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.

Sunday, 30 September 2012

Day +12

Well yesterday had been going really well and then late afternoon Ryan spiked a temperature, he was given novageen (a medicine very effective with fevers and pain that he had a lot during immunotherapy) and unfortunately he reacted by going red and getting hives again. So now we know that it wasn't the antibiotic that he reacted to a couple days ago but the novageen. This has never happened before apparently but means that Ryan can now only have paracetamol for a fever.  They do not use neurofen as it has an impact on platelets.  The fever persisted over night reaching 39.2 but Ryan mostly slept through the hourly observations.

This morning when he woke his termperature was normal. His blood count showed his WBC was 4850 and so the doctor reminded Ryan that he could escape for an hour later in the day.  No real reaction from him this time!

Unfortunatley though later this morning Ryan started shivering and spiked another fever of 38.5 and at the same time the remainder of his blood results were available showing that his CRP (infection marker) had increased from 30 to 150.  And so the doctor had to talk to the consultant to see whether they needed to treat this as an infection and change his anti-biotics and not let him leave for the hour.

The consultant said that if his temperature reduced with paracetamol and didn't return this afternoon then the anti-biotics would not be changed (he is currently on 3 third line anti-biotics) and he could go out. At the time of writing his temperature is 37.9 and he is in bed under the duvet so if we do go anywhere it will only be a brief walk around the hospital but at least it a change of scenery after almost 4 weeks in isolation

I also know that some of you would like to know how the 2 other English children are doing and I'm sure they won't mind me telling you:

Vanessa Riddle was a record breaker seeing her first WBC on day +6 and being discharged on Day +14! Her counts have stayed strong, she looks fantastic and has been feeling well until getting a slight cold in the last day or so.  She has been attending a day clinic twice a week for the last two weeks and providing her counts tomorrow are still good she will be flying to Scotland on Thursday for approximately 2 weeks before the start of her immunotherapy treatment. Vanessa has become a twitter celebrity and has 32.5K followers! You can follow her story at http://vanessasjourney.com/
Jamie Inglis has also done well, his counts started to show at the same sort of time as Ryan's and have also stayed strong. Unfortunately though Jamie's mouth, and tongue in particular, was damaged by mucusitis making it very hard for him to eat anything.  He was moved from isolation to an oncology ward last week as the only thing keeping him in hospital was eating and drinking.  He has been getting out most days to the parents house and has been happy and active and has slowly been able to eat again and is now hopeful of being discharged to the day clinic tomorrow.  You can follow his story at http://www.keepjamiesmiling.com/


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