Shay and Neutropenia

Shay is classed as 'Neutropenia' this means he has an abnormal low number of a particular type of white blood cells called neutorophils, at the moment Shay's is 0.3. The white blood cells are the cells in the blood that play an important role in Shay's immune system by fighting off infection. Shay gets infections easily and often, most of his infections occur in his lungs, throat and sinuses. Over the past few months he has ended up in hospital because of these infections. In our hallway in sight of everyone is antibacterial hand gel; we are asking everyone who comes into the house to use this and to also take off their shoes just to give Shay that extra protection.

Another Dreaded Cold

Shay has had another cold the last couple of days and a few crackles in his chest. The Doctor has put him back on antibiotics and he is back on his ventolin of 24 puffs a day.
Only last night Alan & I were discussing that we needed to find out Shay's consultants name at Watford General. Amazingly we received a packet in the post this morning from Jemma his nurse at GOSH with his emla cream/plasters and a note saying who the consultant was at Watford and also their mobile number in case we needed anything (very spooky). GOSH have been absoultely fantastic in their care of Shay and we can't praise them enough for all they have done for him.

Will this ever end




Its hungry work taking all this blood in. My first blood transfusion, its never ending.

All About Me

Shay came into this world at the amazing weight of 9lbs which was a shock to Alan and especially myself. Shay developed a dairy tolerance from 8Mths this was noticed as soon as he stopped breast feeding and quickly settled down to his still favourite soya milk. Shay's health started declining from May 08,at first we didn't think anything of it. Cold's, virus's normal things what any other child seems to get.Shay became a very fussy eater in May 08 and this gradually got worst through to the August where it was very hard just to get him to eat. Over the summer holidays 08 until December 08 Shay's health took a rapid downward spiral. Any slight cold would turn into a lung, chest infection. He was having them back to back. Numerous visits to A&E, with the Doctors just sending us on our way with calpol. Shay has been through a lot the last few months with countless blood tests, bone marrow biopsy and a blood transfusion. On January 20th 2009 our world collasped with our little boy being diagnosed with (99.9% sure) Myelodysplasia (MDS) This is an extremely rare disease in children and normally affecting older people. The outlook for Shay is he will need a bone marrow transplant, he will spend a minimum of 2 months in isolation having this done and once home will be in semi-isolation for quite a few months afterwards. At this moment Alan and I are waiting to hear if we are a match so we can be his donor. Throughout, Shay has been a happy energetic boy, what ever is thrown at him does not get him down, he has a very very long road ahead of him and know he will get alot worst before he gets better. The reason for this blog is to keep all friends and family informed of his health and to thank everyone for their support and concern.

Hi, Shay here,

this is where everyone can keep tabs on me. I will keep you updated as much as possible.