he tried to bear his weight as he had been in bed so long. With our help he managed to walk the 30 paces from isolation to non-isolation before getting back into bed. It was heart breaking. This time though he wanted to walk, we visited the small play areas within the empty hospital (it was deserted as it was a sunday) and then ventured outside to the slide and basket swing. He did need the buggy on the way back to the room but it was still amazing to see him.

He was as good as gold coming back into the room. We had to remove the clothes he had worn outside, wash him and get him reconnected to his iv machines.

His temperature is persisting and with only paracetamol it isnt going below 38.0 so this morning, he is very tired. The consultants here have never known anyone be allergic to novageen and as it is so effective against fever they wanted to be 100% sure that Ryan was reacting to it. So this morning when his fever reached 39.1 they wanted to give him a half dose of novageen and monitor him, with anti-histamine at the ready. Ryan was not impressed and told the nurse they were really mean making him get hives.....  Sure enough within 5 minutes he started coughing, went pink and got hives! But even with a half dose his fever reduced to 38.2!

Today, without the help of GCSF, his WBC is 4,740 and so today he has 2 hours of freedom. His CRP has also increased but we are told this happens during engraftment but as his temperature is persisting unfortunately also means he will change to 4th line iv anti-biotics until the CRP is less than 1 (today it has increased to 3.0 or 30 as it reported in the UK)

He has to wear a mask everywhere except for in our room at the parents house, the car or in his room in isolation and will need to do so until Day +100 but so far isn't complaining. His 'clean diet' has to continue for the same period.

Sunday, 30 September 2012

Day +12

Well yesterday had been going really well and then late afternoon Ryan spiked a temperature, he was given novageen (a medicine very effective with fevers and pain that he had a lot during immunotherapy) and unfortunately he reacted by going red and getting hives again. So now we know that it wasn't the antibiotic that he reacted to a couple days ago but the novageen. This has never happened before apparently but means that Ryan can now only have paracetamol for a fever.  They do not use neurofen as it has an impact on platelets.  The fever persisted over night reaching 39.2 but Ryan mostly slept through the hourly observations.

This morning when he woke his termperature was normal. His blood count showed his WBC was 4850 and so the doctor reminded Ryan that he could escape for an hour later in the day.  No real reaction from him this time!

Unfortunatley though later this morning Ryan started shivering and spiked another fever of 38.5 and at the same time the remainder of his blood results were available showing that his CRP (infection marker) had increased from 30 to 150.  And so the doctor had to talk to the consultant to see whether they needed to treat this as an infection and change his anti-biotics and not let him leave for the hour.

The consultant said that if his temperature reduced with paracetamol and didn't return this afternoon then the anti-biotics would not be changed (he is currently on 3 third line anti-biotics) and he could go out. At the time of writing his temperature is 37.9 and he is in bed under the duvet so if we do go anywhere it will only be a brief walk around the hospital but at least it a change of scenery after almost 4 weeks in isolation

I also know that some of you would like to know how the 2 other English children are doing and I'm sure they won't mind me telling you:

Vanessa Riddle was a record breaker seeing her first WBC on day +6 and being discharged on Day +14! Her counts have stayed strong, she looks fantastic and has been feeling well until getting a slight cold in the last day or so.  She has been attending a day clinic twice a week for the last two weeks and providing her counts tomorrow are still good she will be flying to Scotland on Thursday for approximately 2 weeks before the start of her immunotherapy treatment. Vanessa has become a twitter celebrity and has 32.5K followers! You can follow her story at http://vanessasjourney.com/
Jamie Inglis has also done well, his counts started to show at the same sort of time as Ryan's and have also stayed strong. Unfortunately though Jamie's mouth, and tongue in particular, was damaged by mucusitis making it very hard for him to eat anything.  He was moved from isolation to an oncology ward last week as the only thing keeping him in hospital was eating and drinking.  He has been getting out most days to the parents house and has been happy and active and has slowly been able to eat again and is now hopeful of being discharged to the day clinic tomorrow.  You can follow his story at http://www.keepjamiesmiling.com/


Friday, 28 September 2012

Day +10

This morning Ryan woke with a sore throat again. Today instead of increasing his background morphine we requested a bolus to give him extra pain relief for a few hours until he has managed to drink and lubricate his throat. Once that kicked in we got busy decorating the room for Gareth's birthday.

Ryan bought Gareth a remote control helicopter which he is looking forward to flying around the room later today. But Gareth got the best birthday present he could wish for when the doctor announced Ryan's white blood count had increased from 250 to 1,710 (0.25 to 1.71)! Happy 40th Gareth xx

The doctor also said 'If your count stays above 1,000 for two more days Ryan you can go out for an hour'. Ryan replied 'Thanks but i'm not sure I can be bothered, it's too much hassle!' She did laugh! The trouble is he knows that coming back and being reconnected to all the machines is no fun but we will talk him round as the fresh air will do him good, even if he does have to wear a mask!

Thursday, 27 September 2012

Day +9

Ryan woke up again with a sore throat and mouth despite the morphine having been increased yesterday and so this morning the morphine has been increased again.  It is still considered a relatively low dose but has really helped and he is much more chatty today, although still very tired.   Although he has been in pain his condition has been better than we expected, as he has still been able to swallow and talk.

We had good news today that Ryan's white blood cells have started to appear and, with the help of IV GCSF, should increase over the next few days; today they are 250 (or 0.250 as they are reported in the UK)

It will take days for the new cells to repair the mucous membrane of Ryan's mouth, throat and intestine.  As a result of the chemotherapy the top layers of skin havent been able to renew, some areas are worse than others and obviously we can only see the damage in his mouth but this gives us some idea of the pain he is experiencing and the reason that morphine is needed. There are patches in Ryan's mouth that are white and wrinkled and then that layer of skin will come away and a red raw patch will be exposed until the new skin grows.  This is part of the normal healing process but usually the most painful part.  This is what will happen throughout Ryan's body, the top layer will come away and then the raw skin will heal - so unfortunately the pain usually gets worse before it gets better.  This healing and inflammation of the raw skin causes temperatures and an increase in the infection markers (CRP) within the blood meaning that Ryan will continue on IV antibiotics until his temperature and CRP are within normal ranges.

Ryan is also experiencing back pain which is a result of the GCSF stimulating the new stem cells and although uncomfortable is also a good sign.

And so today is a good day.

Wednesday, 26 September 2012

Day +8

Yesterday was much the same as the past few days.  But this morning Ryan woke up and wasn't his usual chatty self. He eventually admitted his throat hurt and once the morphine was increased he started to feel better.

The doctor reviewed his blood results and said that the first signs of engraftment were showing.  He told us that he expected to see an increase in white blood cells in the next day or two but at the sametime we should expect Ryan to develop a fever as the cells cause inflammation around the body as part of a healing/cleansing process.  Although this is expected and a good sign it can also cause problems such as fluid in the lungs and the fever has to be treated as a potential infection and so anti-biotics will be given.

And so this afternoon Ryan spiked a fever and was started in anti-biotics. Unfortunatelt he reacted to the antibiotics by itching all over and getting hives!  He was given anti-histamine and this settled down quite quickly but this has probably been his worst day so far.

Having said that he has managed to have a quick x-box game on-line with his mate Adam who has literally just walked back in the door from treatment in America!  And at the same time he was having his laser therapy!  

Monday, 24 September 2012

Day +6

There hasn't been much change since my last update - Ryan's pain in his mouth and throat is no worse and still controlled by a continuous low dose of iv morphine, his temperature is hovering between 37.5 and 38.0, his counts are rock bottom but he is doing ok.  He is drinking but not eating as his throat hurts when he is eating and his tummy is very upset from all the anti-biotics. He has been a bit more tearful the past couple days and is very bored of the hospital routine of disinfecting strip wash and moisturise, bloods, new lines, laser therapy, blood products, constant iv medication, blood pressures, electrodes, SAT's monitoring.  We really can't blame him, it is monotonous but for us that is a good thing - we don't want any drama, we are happy with plodding along in this critical period while we wait for his new stem cells to graft.  Still it isn't easy to explain that to a 6 year old who can't comprehend how pleased we are that he is coping so very well.

Having said that last night his pulse was high and his blood pressure was low while he was sleeping and so a doctor was called to check him over.  His blood pressure was taken every 15 minutes from 8pm until 1am when things seemed to settle down and then the monitoring reduced to 2 hourly.  Luckily Ryan was totally oblivious to all of this and had a reasonable sleep.

The doctor looked over his blood results today and said they were perfect but there are no new cells as at this morning, it is still early days but that doesnt stop us wishing for them to appear....

Saturday, 22 September 2012

Day +4

As predicted by the doctor Ryan spiked a temperature in the night and has been started on new anti-biotics.

This morning he says he's ok and is quite cheerful. The low dose morphine is controlling the pain in his throat. He hasnt wanted to eat but is drinking.

You will notice that Ryan always seems to be wearing the same thing in the photo's. Well I brought lots of different t-shirts and comfy joggers to wear in the day and PJ's for night time but there is a constant draught from the air conditioning system that keeps the room pressured and so Ryan wants to wear his long sleeve PJ's all day too. He has a set of 3 that are very similar and are his favourite things to wear and so he wears them all the time :-) This photo took 10 attempts as in the 9 others his eyes were still looking at minecraft!

Friday, 21 September 2012

Day +3

Ryan had another reasonable night but woke at 5.30 and couldnt get back to sleep. He is still having fluids all night which are very necessary and although less than they were are still causing a disturbed night.

He has said his throat is sore this morning when eating breakfast and so he will probably start on a continuous infusion of low dose morphine later today as the pain will get progressively worse until the new stem cells graft. In himself he is still happy to see his teacher and play x-box but is noticeably tireder these past few days.

A couple days ago we started a laser therapy which is being trialled and is hoped to reduce the effects of mucusitis. It involves a laser being shone onto the effected area, cheek or neck, while Ryan is sitting in a chair watching power rangers. It is supposed to stimulate the blood circulation in these areas and slow the mucusitis. It has been used for 2 years in a hospital in Stuttgart with some promising results but not for long here. As there are no side effects and its painless Ryan agreed to give it a try. It's ten minutes each area twice a day, although so far we have only managed it once as Ryan's mornings are quite busy with the washing routine, breakfast, physio and his teacher but we are trying to rearrange it so we can do it twice.

Unfortunately I felt like I had a cold coming yesterday afternoon and during the evening was sure I had something so left hospital early. Although I feel ok and 'it's just a cold' and i'm not coughing or sneezing I am going to stay away today to ensure i dont pass anything on to anyone, especially Ryan. I hate being away from him but would hate it more if he caught a cold from me. Im hoping a day of doing nothing and a good nights sleep will sort me out and I'll be fine tomorrow!