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.

Thursday, 31 May 2012

The weekend after learning Ryan was in remission was very emitional. We felt elated, and so very very lucky that we were in this position again. But then also very apprehensive about putting him through the haplo-transplant. This doesnt mean we are having doubts. But Ryan has had a transplant before, we know the risks, how poorly he will be and it also commits us to another 9-12 months of hospital treatment, in another country when what we would love to do is take him away on holiday and let him enjoy life. We like to think that we fill every day when he is feeling well with fun things to do but it obviously isn't the same. But we know what we have to do and why we are doing it.

We have arranged to have a consultation with Dr Lang in Tubingen on Monday 11th June. We need to fly from Heathrow the evening before for a morning appointment. It is not mandatory for Ryan to come, and as we never really like to talk about treatment in front of Ryan, we have decided he can have his first sleep over at his cousin's house. He was excited about this but after some thought has decided he will miss us! After all we are never apart from each other so its only natural but hopefully he will enjoy it.

This week Ryan should have started his 3rd cycle of chemo but his blood counts, platelets and neutrophils, were too low. He has continued to need GCSF injections to boost his neutrophils and his platelets today are only 13 so he will be having a transfusion tomorrow.

This morning we were in hospital for a synacthen test. Ryan stopped producing the steroid cortisone as a side effect of dexamethasone. This has meant we need to give him hydrocortisone 3 times a day and carry an injection of cortisone with us at all times in case he become unwell as the body needs cortisone to respond to a crisis situation. In such a situation the pituitary gland in the brain releases a hormone which gives a signal to the adrenal gland to produce cortisone.

Today we didnt give him his morning dose of hydrocortisone but instead went to hospital at 9 o'clock for a special test. Ryan was injected with a synthetic form of the hormone released by the pituitary gland and then blood taken at regular intervals to see if his body could respond appropriately.

We also had a review with Ryan's lead consultant from Bristol and he is going to start the process of applying for funding for treatment, although it is expected it will be declined!

This afternoon Ryan has a review with his tutor and her manager to assess how his home tuition is going. We are really pleased with his progress and despite the fact he only sees his tutor twice a week for one and a half hours, she says he is doing really well. He didnt see her at all for 5 weeks when he had radiotherapy but she says he had remembered everything she had taught him so she could pick up where she left off. I have to be honest though and say that he still thinks learning is boring and would rather be learning stunts!

A bit about our fund raising; THANK YOU, THANK YOU, THANK YOU!! We cant believe that in the last month the fund has increased from £30,000 to just over £60,000! Its just amazing and we are so so thankful to everyone helping us.

I have spent some time updating the events page with all the public or sponsored events I know about and will try and keep it up to date. Thank you to everyone supporting these events. We try and attend any that we can and I'm sorry that we can't make them all but this past weekend we managed to catch up with the Robinson Family Cycle Relay team after they finished their 80 mile relay. I've added some photo's and news of amounts raised at recent events to the events page, please take a look.

Saturday, 26 May 2012

Better news than we could ever have hoped for....

Ryan’s MRI scan is clear, there is no sign of the tumour that had been in his spine encasing his spinal cord.  It has gone.  Gareth and I didn’t dare believe this was true when we heard it on the phone on Thursday evening.  We didn’t allow ourselves to believe this.  There must have been a mistake, it can’t have vanished, they told us it was a possibility but extremely unlikely.  We needed to wait until we met with the consultant, face to face, and saw the images.

But it is true.  Even typing this makes me cry, happy tears though.  We asked if they were sure, really sure, that it has gone.  Yes it was double checked and we were shown the MRI from February and then the MRI from last week.  They are noticeably different. There really is nothing left.  This is truly the best news we have ever had and feels like we have won the lottery. But at the same time I know that we both feel a sadness for the other families that we know that have recently lost their beautiful children to the disease or those that are still fighting, and fighting hard.  We, like them, will never take a day with our child for granted, and will continue to live life day by day, enjoying every single moment.

What does this mean for Ryan?  Well this means that there is now no visible sign of neuroblastoma in his body but the key word is ‘visible’ sign.  This is not a guarantee that there are no individual cells, dormant, waiting.  When Ryan originally received remission he was 2, he had had 3 months of aggressive chemotherapy followed by an 11 hour surgery to remove the remaining tumour from his tummy.  The scans after this were clear as they are now.  He then had high dose chemotherapy, a stem cell transplant (a type of bone marrow transplant where you receive your own cells back) 14 fractions of radiotherapy and 6 months of cis-retonolic acid (similar to oral chemo). Despite all this treatment he went on to relapse at the age of 4, as unfortunately most children with this disease do.  We had been told right at the start of treatment that Ryan’s chance of survival 2 years past diagnosis was 30%.  We have never been under any illusions that this was an easy cancer to beat.

As you know he then endured 6 further cycles of chemo, and MIBG therapy (internal radiation treatment) before going to Greifswald, Germany for immunotherapy.  After the 4th cycle of treatment again his body was again clear of disease but just 3 months later a new tumour had appeared in his spine.  No one saw this coming but when his original scans were examined we were told that the site of the latest tumour had showed signs of disease back in 2008 and so it was likely that cancer cells had remained dormant until this year, when they started to grow again.

Now we have several choices.  This time it is different.  We have never had choices before, not really.  Sorry this is going to be a long one…..

Our first choice is we can do nothing, we can stop treatment.  There is a possibility that the disease has really gone this time, gone for good.  We can try and resume our normal life and wait and see…. This is so very tempting as Ryan, our beautiful only son, has surely been through enough, more than most people would have to experience in a lifetime. But if it comes back again…. If it comes back again it is very unlikely to come back as an isolated tumour, it is more likely to come back with a vengeance in his bones and marrow as it did before.  He would need chemotherapy to take control of the disease but he has now had every type of chemotherapy known to work on the disease.  He would need a strong bone marrow to allow his body to tolerate such treatment, but Ryan does not have a strong bone marrow.  His counts have not been in the normal ranges since November 2010 and it is likely that it will be many years before they would return to normal.  His options would be to try whatever new trial treatments were available at the time, most likely abroad, but you need to meet criteria to join these trials and most need a strong blood count at the start of treatment.

The other options that we have been given are to put Ryan through another bone marrow transplant, originally it was suggested with his own cells but unfortunately we have been unable to collect sufficient stem cells for him to have a second autologous transplant (his own cells returned).
So we could choose to have a matched bone marrow transplant from an unrelated donor.  To minimize potential side effects, this type of transplant would use transplanted stem cells that match Ryan’s own stem cells as closely as possible. ‘People have different sets of proteins, called humanleukocyte-associated (HLA) antigens, on the surface of their cells. The set of proteins, called the HLA type, is identified by a special blood test’.

‘In most cases, the success of allogeneic transplantation depends in part on how well the HLA antigens of the donor’s stem cells match those of the recipient’s stem cells. The higher the number of matching HLA antigens, the greater the chance that the patient’s body will accept the donor’s stem cells. In general, patients are less likely to develop a complication known as graft-versus-host disease (GVHD) if the stem cells of the donor and patient are closely matched’.

But this option is not proven to offer a chance of a cure, this option is what it is, an option based on the knowledge and experience of Ryan’s consultants.  Ryan would have a new immune system, which over time would grow stronger and the hope would be that the cancer would never return.

And then we have the option to go to Tubingen for a Haplo-identical transplant.  In Tubingen, they have a specialist clinic where they have been treating children with neuroblastoma for many years, trying to find a cure.  They use the stem cells from a parent but they are not looking for an exact match.  The idea (in layman’s terms) is that the new cells have an anti-cancer response when infused into the body, they destroy any remaining cells, which is the job that should have been done by Ryan’s own immune system but it is not able to. The flip side to this is that the donor cells also attack healthy cells in Ryan’s body, this is known as Graft Versus Host Disease.  GVHD sometimes develops when white blood cells from the donor (the graft) identify cells in the patient’s body (the host) as foreign and attack them. The most commonly damaged organs are the skin, liver, and intestines. This is a serious condition and if it cannot be controlled can effect quality of life. But in Tubingen they prepare the donor cells in a way to maximise the anti-tumour effect and minimise the GVHD.  GVHD is only one of the many risks associated with this, and other, types of bone marrow transplant.

Our consultants have talked through the options and possibilities with us and are genuinely not able to advise us the option that is best for Ryan.  The ultimate decision lies with us. Our decision is unchanged; we intend to take Ryan to Germany for further treatment.  Again there are no guarantees that this will cure Ryan but there is a chance.  This is the hardest decision we have ever made, but it also feels like the right one.  To do nothing feels wrong and the other options have no evidence to support there success or otherwise.

So we have contacted Tubingen to make an appointment to discuss the treatment further, to ask questions and to understand the risks involved.  At the same time our consultants will do the same and within the next few weeks we should have a timescale for the transplant.

Then to the financial side of things; we are hoping to raise the full amount of money, but it is now looking unlikely that we will raise it in time. The charity that we are fundraising with, The Neuroblastoma Alliance UK has kindly agreed to step in to provide the additional money from its charity reserves if there is enough available when we need it.  However we are committed to continuing our fund raising efforts to try and cover all the costs of Ryan's treatment.  This means when another family comes forward, there will be funds available for the next child that needs help.  The Charity has said that they will confirm whether they can support us early next week.

Thursday, 24 May 2012

A bit about Ryan.....

Ryan is still well; after an enjoyable weekend Ryan has had a fairly good week so far.  On Monday his girl friend Ella was allowed to take the afternoon off school to see Ryan - the two of them had a great time making a den in her back garden and generally had great fun seeing each other.  While we were at Ella's house we had the good news that his MIBG scan was clear but also learnt that his neutrophils were very low (0.4 when the normal range is 1.5-5) This means that Ryan is classed as profoundly neutropenic and has almost no immune system.  His consultant therefore decided that he should start GCSF - this can be given as either a subcutaneous injection (into the skin) or IV (into his central line).  The IV infusion takes 1.5 hours in hospital whereas the injection can be given at home (by his nasty Dad).  We opted for the injection, much to Ryan's upset and so when we got home from Ella's he had to have numbing cream on his leg and then an hour later at 7.15pm Gareth had to give him an injection.  Despite having had 60 injections in Germany, he is only 5 years old and HATES injections. Unfortunately Ryan can remember that GCSF stings a lot when it is injected, the cream only helps with the pain of the needle. He cried as soon as the cream came off and continued to do so, asking why we were trying to ruin his lovely afternoon? He soon calmed down but insisted on being allowed a late night to recover from the trauma of the injection!

Then on Tuesday we had a sitting with a photography studio and had photo's taken of the three of us together.  The studio had offered the sitting via the hospital and we can't wait to see the photo's as we have so few of us all together!  It is a perfect time to have the photo's taken as Ryan is looking well and although he is loosing his hair it is not falling out as fast as we originally thought and so he had a trendy new haircut and is looking really cool.  We also had some new photo's taken with the Express and Echo, as the first photo they had was taken by us when we were at Sam's House in Bristol.  It was very funny when the photographer was here, Ryan had just come back from the photography studio and was under the impression that he was a professional model!  He kept suggesting new poses to the photographer, 'Now I'll get on my trampoline, Now on my scooter, on my bike, with my toys....' It was so funny and in the end he politely had to explain that he had to leave and go to his next job!  The day ended again with an injection - the injection has to be given at a similar time each day but we did manage to bring it forward an hour or so but had to agree to another late night!

Yesterday and today Ryan saw his tutor and she says he is doing really well. He is still a bit reluctant to learn reading and writing because obviously it is 'boring' but she is great at getting him involved and he works well with her - we are very lucky to have her.  He had a blood test this morning to see what effect the 3 days of GCSF had had on his blood counts and were a little disappointed to find out that his neutrophils were only 1.0 and his platelets were only 10! (normal range 150-600).  So platelets were ordered urgently.  Exeter hospital were told they would arrive between 3-4 and so we cancelled his mate Ben coming for tea and instead told a very unhappy Ryan that he had to go to hospital for platelets. He was not impressed.

At 4.15pm we got a call from the ward to tell us that there had been a problem washing the platelets and they had in fact only left Bristol at 3.45..... In brief we ended up going into hospital at 6pm (after yet another injection) and the platelets were connected at 7.45, way past Ryan's bedtime.  He was exhausted and completely over tired by the time we got him home and didnt get to sleep until 9pm :-( It is not looking likely that Ryan's counts will be strong enough for him to start the 3rd cycle of chemo on Monday but a decision will be made on the day.

Tomorrow we have a meeting with his consultants in Exeter and after this will know full details of the scan results and hopefully have an outline of a plan for the coming weeks.


Monday, 21 May 2012

Some news...

We found out today that Ryan's MIBG scan is clear!  This means that there are no neuroblastoma cells taking up the radioactive dye. Unfortunately it doesn't guarantee that there are no neuroblastoma cells in Ryan's body but this is the result that we had hoped and prayed for.  The MRI is not yet reported and without this we do not know the full picture.  Both scans will be reviewed at a tumour board meeting in Bristol on Thursday and so we are hoping to find our more news following this meeting, at the end of the week.  I think it is fair to say that neither Gareth or I can really believe this, maybe we are afraid to believe that it is true after having been in the situation of getting told results of previous scans, in Germany, only to find that the whole truth is a slightly different story.  But on face value this is good news, great news and we hope that by the end of the week, we will know even more.

A bit about our fundraising:

In Portsmouth on the 10th June Alex and Ben Keyte have arranged a family fun day in aid of Ryan's appeal.  They have never met us or Ryan but have been so touched by his story after hearing about him from his Auntie Vicki (Gareth's sister) that they have given up hours of their spare time organising their event.  Alex is Vicki's hairdresser.  I appreciate that most people that read this blog do not live near Portsmouth but in addition to arranging a fun day they are also having an auction.  The items for auction are incredible and there is no reason why anyone needs to miss out as they intend to accept e-mail bids for the items on offer.  Full details of the auction are on the poster and events page but include:

  • Signed Manchester United Football with certificate of authenticity (COA)
  • Signed Steven Gerrard photo with COA
  • Signed Arsenal Team photo with COA
  • Signed Leon Spinks Boxing glove with COA
  • Signed Amir Khan Boxing Gloves with Letter

I have added details of the auction to the events page and also added a poster to the Downloads page in the hope that you might print it and display it at work or anywhere that it would get notice by the right audience.

To read an article about Alex that appeared in the local paper in Portsmouth click here.  Thank You to both of you, Alex and Ben, for everything you are doing to help Ryan.

Sunday, 20 May 2012

No news is no news......

Just a quick update to let you know we have no news about the scans yet. We were told that the MRI wasn't being reviewed until tomorrow at the earliest and the MRI and MIBG scans both have to be reviewed together by a team of doctors and surgeons in Bristol.

But we have done a good job of keeping busy! Ryan is well, yesterday he went on his motorbike again and came off a couple times as he is getting a bit too confident! He is unscathed though thank goodness. Today he cycled for several miles to Exeter quayside where he watched some mountain bike stunts and free-runners - right up his street! He also saw a glimpse of the Olympic flame runner but was very unimpressed!

Tuesday, 15 May 2012

Ryan has tolerated his second cycle of temozolomide and irrinitecan well, so far….  He has felt sick most mornings and has been off his food but has been lucky so far not to have experienced diarrhoea.  There is still time for this to happen but at least at the moment he is doing ok.  His counts are dropping again but on Friday he did not quite qualify for a platelet transfusion.  He finished his chemotherapy on Saturday and we had arranged for him to have his last infusion about an hour earlier than the rest of the week so that we could all attend the Zumba event and luckily it all went to plan and we got there on time.  Ryan managed to find the energy to join in to a couple songs and said he really enjoyed himself.  The event was a big success; almost 100 people came along and in total just over £1000 was raised thanks to the generosity of everyone that attended. 

This weekend was a good weekend for fundraising as the Pig Race was also a great success and £2204 was raised.  It was also a beautiful sunny day for Charlotte and Busters Skydive which I think they both thorough enjoyed.  I will update the events page with some photo’s from these events by the end of the week.

On Sunday we decided to take a chance that Ryan would stay well despite having just finished chemotherapy and having low platelets and drove to London to visit Adam and family, our friends that we met in Germany when both boys were having immunotherapy.  We haven’t been able to see each other since February and since then sadly both boys have had progression.  Adam is an amazing boy, you wouldn’t know that he had literally just returned from a multitude of invasive blood tests in America in preparation for the treatment that his family are considering for him.  Adam has exhausted treatment options available to him in the UK and so will need to travel abroad for treatment, and so meeting this weekend was very important to all of us.  You can follow Adam’s story on his dad’s website http://adamsappeal.blogspot.co.uk/

The boys had a great time running around the house battling as the 'red ninja storm power ranger' and spiderman and playing on the wii and x-box!  They were pretty much inseparable the whole time we were there.  

Then on Monday a reluctant Ryan left London and we drove to Sam’s House in Bristol where we are staying until Wednesday for re-staging scans.  We took Ryan in the Bristol Children’s Hospital for a blood test this morning and we were not surprised to discover that his platelets are only 8!! and his HB is 7.9.  So they have ordering platelets urgently for today but as they take 4 hours to prepare they are unlikely to be ready until 4.30 at the earliest.  So we went back to the hospital at 1pm for a cannula to be inserted and for the radioisotope dye to be injected in preparation for the MIBG scan tomorrow.  And then we go back to the hospital again at 4.30 to wait for the platelets – walking up St Michaels Hill three times in one day is not something that you want to be doing and it doesn’t get any easier!!

We will return home on Wednesday after the scan but need to go via Exeter hospital so that Ryan can be cross matched for a blood transfusion which he can then have on Thursday after an MRI.  The week of re-staging scans is always a very difficult one, you try to put the results out of your mind, you try to behave normally but you also cant help but think about the enormous implications of what the scans show.  We are waiting to find out if the tumour has responded to the radiotherapy, whether it has shrunk; whether it is alive or dead, whether there is any disease anywhere else, whether Ryan will need surgery? We are hoping to find out some initial information on Friday but it going to be some time before a new plan is known.

Thursday, 10 May 2012

This weekend's events

Just a quick update about our fundraising:  Firstly Thank You to everyone that has donated to Ryan's appeal - as of today the appeal stands at £41,500!!  We are blown away by the increase in the last few weeks and really appreciate every single penny.

The sun shone for our Great West Runners; Claire Channing who ran the half marathon and for Gary, Andrew and Alan Hayes who ran the 5K. Between them they raised a total of £677.93.  There is a photo of the Hayes family runners in action on the events page.  There is also an update from Kate and Alice Butler who, with a team of 16 friends and family, raised a massive £1,047 by completing their 9 mile sponsored walk.

Tomorrow night there is a karaoke and sponsored waxing at the Royal Oak at Nadderwater and this weekend there is Zumba for Ryan.  All abilities are welcome, don't worry if you haven't done Zumba before - now is your chance to give it a try.  Registration for the event is from 1.30 at Walter Daw School, Woodwater Road.

Also on Saturday is the Pig Racing at the Jubilee Club at Pinhoe - the first race starts at 8pm.  Full details of all these events can be found on the events page.  There are lots of new events listed and lots more sponsored events on the justgiving team page - Thank you to everyone who is organising a sponsored event for Ryan, we really do appreciate it.

Good Luck to Charlotte and Buster who are doing their sky dive for Ryan this weekend. They have smashed their target of £1,000 and have so far raised a total of £1,454 between the two of them.

Tuesday, 8 May 2012

Ryan temperature didn't come to anything luckily, his infection markers in his blood were very slightly raised which did not indicate an infection so most likely to have been a virus. His cough is getting better and apart from being a bit tired he seems ok.

In his usual style Ryan didn't admit to being tired and still wanted to go out on his motorbike, so yesterday afternoon he met up with Jack in a wet muddy field. Both boys found the conditions harder than last time but still had fun.

His blood counts didn't fall much more and today his neutrophils were 1.5 and so he has started his second cycle of chemotherapy. Fingers crossed he tolerates it as well as last time.

Saturday, 5 May 2012

A spell in hospital

Ryan developed a cough earlier in the week which was half expected as the radiotherapy had touched the top part of his lung and could have happened much sooner. However as usual it is difficult to know the exact cause of the cough as there are so many germs around. As the week went on the cough got worse and as Ryan's blood counts started to drop he seemed to be brewing a temperature. Overnight on Thursday his temperature hoovered just under 38 so I packed a bag and set my alarm to check it every hour and in the morning it hit the magic number 38.1. We were due in hospital anyway for platelets but went in early. Ryan had blood cultures taken from his line but when his temperature was checked it was 37.7 and so he wasn't started on antibiotics but they wanted too monitor him as his pulse was high 140-150bpm. After lunch the consultant came to review him, had a mandatory play on the wii with Ryan and said we could go home.

However at 4pm when we were packed and getting picked up his cheeks were glowing again so I checked his temperature and is was 38.3. He was therefore admitted to hospital and started on IV antibiotics. Which means a minimum of 48 hour stay in hospital. He was upset at the time, as he was meant to be seeing his mate Adam and family this weekend, but we have assured him, and Adam, that we will get together as soon as possible.

In himself he is tired but ok, we have his beloved wii and he is re-discovering his games as he has been playing the x-box at home lately. (he does have a half hour time limit at home though!) His chest sounds tight and congested and he has a bit of a snuffy nose but if his temperature stays down he can come home Sunday night. He cheered up when his good friend Josh came to visit and the two of them were soon laughing and joking and playing games on the wii.

He is due to start chemo Monday but it has been delayed to Tuesday due to the bank holiday. But if his blood counts don't recover it will be delayed until he is not neutropenic (neutropenic means you have no means of fighting infection as your white blood count is low)

Ryan is hoping for a speedy recovery as he is hoping for another go on his motorbike on Monday apparently!

Thursday, 3 May 2012

Just heard.....

...Ryan's bone marrow trephines are clear!  To say that this is a relief is a huge understatement!  Re-staging scans are being arranged for mid-May.  I have added a Treatment Update page to the blog and will try and keep this up to date with details of Ryan's treatment and the plan for the months ahead - when we know it.
Just a couple things to tell you about fund raising events :

Dan's full body wax is now on YouTube!  If you want to share his pain click here.  It brought tears to my eyes and not just because of the pain but because Dan did this for Ryan :-)

You can find this link again and a write up by Vicky, Dan's wife, on the events page.  Dan is so close to hitting his target of £2,500 and is sure to do so after the event is seen in today's Echo - to view the article on-line click here.

Wear Red for Ryan day has so far raised over £1,100 but money is still coming in.  Money has also been added to Ryan's main justgiving page and I have been sent some great photo's which I will be adding to the bottom on the Events page.

There are updates on several of the events that have taken place on the Events page.  I have also added a link to Gareth's YouTube channel on the right on the screen.

Finally Good Luck to Gary, Andrew and Alan Hayes and Claire Channing who are all running the 5K Great West Run for Ryan on Sunday 6th May.