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!

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.

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.

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.

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!

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.