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, 26 July 2012

It seems about time to do another update but there isnt too much to say or at least that is what I am thinking as I start to type...

Ryan did start his fourth cycle of chemotherapy on the 16th July, after a family trip to the dentist.  Like the last cycle on the first day Ryan had two chemotherapy drugs: vincristine and temozolomide and then Tues - Fri temozolomide on it's own.  This time we gave him more anti-sickness and woke him in the night to give him a dose so that he was still covered by the medicine when he woke up.  This definitely worked better and he was able to eat breakfast which he hadn't managed the last cycle, in fact he ate quite normally most of the week.  His friend Ella came into hospital with us on one of the days and chemotherapy certainly passed quicker in the company of a good friend.

At the end of the week he needed a platelets transfusion and on the sunday morning he had a blood transfusion and then we took him straight to a summer party that had been arranged for all the oncology children from our local hospital by the charity Richard's Wish.  The charity had been so thoughtful and had planned lots of craft tables for the children to make things, there was a punch and judy show and children's entertainer who also did a magic act. They had a tombolla and hoopla and made sure that every child got a present. They even arranged a photographer to do a family photo of each family that they then gave us as a gift.  On the way home in the car Ryan said it was his 'best day ever'!  He really has missed out on parties and so it really was a wonderful feeling seeing him running around having fun - where he gets his energy from after a week of chemotherapy I have no idea!

Then this week we managed to spend a day at the beach with friends and family, including our family from America, which was lovely and Ryan didnt sit down the whole time apart from to eat his packed lunch! This week he is having GCSF injections every other day to try and force his body to produce neutrophils and the injections seems to be doing their job as today his counts were good. But the hot weather, although we dont like to complain after all the rain, really is too hot for Ryan and he is having to stay out of the sun - somewhere in between would be really nice - please!

Over the next few weeks Ryan will have to have a series of tests and investigations: he has already had a dental check up and an echocardiogram to ensure his heart function is normal going into transplant, he will have an ultrasound of his abdomen, a CT scan of his chest, a full body MRI and an MIBG scan.  He will also have a hearing test, bone marrow aspirates and trephines taken, nasal aspirates, 24 hour urine collection and analysis of his poo for bacteria/viruses.  All these tests have been requested by Germany and are quite normal for anyone who is undergoing a bone marrow transplant.  The high doses of chemotherarpy used to prepare Ryan's body for the transplant can cause side effects to many of his major organs and so the doctors need to be sure that Ryan's body is fit enough to endure the treatment.  Ryan doesnt get upset with any of these tests, he doesnt even seem to mind having a 'special sleep and a back test' as he calls it.

On a lighter note we are also planning a birthday party for him with a small number of his friends to give him something to look forward to and to ensure that his birthday is celebrated in style.  It will be several weeks early so that any risk of infection close to the transplant are limited as much as possible but Ryan doesnt seem to mind this too much as long as he still gets present on his actual birthday too.  We travel to Germany the day after his 6th Birthday, which is the 2nd September.

Saturday, 14 July 2012

Ryan has been well since the last update – he has seen his cousins and three more of his friends have been able to take time off school which has been lovely.  Last week he got to have an afternoon at Crealy Adventure Park with his girlfriend Ella, he went again with Ben last weekend and again this week with his cousins Gabe and Archie – we were really lucky with the weather and there is loads to do there outside which is where we prefer to play.  He loves it there and hadn’t been for a couple months prior to this.  He also went to Clip and Climb again, this time with Ben, and seems to be faster than ever at getting to the top! And then his friend Josh came over for the afternoon.  He is lucky to have so many good friends and they have brought him lots of smiles.

The decision to change his chemotherapy had the desired effect and his blood count has been the most stable it has been in months and he hasn’t needed as many GCSF injections – in fact his neutrophils rocketed to 16 following an injection in the second week after chemo, which is 3 times the normal upper limit! He also hasn’t had platelets for 2 weeks this Monday coming and although they are falling and currently only 29 this is still the best they have been too.  Lets just hope it has also done it’s job as far as mopping up any stray cancer cells.

Since the last update we have also learned that the date of Ryan’s transplant in Tuebingen has been delayed until the 4th September.  This was obviously a huge disappointment, but completely out of our hands.  The unit can only accommodate 8 transplant patients at a time and so only when one is discharged can another be accepted.  The 2 other English families that are going out for treatment also had their dates changed.  It is highly likely that this date will change again, either brought forward or delayed.

Ryan’s blood has not yet been taken for matching but it has been confirmed that Gareth will be the donor as our blood tests showed that I have anti-bodies to a specific virus in my blood and that causes a big threat to Ryan during transplant.  In healthy adults the virus can cause few, if any, symptoms but tends to reactivate intermittently, again without symptoms but for Ryan the symptoms could be life threatening.

So how did Ryan take the news that Gareth was to be the donor? – he cried – with happiness and gave me a massive hug and said he really didn’t want me to have the needles in my arms or any injections.  Then he looked at Gareth and said ‘But you’ll be fine Dad’  Bless!  Obviously I would do anything for Ryan, anything but I am a big woos with needles and have to admit I did feel a little relieved.

Next week Ryan has to have another cycle of horrid chemotherapy.  His hair is almost gone now, not that any of his friends have batted an eyelid when they have seen him.  He has managed to maintain his weight and so we are hoping that he tolerates this next cycle similarly the last one.

Wednesday, 4 July 2012

Last week was quite quiet for several reasons, most of Ryan's friends being at school, the awful weather and partly due to the fact that Ryan was tired after a week of chemotherapy.  Although he refuses to give in to tiredness, we can tell he is not himself.  His tutor came as usual for 2 sessions and our friend Clare kindly asked for permission for his friend Alfie to have time off school to see Ryan as he was missing seeing his friends. And so on Thursday afternoon Ryan, Alfie and his younger brother Wilf had a trip to the Living Coasts in Torquay to see the penguins and seals but mainly the boys just had a good time in each others company and ran around the place mucking about.

Then at the weekend Ryan had a real treat as he was invited to visit Exeter Airport and see the Red Arrows! Ryan and Gareth went along and even got to see the pilot and got up close to the jet. Ryan asked lots of questions and came home the proud owner of a goodie bag with a signed poster.

Here he is with Red Four, Flight Lieutenant James McMillan.

Last week and this week Ryan has needed GCSF injections on and off to force his body to produce neutrophils, and this week has also needed both a platelet and blood transfusion, which he really needed as his HB was quite low and so he feels better today. He also had a 'Ben transfusion' as seeing his friend Ben seemed to have the same impact as a bag of blood and he was running out of the house to the park for a game of football! Tomorrow his girlfriend Ella is also leaving school a couple hours early to spend the afternoon with Ryan at Crealy which he is really looking forward to.

Although the school holidays are coming up and it will mean he can see more of his friends it also means that Ryan isn't able to go to as many places as they are full of children and although he would love that, the increased risk of infection at a time when his immune system is almost non-existent means that he can only really see them at their house, or at home. It also wont be long before we are off to Germany and so he wont be able to see any of his friends for several months - this is going to be very hard on Ryan as he is such a sociable boy and so we are cramming as much as possible into the remaining time that he has at home.