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, 29 March 2012

Ryan has continued to cope well this week, he is off his usual food a bit as the chemo causing changes to his taste buds and things don't taste quite right but he is feeling hungry because of the steroids so it's hard to find him food he likes - he is wanting all the things we don't give him, typically!

On Tuesday we went out for tea with his new friend Beck as it was Beck's birthday which was a real treat for Ryan and the boys had a great time.

Ryan's blood counts haven't dropped as yet and but we are having them checked again today as they are expected too. He has had 2 of 8 injections of GCSF and as it is a high dose it is 0.7ml which looks quite a lot in the syringe and stings a LOT when it goes in so there are unfortunately lots of tears but not for too long.

Yesterday we found a new park and so Ryan was able to enjoy a bit of the lovely weather -here is in on the rather high rope bridge!

Tuesday, 27 March 2012

Ryan started to feel better as the day went on on Sunday, we decided against coming home and had a quiet morning but he even felt like a bit of scooting by the river in the afternoon. Yesterday Ryan was pleased to see his Nanny and Grandad and also pleased to see a little boy who was staying at the house for a few days so he can be with his mum and dad on his 6th birthday, which is today. His sister is having a bone marrow transplant and a couple weeks ago he was admitted to hospital to donate his bone marrow to her - what an amazing gift, and a brave boy.

Today Ryan starts GCSF which should encourage his bone marrow to start to recover. This is normally given as an injection and as Ryan got used to having injections in Germany we are hoping that he will tolerate these injections without too much upset, although his reaction to this news was understandably not great. In the past we have requested that this is given IV which means a 2 hour visit to hospital but the injection is something that we could give him at Sam's house and gives him more time out of hospital which we feel is the better option.

Saturday, 24 March 2012

We are back at Sam's House, the house provided by CLIC Sargent. The chemo went on at 6pm until 9pm yesterday and fluids and a drug to protect his bladder from the chemotherapy ran for 24 hours until 6pm tonight. Ryan had a terrible sleep mainly due to the noise and lights in the hospital bay. He slept this morning for a couple hours and had been feeling quite well until 4pm when he started being sick. He has been sick 4-5 times so far and so we are hoping that he will not have a disturbed night tonight. Tomorrow we will just have a quiet day and hope that he wakes up feeling better.

We would really like to say a huge thank you to everyone who has donated to Ryan's appeal, we can't believe it has already reached almost £11,000 although we realise there is a long way to go it is still a very significant amount in a relatively short time. Thank you too to everyone who is giving up their spare time to help raise awareness of Ryan's appeal, we really appreciate it.

Friday, 23 March 2012

Back in the bay

We arrived in hospital at 10am as requested, 5 hours later at 3pm Ryan was started on 3 hours of pre-hydration and chemo will start at 6pm. First chemo not on ward, then his notes weren't on ward, then drugs not written up - so frustrating.

We had originally hoped to spend the afternoon at home tomorrow but that idea is no longer going to happen. We could drive home and back on Sunday but we will wait and see how Ryan is feeling before suggesting it to him.

Thursday, 22 March 2012

Ryan has continued to cope well with radiotherapy. We have been to the zoo and a farm park and he has had a good few days. Tomorrow morning after radiotherapy he will be admitted to hospital for 24 hours of chemotherapy. This is being given to prime Ryan's bone marrow in preparation for the bone marrow harvest which is scheduled for the 4th and 5th April. Ryan has asked if his hair will fall out again, we told him we don't know and all he said was 'oh great!'

Wednesday, 21 March 2012

Week 2 of radiotherapy

Ryan was understandably a bit reluctant to come back to Bristol, although going home was lovely it was almost too 'normal' and so for Ryan he was almost surprised to remember he had more treatment. He was very good though and didn't make a fuss about the treatment. He was greeted by the nurses with a sticker chart, each day he adds a sticker and he can see how many more sessions he has to left.

Today we hope to find out when he is being admitted for chemotherapy, it will be Friday, Saturday or Sunday and will mean a 24 hour stay in hospital. Here he is being super brave, the mask covers his head and shoulders and is bolted to the table during radiotherapy.

Sunday, 18 March 2012

Home for the weekend

There were no tears for radiotherapy on Friday and afterwards we left Bristol and drove home for the weekend. Ryan is feeling well and strangely has lots of energy, if you didn't know him you wouldn't have any clue he was poorly. He has seen some friends and enjoyed playing on his new x-box - which is his reward for laying still during treatment. Tomorrow we drive back to start week two of radiotherapy.

Thursday, 15 March 2012

Today radiotherapy was again at 8am, and by 8.10 he was dressed and it was all done. There were no tears for the treatment, only for the MRSA swab they wanted to take from Ryan's nose.

We have been told that radiotherapy can cause the tumour to swell and although this is a good sign in that the treatment is working we cannot afford for Ryan's tumour to swell because of its position. So on Monday Ryan was started on steroids to counteract any swelling. He also started a daily tablet to protect his stomach as the steroids can cause stomach ulcers. So far we haven't seen any sign of mood swings so fingers crossed. There is little chance of him gaining weight because although he's eating well he can't stay still for long and is literally sprinting up and down the corridors at Sam's House.

Wednesday, 14 March 2012

1st day of treatment

This morning at 8am Ryan had his first session of radiotherapy. He had a few tears at the time of fitting the mask but not as many as yesterday. It takes about 10 minutes to set up the machine once Ryan is locked in position but the actual treatment only takes about 3-4 minutes. Once it was finished Ryan got dressed and raced us to the lift!

This afternoon we took Ryan into town to get a charger for his x-box controllers, the x-box being his reward for being such a big boy and lying still for radiotherapy. While we were there we were able to take him on a big wheel, it was 60 metres high and he loved it. Here he is at the top...

Tuesday, 13 March 2012

Back at Sams House

Ryan seems to be quite at home in Sam's House (a home provided by Clic Sargent). We have been given a self contained flat which is on the ground floor. It was designed to enable children who have an infection following a bone marrow transplant to leave hospital without the risk of the infection spreading throughout the rest of the house. We have made it clear that should such a circumstance arise we will happily move into another room within the house where we would have the use if a communal kitchen. For the time being though we are extremely grateful of such a lovely room. Over the years we have donated things to the house, such as Ryan's cot - which had belonged to his cousins Freddie and Lily. It is still here and has been used loads and still referred to as Ryan's cot. We also donated a small chair and footstool and Ryan was delighted to see it in our room!

He was such a brave boy this morning, he did have a few tears and needed quite a bit of coaxing to get onto the table but eventually he co-operated, his mask was fitted and the required measurements and photos were taken.

He then wanted to visit Day Beds and Ward 34 to see 'his nurses'. They were obviously delighted to see him and said how well he looked and it was sad having to tell them the reason for our return. We did a bit of shopping then returned to Sams House for the rest of the day. We will have full details of the immediate treatment tomorrow but do know that Ryan will not be having chemotherapy this week which means we can come home this weekend.

Monday, 12 March 2012

Yesterday we spent the morning at crealy with some more of Ryan's friends, we stayed outside to reduce the chance of him getting an infection but he had a great time on all the rides, the go-karts and the bridges over the stream. It was hard saying goodbye not knowing when we could see his friends again but we hope and pray it isn't going to be too long.

Today we are packing and go to Bristol later. We are assume for 4 weeks but hope to get home in between treatments if Ryan is well enough. We still don't have a firm plan but we know radiotherapy 'verification' is tomorrow and treatment starts Wednesday. We will keep you updated.

Saturday, 10 March 2012

After the trauma of last week we wanted to make sure that Ryan had a good weekend before starting radiotherapy treatment next week.  Today he went to his first ever football match to see his mate Jack, who plays for Moors Youth, under 8's.  He loved it and was shouting from the side lines with the rest of the supporters.  He particularly enjoyed having a kick about with boys at half time, playing in a football team is something he has always wanted to do.