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, 3 May 2014

Another update seems over due so I will try and update you on the happenings of the last 6 weeks:

On the 17th March Ryan had a day in hospital for venesection, immunoglobulin and bone marrow aspirates and trephines.  It was a rubbish day for Ryan, but as usual the hospital team let him make decisions as to how he wanted things to happen and so Ryan opted for a cannula in hand for the IV administration of the general anaesthetic and infusion (he hates the mask induction) and he knew that when he woke up he would also have a larger cannula in his arm for the venesection (as previous attempts to take sufficient blood from a cannula in his hand had failed miserably) and would have a plaster on his back covering the place where bone marrow had been taken.

Just come round and already eating!
He was very brave, he did have lots of tears, when the first cannula when in and because the cannula in his arm needed a lot of fiddling with to get to work, which was very painful but eventually it worked and 160ml of Ryan's blood was taken to try and reduce his iron overload and afterwards Ryan told his consultant that he 'was the best doctor, ever!' The cannula in his arm was then removed and Ryan had a 3 hour infusion of immunoglobulin in the cannula in his hand.

The blood taken was used for a multitude of tests and we had some really good results.  His iron overload is continuing to reduce, his immune system has finally recovered to the extent that most of his t-cells are within the normal range, albeit at the bottom of the range but still big progress.  This meant that we were able to stop his anti-viral medicine that he had 3 times a day which is fantastic.

After a week we also got the good news that his bone marrow samples were completely clear of disease, no cancerous cells were detected.  The relief you feel when you get these results is hard to explain, its almost like you have been holding your breath without knowing and you can take a big deep breath again.

Ryan has been attending school on a tuesday, wednesday and thursday with his tutor and has continued to work with a small group of children from his class.  He goes into school for 2 hours each time and we are hoping to slowly increase this and finally integrate him into his class now that his immune system is recovering.  He will still be vulnerable to infection, a bit like a new born baby, but at least now he will have the means to fight infection.  And so next week will be the first time that Ryan joins his classmates. He is a feeling a bit nervous about this, he is much more used to the company of adults then children, but I know he will enjoy it.

He had a great half-term seeing lots of friends and enjoying the lovely weather.  It is still wonderful to just be at home and be able to enjoy the garden.  I get satisfaction from such simple things like hanging out the washing in my own garden and we finally have had time to sort out all the toys he has out grown - we took loads into the hospital for the playroom.

And before we knew it, 6 weeks had passed and it was time for another visit to hospital for venesection and immunoglobulin.  This time, Monday just gone, Ryan had the cannula placed in his arm while he was awake, again he did have lots of tears at the time it went in but soon recovered.

While his blood was being processed to see if he needed immunoglobulin (to support his recovering immune system) he had a favour to do for his consultant, who was teaching a group of medical students on the 'science of chemotherapy'.  Ryan was asked if he would come and talk to the students about chemotherapy from a child's point of view, his consultant said that Ryan was the most qualified person he knew to do this.  Ryan agreed and so with cannula in arm, we went to the medical school where a room full of about 30 medical students were waiting.  I'm not sure that they were expecting a 7 year old boy, but after being introduced by Ryan's consultant and hearing a brief summary of Ryan's extensive medical history, which is not easy listening for anyone, they were encouraged to ask questions about what chemotherapy is actually like.  Ryan was a bit nervous but with a bit of prompting from Gareth and I he explained about getting a sore mouth, feeling sick, being sick, food tasting like cardboard and loosing your hair, several times.  He also explained how he enjoyed playing the Wii with other children while they were also in hospital having chemotherapy because it helps you forget what medicine you are having.  Then we left the consultant to talk about the scientific bit and waited back at the ward.

The venesection went well, the cannula worked beautifully and another 160ml of blood was taken.  It turned out that Ryan needed immunoglobulin, his numbers are still not quite high enough, but unfortunately due to a delay at the lab it took hours to come and we didn't get home until 9pm.

And then later this week Ryan had an MIBG scan at Bristol Childrens Hospital, as they don't do this scan for children at Exeter hospital.  Unfortunately this meant a second cannula in a week as a radioactive dye is injected into Ryan.  The dye is absorbed by any cancerous cells and are then visible on a scan the following day.  Unfortunately the cannula wouldn't go in on the first attempt.  To say Ryan was distressed was an understatement, it really hurt and had to be removed and inserted into his other hand.  And then when the dye was being injected that really hurt too, which can sometimes happen if the the end of the cannula is resting on the inside of the vein apparently as it is 'an irritant' but as soon as it was done the cannula was removed.

Ryan and Ann at CLIC House
And so then we took Ryan to the cinema to try and make up for such a rubbish morning, the cinema was practically empty, just 10 people including us and Ryan really enjoyed it, his second trip to the cinema ever.

This time as Sam's House was full we stayed in CLIC House, another CLIC Sargent House near the Children's Hospital.  We haven't stayed at this house for years and Ryan didn't remember it really but some of the staff are still there and it was lovely to catch up with them and for them to see Ryan all grown up.  We came home yesterday after the scan and now await the results.  I hate waiting for results more than anything, it doesnt seem to ever get any easier but in the meantime we are enjoying 'normality' and hope that long may it last.


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