HAPPY BIRTHDAY ZACH!!!!!

First of all, apologies for the delay in updating the blog. We finally managed to make it home for a few days before and after Zach’s birthday but unfortunately Zach spent his 1st birthday on the ward. We went home on the weekend of the 18^th Oct and we were coming in on day care over the weekend so Zach could receive medication to help his system recover from the chemo. On the Sunday we woke to find Zach just wasn’t interested in anything and was really lethargic. Immediately we started to think something wasn’t right. He didn’t have a temperature at that time but when we arrived at hospital and explained what was happening, the nurse took his temperature and it was 37.8 degrees Celsius. He had an infection; we were readmitted there and then.  The nurses’ monitored Zach and he was put on antibiotics once he had a temperature of 38. He slept for the rest of the day and night. They took lots of samples to try and find out where the infection was. He also had a CT scan as they were concerned that he might have pressure on the brain (hydrocephalus). The sight where his Omaya reservoir is had swollen but thankfully all the results were negative. A doctor explained later that a lot of these “infections” never produce any positive results but each time he has a temperature they have to treat it with antibiotics. The problem with this approach is he can start to become resistant to the antibiotics. Unfortunately when Zach is neutropenic, (he has no neutrophils to fight infection) they have to fight it for him; otherwise it could make him seriously ill. He also had to have a blood transfusion with platelets which sounds drastic but is entirely normal at this stage, as is the infections. It’s not uncommon to see kids riding a drip stand with a bag of blood on it, whilst mum or dad are pushing. He got another infection a week or so later but this time they think it may have been one of his scars that had become infected. Never the less we got home the day after his birthday and had the rest of the week at home (apart from the day care visits) which was entirely uneventful…….GREAT!!!

Zach was completely spoilt rotten on the 28^th by the staff, family and friends alike. He now has more toys than Santa’s grotto. We’ve had to order another toy box to squeeze them all into the house. As Zach was being treated for an infection, we were put into a single room, so we managed to decorate it with banners and balloons, much to Zach’s delight. His behaviour has returned back to normal and he is eating and drinking, although he doesn’t care much for savoury food or anything with lumps or too much texture. He has started to lose his hair, and the curls have gone, but the cheeky chap is still very much present.

Get your aprons and gloves at the ready; we are now into cycle two. He has managed to start his next cycle on time as his blood count was sufficient. Finally we have some good news, the last sample of CSF (Cerebral Spinal Fluid) came back showing no cancerous cells and the bone marrow samples he had taken at the start have come back showing no evidence of disease. The chemo is working although it is early days. The lack of cells in the CSF means that the chance of it spreading within his central nervous system is significantly reduced. The next major mile stone now is having a bone marrow stem cell harvest which should happen before cycle three.

Speak to you soon.