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.

Saturday, 28 April 2012

The past week has flown by and we have been really busy with all things fundraising.

Firstly there are now photo’s of the Tennis Event on SteveAshton’s website; you can also find details of the tennis coaching and club sessions that Steve holds and his contact details: http://www.satennis.co.uk/club-gallery/

This past week Gareth has been on Exe FM and Heart FM and we have been on ITV Westcounty Tonight.  I was very nervous about being on TV, my mum has only a handful of photo’s of me during my whole life as I have also dodged the camera so having a massive one pointing at me in my living room was a nerve wracking experience.  But I needn’t have worried as Richard Lawrence from ITV edited the interview into a very nice piece which got our message across and raised awareness of Ryan’s appeal. You can see the website write up and the interview if you missed it here:http://www.itv.com/news/westcountry/story/2012-04-26/child-cancer-victim-campaign/

This week has been a busy one for fundraising events; on Friday there was a  ‘Wear Red for Ryan’ day and many office's, shops and business wore something red to work and made a donation to Ryan’s appeal – it will be some time before all the money is counted and showing on the website but we did make a surprise visit to the Co-op Supermarket in St Thomas Precinct and Ryan had his photo taken with the staff, who were also raffling a food hamper in aid of his appeal.  They raised a total of £226.63, which included donations from customers to the store. We really do appreciate every penny. Bath Travel in the precinct, were my sister Jackie works, also supported the appeal and sold cakes on the day and raised £170.17, and Exeter College had a collection and raised £167.58.  We really cant thank people enough for donating and getting involved.

Here is Ryan with his Auntie and the staff at the co-op

Today there have been two events; the Cake and Coffee morning at Alphington Village Hall arranged by Becky Hill, which raised a massive £1150!! I understand that the hall was packed from the minute it opened until the event finished – it was a huge success.  Thank you to everyone who baked cakes, bought cakes and helped on the day. 

Also today was Daniel Hambly who was having his whole body waxed in aid of Ryan’s Appeal.  I know only too well how painful waxing is, most women do, but for a man to have his WHOLE body waxed is an entirely different ball game!! The pain must have been excruciating!  The event started at around 11am and I think the last strip was pulled off at around 4pm!! His ‘friends’ even sponsored him to have an eyebrow waxed!  The shop also held a raffle.  I will let you know the total raised when themonies have been counted but whatever amount it is we are in awe of Dan for going through with this event.  Garethdid manage to make it along to witness some of Dan’s pain and to take him a video message from Ryan to spur him on.  We are hoping for this event to be covered in the Express and Echo with some photo’s of his ordeal!

Since finishing chemotherapy Ryan has been surprising well, he hasn’t had the anticipated diarrhoea, yet - which is fantastic, he taste buds have changed and his appetite has reduced considerably but he is eating enough to maintain his weight, and his counts have been stable, so far.  He has just started to feel tired which is probably a sign that his counts are about to drop and so he will probably have less energy in the coming week.  That said today he had a birthday party, his good friend Alfie was 5.  We hadn’t told Ryan about the party as we weren’t sure that he would be well enough to go but on Friday we told him that he was going to a Clip and Climb party and he was very excited – Alfie was equally excited when he heard Ryan could come. In his life he has been to so few parties either due to being intreatment or having no immune system and therefore being at risk of infection and so it was not only Ryan that had a great time but it was lovely for Gareth and I to see him doing something fun and being excited with a group of children his own age.  Here is a photo of him inaction.

Finally, we are still waiting to find out in the bone marrow harvest was a success and also the results of the bone marrow trephines but expect to find this out next week. 

Sunday, 22 April 2012

Ryan has now finished the first five days of chemo and, as we were able to have this in Exeter, he has enjoyed seeing all of 'his favourite nurses' - not forgetting his consultants, doctors and everyone else working on the ward who all welcome him back like a member of the family. We are so lucky to have such a good relationship with our hospital, it makes all the difference in the world. He skipped in and out each day.

So far he has tolerated the chemo well with only nausea or sickness first thing in the mornings but has felt quite well by the afternoons. We are hoping that he will not develop diarrhoea next week. His platelets are falling but the rest of his counts are stable. This could be due to the fact that in the last two weeks he has had a stem cell and then bone marrow harvest which would have depleted him of stem cells, it is unlikely to be the effects of the chemo, yet.

During the week Ryan got to see one of his friends that lives close by but was quite sad about everyone being back at school. He got to see the teachers in hospital each day and despite the fact he normally calls learning boring he actually enjoyed doing it. For the next few weeks he should be able to see his tutor a couple times a week too. He has 16 days off treatment but in that time his will counts will drop so he will be neutropenic and needing blood products, they they should slowly recover in time for cycle 2.

We are still awaiting confirmation that the bone marrow harvest collected sufficient stem cells and have been disappointed to find out that the sample of bone marrow sent to Vienna could not be processed as there was a problem with the storing of the sample. We are awaiting results of the bone marrow trephines, which will be another week.

Yesterday we went along to watch his mate Jack playing football and then, as he was feeling well, we went to the Tennis Club event that had been arranged to raise money for Ryan's appeal. We hardly saw Ryan, he ran around playing tennis games with all the other children, and had fun throwing sponges at the victims in the stocks. He had a great time, which was even better as some of his friends were there. Huge thanks to Emma Chant and Steve Ashton for organising the afternoon and to all those that helped at the event, which raised £674 for Ryan's appeal.

Tuesday, 17 April 2012

Ryan started a new regime of chemo yesterday; temozolomide and irrinotecan. This involves Ryan taking 5 capsules of oral chemo, 2 hours after and one hour before food. Then an hour after having the tablets, being connected for just over an hour IV chemo.

We opted to give Ryan an early breakfast, wait a couple hours to give him the chemo tablets and then head into hospital with a packed lunch. Ryan has had no immediate adverse reactions and so far is tolerating the treatment well , but it's still early days.

The most problematic side effect is severe diarrhoea along with the usual side effects of sickness,low blood counts, hair loss. So diarrhoea is something that we are hoping that Ryan won't get, it can occur this week or next and so there is still some time before we will know if he has avoided it. The chemo is given daily for 5 days and then 16 days recovery before the next cycle. He will receive 2 cycles before being re-staged and all of this will be done at our local hospital in Exeter.

Saturday, 14 April 2012

Another long day...

Friday 13th is not a good day to be having a procedure in hospital.  Our day started at 8am when we were asked to arrive at the Children’s Hospital; Ryan needed to be nil by mouth as he was having a general anaesthetic and he was first on the list.  What we hadn’t realised was that he was first on the second list of the day and so at 12.30, a very hungry very bored Ryan got called to theatre.  Luckily he was so hungry that he was actually quite happy to be taken to theatre and kept talking about what he was going to eat when he woke up!

He was as good as gold being put to sleep and chatted happily to the doctors in theatre.  As he was having stem cells collected there was also a team of nurses from the blood bank service and must have been about 10 gowned people in the room but even this didn’t phase him. 

About an hour later we were allowed to see him in recovery, unfortunately and for some unexplained reason, Ryan came around with a cannula in his hand.  There is no need for him to have one as he has a central line in his chest for intravenous drugs but it was there none the less.  This obviously distressed him as we hadn’t prepared him for it.  He also had the sticky pads from the heart rate monitor still stuck to his back, which had metal buttons on and were very uncomfortable.  His throat was so sore and dry from the pipe inserted into his airway that he could hardly speak – this is also very unusual.  So he did not wake up his usual happy self, he was sore and distressed and it didn’t help that we had to wait at least 10 minutes in recovery until a porter was found to wheel his trolley back to the ward.

Once he was back in the ward he slowly came round, the cannula was removed and he had something to drink and eat and gradually started to feel better.  His back, although stiff, was not painful as he had been given plenty of local pain relief.  Unfortunately though a blood count showed that he needed both a blood and platelet transfusion.  As Ryan needs washed blood products they took several hours to prepare and so it wasn’t until 6 o’clock that Ryan was connected to the platelets, immediately followed by the blood.  And so it was after 10pm that we left hospital and took Ryan back to Sam’s house for the night.  Needless to say he is very stiff and sore but was really happy to come home this morning.  We hope to find out early next week if sufficient stem cells were collected.  On a positive note we were really pleased to be learn that Bristol had agreed to send Ryan’s bone marrow aspirates to Vienna for analysis; the trephines will be processed in Bristol – the results of both tests will take about 2 weeks…

Thursday, 12 April 2012

It’s only been a week since my last update but such a lot has happened! I am always conscious of not writing too much but lately it has been very difficult not to – so sorry in advance!

First an update about Ryan – he is well, happy, lively, loud – lovely! You might already know that Ryan has a quadbike, he has had it since he was 2 and riding his quad is something that he does with his friend Jack, who is now 8. Jack got a motorbike last year and has already outgrown it so at Christmas Gareth bought the bike Jack had outgrown for Ryan. This weekend was the first real opportunity that he had to go on it. Ryan couldn’t touch the floor or reach the brakes so obviously I was stressing about it – after all that is a mum’s job – but I needn’t have worried as Ryan was a natural and only fell off when the bike stalled. Here is a link to YouTube if you would like to see them in action:

This week Ryan has caught up with lots of his friends, he has been out on his push bike, playing football in the park, on his bouncy castle, playing the x-box and generally having fun. Tonight we go back to Bristol as Ryan is first on the list for a bone marrow harvest – he will have a general anaesthetic and his bone marrow will be extracted from his pelvis and the stem cells within the bone marrow will be spun off and collected. The reason that this wasn’t performed last week is that you also risk collecting cancer cells and so a peripheral stem cell harvest is the preferred route but when this fails this method is a back up, we are hoping that this will be successful and sufficient cells are collected. At the same time a sample of bone marrow will be taken for analysis, we have requested that this is sent to a laboratory in Vienna, which is where were are sent when Ryan was a patient in Greifswald. We are urgently trying to find out if this is going to be possible. Vienna perform a series of very sophisticated immunological tests of the samples and can detect 1 neuroblastoma cell in 10 million!

Ryan will have a very sore back after this procedure but providing he is happy to we will return home later in the day. He will need a quieter weekend than the last one but hopefully will soon be bouncing around again. On Monday Ryan starts a new regime of chemotherapy but I will go into that more on my next update…

Secondly I can’t finish without mentioning our fundraising; it is going really well and we have had lots of help and support from family and friends, I truly don’t know what we would have done without them.

On back holiday Friday and Saturday M&S gave permission for a bag packing and collection to be done in aid of Ryan’s appeal – lots of our friends and family gave up their spare time to help and a huge total of £1,397.29 was raised. Thank you to everyone that gave so generously and for all the kind messages that were received.

Also at the weekend friends of our took part in a Jet Ski competition in Port Talbot, the original competition was cancelled due to lack of waves but as so many people had booked accommodation an alternative event took place. Debbie and Hannah, whose partners were taking place in the competition, did a collection and thanks to the generosity of all those in attendance a massive £610 was raised. I have added Debbie’s account of the event and a link to some photo’s on my events page.

Jamie Quick, aged 6, raised £75.50 when his family held an Easter Auction in aid of Ryan’s appeal and Sara Smale raised over £200 with a coffee and play morning at Tedburn St Mary. Reggie Greenham also opted for a collection for Ryan instead of presents for his 80th Birthday and raised over £300. Thank you so much to all of you and to everyone that has donated to Ryan’s appeal page and to the pages of the team members. If you hold an event and would like me to include a piece about it on the blog please send me the details by e-mail and will happily share your news.

If you haven’t donated yet but would like to have a look at upcoming events on the events page – one of the next events looking for sponsorship is a full body wax! Daniel Hambly might now be starting to regret volunteering to have his whole body waxed for Ryan – his event takes place on the 28th April and you can visit his page with the following link: http://www.justgiving.com/Victoria-Hambly

If you have time to attend an event here are some dates for your diary; there is a Tennis Fundraiser at Exwick Civil Service Club on 21st April, Wear Red for Ryan days throughout April, a Cake and Coffee morning on 28th April and Zumba for Ryan on 12th May - for full details of these events please see the Events page....

Saturday, 7 April 2012

We're home

After the vascular cathetar was removed we spent the night in hospital (you are supposed to wait 2 hours in case the site of the cathetar starts to bleed again) but we preferred to let Ryan sleep instead of waking him and taking him up to Sam’s House late evening.  The following day at 8.30am Ryan had his final session of radiotherapy; he gave the radiotherapy a Thank You card which he had filled with kisses and he was very proud of it.  The nurses were really lovely and gave him a Lego aeroplane and some other little gifts and told him what a good boy he had been.  Then we came home.  The current plan is for a bone marrow harvest in Bristol next Friday, so we will return Thursday evening, and then to start chemotherapy the following week.  We are going to make the most of every day at home and try and catch up with friends and family whilst everyone has time off school.  We even managed to go to a stunt show yesterday afternoon, which Ryan thoroughly enjoyed.

A few weeks ago Ryan’s Auntie Caz (Gareth’s sister) ran as part of the Olympic Park Run and managed to raise £286.00 for Ryan’s appeal at the same time.  Her account of the event and a big Thank You to everyone that donated to the appeal can be found at the bottom of the events page.

Wednesday, 4 April 2012

Such a long day...

Ryan got back into the routine of radiotherapy with no problem. He is now on the 2nd phase of treatment which means only 2 beams and not 4 so the treatment is even quicker and he can only listen to half of his selected song - usually Scooter belting out at full volume!

We went to the park yesterday and had tea before coming into hospital. We had good and bad news - the good news (as it turned out) was that ward 34 was full but they found us a bed in Ward 37 (Renal) and it was in a cubicle! The bad news was that the special drug that Ryan was being given to mobilise his stem cells into his blood stream needed to be given at 3am and was by injection into his leg. We only learned this on arrival as had previously been told it was IV. What made it worse is that earlier in the day Ryan had asked if he needed any more injections and we had reassured him No, so he was also cross with us thinking we had lied. He said how stupid it is to wake children up at night and and do horrible things to them and why did everything he needed to have done to him have to be so horrible (meaning the vas cath) There is not much you can say to this other than we wished it was happening to us instead but this doesn't really help as he never wishes the same.

Our room wasn't quite ready when we arrived so we spent some time in the playroom and managed to get Ryan asleep by 8pm. We had just been having a conversation about the fact I was concerned that Ryan's platelets were not high enough for surgery and Gareth was pointing out i wasn't a doctor so should stop stressing when a doctor turned up and said they wanted a blood count as they were concerned his platelets weren't high enough for surgery.....

So at 9 ish Ryan was woken up for a blood count! And was examined by a doctor to ensure he was fit for theatre. Later that evening we were told that after radiotherapy at 8am Ryan would have platelets then go to theatre at 8.30am. That was the plan, there was not a minute to spare in fact we had to find an extra ten minutes from somewhere as radiotherapy takes ten minutes and platelets take half hour!

At 2am Gareth who was the choosen one to sleep in, put numbing cream on Ryan's leg covered in cling film - which we adopted in Germany as suggested by Corinna (thank you!) Ryan stirred but went straight back to sleep. At 3am the nurse came in with the injection and Ryan decided that Gareth should give it and the nurse should cover his eyes. He was a bit anxious but managed it without tears, what a star. He was awake about an hour, asked to play the wii - with a grin on his face as he knew the answer was no - then fell back to sleep again.

At 5.45 the nurse came in again to take blood for a stem cell count - although this is the normal procedure we had been told that Ryan would not need this. In fact as we had been told this and knew isnt was unusual we had checked this information directly with his consultant ( that's just what we are like) he confirmed that a count was not required as Ryan was having a special drug to mobilise his stem cells. But Gareth didn't see the point in arguing and Ryan was woken again for a blood count ....

I arrived at 7.15am, the same time that the anaesthetist was in the room explaining the procedure to Gareth. And so Ryan woke up and the first thing he said was what a lovely sleep he had had?!

At 7.30 we suggested that Ryan be given cover (anti-histamine) before radiotherapy so it in his system by the time the platelets were connected. This is what usually happens in Exeter. By the time they found his drug chart it was 7.45, by the time they prepared and checked the drug it was 8.00.

Today was always going to be stressfully, full stop. The importance of a successful harvest is stressful in itself without all the other complications and a surgical procedure.

As the nurse was about to come into our room ( I was loitering in the corridor looking out for her) the phone rang and the blood service wanted to know Ryan's count, as it had been done last night and not this morning they wanted another one! Now!

We got to radiotherapy by 8.10, literally running down the corridors. We looked for the staff who are usually waiting in the control room by the machine and they weren't there. We wandered to the other machine and found all the nurses and 2 engineers. Both machines had failed their daily checks, had faults and were not working! They told us they hoped that at least one would be working in the next 5 minutes! 5 minutes that we already didn't have!! We tried not to show our stress and frustration as this would not help Ryan and quietly explained the situation to the nurses. We all cheered when the engineer declared the machine ok at 8.20!!

At 8.30 we were running back up the corridors to ward 37 for platelets and bumped into the anaesthetist who was going to insert the vas cath, she was lovely and said not to panic, they would be waiting as soon as he was ready.

The ward had the platelets ready when we got back and connected him almost immediately. But then they wanted him to go straight to theatre, whilst having the platelets. Ryan didn't like this idea but it seemed like that's what would be happening. Although it seemed obvious we asked the nurse if theatre staff would flush off the platelets when they were finished and they said yes, of course. (if they are left in the line the line will block)

Ryan got anxious when he was about to go to sleep but the lady doing the anaesthetic had an American accent so Gareth said that was where Travis was from and Ryan asked her if she knew of him. She didn't so as he went to sleep he was telling her all about him.

So we waited in the ward until we were told that Ryan had come around. He was very upset, his leg hurt and he kept saying he didn't want the thing in his leg. We had expected this but had not expected him to still be connected to the platelets. The machine had been turned off but nothing else had been done! The platelets must have finished at least 20 minutes earlier and would be sitting in his line clotting our first thoughts were that his line would almost certainly be blocked. A worry we definitely didn't need at this time and so before Ryan had even been transferred from the stretcher into his bed he was flushed off the platelets and amazingly his line was fine!

He was then carefully moved from the stretcher into bed and once he was settled in a comfortable position, he calmed down. His leg ached and so he was given paracetamol and started playing on the x-box. He had already declared that today was a day that he would be in charge and that he would be eating when HE wanted and playing the x-box and wii all day. He had specifically requested to be visited by his cousin James and our friend Darren as they were both great candidates for a day of computer games. As James wasn't feeling 100% he didn't come but my sister came for a couple hours in the morning and Darren for a couple hours in the afternoon.

The harvest started just before 11am but within half an hour the machine started alarming due to pressures - the flow of blood out of Ryan's body wasn't sufficient. The nurse had to use a syringe to draw off blood and found a clot had formed in the vas cath. She started the machine again but within 10 minutes the same thing happened. Again she had to disconnect the blood supply from Ryan to the machine and use a syringe to withdraw blood. This time a bigger clot came out of the line. This solved the problem and the harvest recommenced but within 20 minutes the same thing happened. This time the clot was too big to get out of the bung attached to the line that she had to remove the bung! However removing the bung and connecting Ryan's line directly to the line into the machine seemed to solve the problem and for the rest of the harvest there were no further problems.

While Ryan was in theatre the nurse had explained to us that the machine is primed with blood so that as Ryan's blood was extracted the blood in the machine was returned to him. As the blood passed through the machine it was mixed with an anticoagulant. The side effects of the anticoagulant were low levels of calcium in the blood which could cause tingling in the lips, nose and/or finger tips, stomach ache and vomiting. She told us that should Ryan experience any of these symptoms she would give him calcium to counteract the side effects. I asked if it were not possible to give the calcium beforehand to prevent symptoms but this is not normally how it's done apparently. She said she would explain the side effects to Ryan and ask him to let her know if he experienced any of them. Once he had settled back into bed she explained all of this too him - he said ' I know, why don't you give me the calcium now so I don't get any of those feelings?' I promised I hadn't primed him to say that!! The nurse obviously liked him and agreed to call her superiors to get permission to give him a preventative dose - and that is what she did. So Ryan felt reasonably well throughout the whole experience. His pulse and temperature were slightly raised but that can sometimes be as a result of a surgical procedure and it didnt escalate.

By 3.30 the final harvest was done and Ryan was disconnected from the machine. Ryan then did his first wee of the day which was difficult as he couldn't bend at the hip because of the siting of the vas cath.

We expected to hear late evening whether or not sufficient cells had been collected and whether the harvest would continue into a second day but by 5.20pm our consultant came to tell us that they had only collected 0.14 (the minimum for a successful harvest was 2.0) He said he did not feel that a second day would achieve the required difference and so had decided to abandon the harvest. This is obviously very disappointing news. However he was going to arrange for a bone marrow harvest (which is where the stem cells are collected directly from the bone marrow in the pelvis by needle aspiration) He hoped to arrange this next week.

This meant that the vascular catheter could be removed. This is done without anaesthetic. The tube was held in Ryan's leg by 2 large stitches and a large plaster. We knew this was not going to be a pleasant experience for Ryan and we hoped to get it done before it was too close to bedtime.

It was just before 7 when the nurses came to remove it, this isn't because they forgot or were putting it off, this is simply how long things take in hospital when nurses have several children to look after. They were fantastic, really reassuring and patient. I kept right out the way on the other side of the room as I hate the sight of blood. Gareth was sat next to him and the 2 nurses persuaded Ryan to let them first remove the plaster. Then they had to remove the stitches and then pull out approx 6 inches of tube from his artery! They had to apply pressure to his groin for about 5 minutes until the site stopped bleeding. There were obviously lots of tears while all this happened, and distressed shouting and pleas to stop. I can't help but feel upset when this kind of thing is happening, I don't let Ryan see any tears but it's hard to hear your child frightened and in pain without feeling upset. In his usual style though Ryan calmed down quickly and watched Tom and Jerry with the nurse until she could remove the pressure pad. He then gave her a picture he had drawn earlier and thanked her for looking after him, bless him, he's such a star.

Sunday, 1 April 2012

A weekend at home

Ryan's blood results last Thursday were really good, in fact his neutrophils were so high that we were told to stop GCSF injections until Saturday. Ryan was very pleased to hear this! As he didn't need any blood products this meant that after radiotherapy on Friday we came home for the weekend. We expected that Ryan would need blood and or platelets on Sunday and so the plan was we would have a count done in Exeter on Saturday.

However when we had the count done his counts again were holding and had not plummeted as expected, Ryan never seems to react as anticipated.

Ryan had his cousin sleepover, caught up with friends and family and generally has had a good weekend. Today he has complained of lower back pain, any pain is always a worry, but this can be a side effect of high dose GCSF. After talking to his consultant we took him in for another blood count today to see what his neutrophils were doing and as they are still high we are hoping that this is the cause of his pain.

Tomorrow morning we return to Bristol for radiotherapy. On Tuesday his blood with be tested to discover the levels of stem cells that have been produced by Ryan's body as it recovers from chemotherapy. A stem cell is essentially a 'blank' cell capable of becoming another type of cell i.e. red blood cell, platelet or white blood cell etc. These cells will be collected from Ryan's blood via a vascular catheter, which is surgically inserted into his groin. His blood will then be extracted, passed through a machine which spins off the stem cells and the remainder of his blood is returned to him.

He will need a general anaesthetic to have the vascular catheter inserted and we are dreading telling him about this. It will greatly restrict his movement, confining him to bed and from what we have been told will be uncomfortable but should not be painful. All in all it will be a awful experience for Ryan but at the same time a successful stem cell harvest is essential to his future treatment. We are looking forward to putting this week behind us.