Hello again,

Thanks for all the kind words of support in your posts. They are all helping to keep our chins up while we wait, wait and wait some more. We’re all starting to get a bit fed up now, but we know it’s the means to an end and writing this is helping to keep some of the boredom at bay.

We have included a pic taken of Zach in the multi-sensory room. This is in the complementary therapy unit within the ward. It has some lava lamp type cylinders that have ambient lighting within and fibre optics which Zach is sat amongst. It gives us some time away from the hustle and bustle of ward life, although once it’s all up and running and the music is on, you do find yourself choking up as your mind wonders. Zach now has a U-shaped scar on the right hand side of his head, which you can see in the picture. This is where the Omaya reservoir is situated. It doesn’t bother him too much as the Neuro surgeons have severed the nerves to that area, so we are assured he shouldn’t feel anything. This will also help when it comes to accessing the port with needles for his treatment. The scar is behind the hair line so once the hair grows back you shouldn’t be able to see it.

We have attached another picture of Zach which was taken around the time he was diagnosed with Retinoblastoma (Rb). Some of you may have not noticed at first but his left eye has no red reflex or “red eye”. This is one way of spotting Rb, although it is very rare with only 40-50 children a year being diagnosed in the UK. If you would like to find out more about the signs and symptoms of Rb then go to the childhood eye cancer trust web site http://www.chect.org.uk/cms/index.php/signs-and-symptoms. Fortunately we don’t think Zach was displaying any of the signs or symptoms of his brain tumour when he was diagnosed but there is a website for the research centre that Prof Grundy works in, its www.cbtrc.org. There is a picture of Prof Grundy there just in case anyone wondered what the Professor looks like. If you go to http://www.headsmart.org.uk/ they have a good guide to recognising signs and symptoms of brain tumours in children and young people.

Zach has now started his chemotherapy. It will be a “fairly intense course followed by a very intense course” as the Prof described. The protocol for his treatment came from the children’s oncology group which is in the states, as the UK children cancer group doesn’t have a protocol for the combination of two types of tumour that Zach has, which goes to prove how rare his combination of cancers are. The chemo he is receiving hasn’t be given at this hospital before but the Prof has used this protocol before. It will make Zach very poorly; most kids including Zach spend a lot of time sleeping during their chemo, which is best for them. He will most likely lose his curls, and he will probably lose weight. He may end up with a nasogastric tube to help feed him if he is off his food. Having spent a wee bit of time around other children who have cancer, suffering the symptoms above doesn’t seem to affect them too badly, there is still screaming kids running up and down the wards, the play room is used a lot by them, they still smile and get up to mischief. They are a lot better with just getting on with it, than us adults. Even Zach who was a bit sick today still managed to pick his head up from the rim of a sick bowl and smile at the nurse as she walked past and he had some food at supper time as well which goes to prove he must be a Sinclair!!!!

I hope that you are all doing fine and this is managing to keep you all up to date. Please keep spreading the word on how Zach is getting on and look out for the next post.