Hi again from Ancaster

That’s right we’ve been home!!! We managed to get a couple of weeks at home while we waited for Prof Grundy to get information from Birmingham Children’s hospital on Zach’s current health. We went to Birmingham on 12 - 14 Feb. We were there to get a bit of an MOT on Zach, and to get his retinoblastoma re-assessed by the team. The results were that the tumour in his eye is pretty much dead and any viable tissue they think is present can be treated with a laser. Which just leaves the brain tumour…After the MOT, Zach was assessed as fit enough to be put back on treatment and high dose chemotherapy?.

We returned to the QMC on the 23rd of Feb to restart Zach’s treatment but his lymphocytes were too low and we were sent home again on the Wednesday while we waited to hear from an immunologist. These are the white blood cells which fight viruses. These have been low in Zach since November, and Prof Grundy isn’t sure if it is a hangover from the spell in intensive care, so we should find out soon. When we get the nod, Zach will be put on an 80% dose of his previous chemo treatment and what happens next will depend on how he reacts.

We were called back in on the 4th of Mar to start treatment and fortunately Zach has tolerated the 80% dose. We are back at home waiting to go to Birmingham so Zach can have his stem cell harvest. He is due to have another MRI at the end of March to assess what effect this treatment has had. What we have to remember is that in the 34 days Zach was in PICU, he didn’t have any chemo and his tumours didn’t get any worse or spread. They are reactive so we just have to keep everything crossed.

My squadron (5 Army Co-operation Sqn) have been putting a lot of effort into organising fund raising events to try and raise a bit of cash for CLIC Sargent. This is the charity that run Billy’s house across from the Queens Medical Centre. We have used it extensively whilst we have been in patients for our own use and for family. It helped alot particularly when Zach was in PICU as we had family coming from all over to see us. In there first event, there is a team running the Lincoln 10k; they have a just giving page https://www.justgiving.com/teams/SentinelEngineeringCharities2014 and have set a target of £1000.They also very kindly took Hayley and I out for a curry and a few drinks in Lincoln. It was a much needed evening of respite and it was good to see everyone again and for Hayley to put some faces to the names she has been hearing about.

Hayley’s WO was also able to meet up with us. RAF Coningsby Personnel Management Squadron is in the process of raising funds for the PICU in the Queens Medical Centre. The aim is to raise enough money to help buy a new bed for the unit. While Zach was in intensive care, he was put on a trial bed. It has four movable plates which mean that rather than try and man handle him every few hours to stop him getting sores or help with ventilation nurses and doctors just need to push buttons and the bed does the rest. It also has clear plastic sides instead of the horrible bars on a standard NHS cot. It has lots more benefits but you get the gist. they will be holding events in the near future so watch this space!!!

Well a massive thanks to everyone for all the support we have been getting, be it running 10k's, replies to the blog, donations to just giving pages, or simple texts or emails asking how we are getting on. We aren’t religious people but some of you have been lighting candles for Zach, which we find very touching thinking that they are burning for Zach somewhere. 

Speak to you all again soon.