Lots to do! & Shingles!

Life never stands still and one day very quickly turns into another and we never seem to have achieved an awful amount. Especially this week, with Skye being back in hospital. Sally has been a little bored so I know has been pinging out emails. Skye has picked up a nasty infection which the Drs couldn't get to the bottom of. Last week, he was put on antibiotics to clear infection that was brewing on the back of his oral ulcers, but on Sunday things suddenly got worse and he had to be syringe fed, and only managed a total of 250ml during his waking hours. His favourite pin (aka injection) nurse popped round on Monday to check his bloods and sent him straight to hospital, and he has been there ever since. Not that we hadn't tried to contact the hospital on Sunday! We spoke to the nurses on the ward twice asking to speak to the on call doctor for advice, but they had not had a chance to get back to us and by Monday things were a great deal worse. Anyway, even more justification to do what we are about to do! On the back of a conversation Sally had with David Cameron, when he visited the ward, and conversations with our Consultants, we are about to launch a Charity to fund research into the treatment of Medulloblastomas. Just because we are bored and have nothing else to do ;-) Staff at the JR are working under real pressure and we are seeking to try and help there too. There is some really good research going on in Newcastle and there are no specific charities for Medulloblastoma and not a great deal of money available - so here goes. This is not a short term project for us, it will be a long term effort to assist where we can to develop the treatment modalities when dealing with Medulloblastomas. At the moment, treatment follows a particular protocol regardless. Within the classification of medulloblastoma, there are a range of different cells, which react to different things. With further research they will be able, hopefully, to individualise treatment for each patient, allowing for better outcomes! In layman's terms! Charity - Help Required! We are trying to come up with something catchy, but struggling because there are lots of big words to get in. Examples of what we are trying to do, bearing in mind that I do not consider myself to be a creative type, more of a practical type!

 

MAD FOR SKYE -Medulloblastoma Appeal Designed For Ongoing Research

 

SKYE TRAM - Treatment and Research Appeal for Medulloblastoma

 

SKYE SMART - Supporting Medulloblastoma Appeal for Research and Treatment

 

That sort of thing! Haven't had a chance to run thoughts past Sally yet, but we want it to have 'Skye' in it, and we need it to be broad enough so that at some stage if we wanted to give money to Kamran's Ward for equipment or UCLH Radiotherapy Department, the funds could justifiably be used for that. Hence Treatment as well as Research. Once we have a name we will set up the charity and start on the website design etc. Other words or letters: B , Trust, Fund, Exploration etc. No prize, just a big hug for the person who comes up with the 'eureka moment' or 'inspirational acronym'! Oh yes, they finally diagnosed shingles. He looks horrific, not going to share the photographs! They have him on additional morphine, antivirals, antibiotics, antifungals and IV nutrition. Having so many machines round his bed looks quite cool. Had the nurses confused last night, when we removed his HR monitor, because it was irritating him, and put it on me. Had the nurses jumping, when his HR dropped from steady 153 to not so steady 62. (Still in decent nick! Not really!) Unfortunately this probably means a delay to the start of his next course of chemo, which is less than perfect. Sally being amazing as usual.