It’s been a while!  

Firstly, apologies for not updating the blog for sometime. Zach is very much developing into the 3 year old that he nearly is. He has been bum shuffling since spring. It would appear the penny has finally dropped and getting things yourself is far easier than gesturing at everything in the hope it will be pasted to you. The appetite is being helped by the need for calories to fuel the movement. He is eating a lot better than he had been. For a little while he wasn’t keen on eating and would fight tooth and nail, causing his mother and I quite a lot of grief. As you’ll see in the pictures all of Zach’s hair has grown back. You would never know he had been ill looking  
  at him now. He did get some treatment in the form of Retinoic Acid (Vitamin A) which will hopefully mature any cancerous cells that linger post chemo. Zach had this for two weeks in four. He’s had four cycles of this. He was due to have six but Prof Grundy decided that four cycles was enough as Zach was starting to develop other medical problems which may have been associated with the toxicity of the drug. Needless to say once he had stopped the Retinoic Acid, Zach recovered and has had no further problems other than what he picks up from nursery. Zach is now in the process of having all his immunisations repeated as the high dose Chemotherapy and subsequent stem cell implant have knocked out his previous immune system. All of his check ups at Birmingham so far have come back with very good results. His eye tumour is showing signs of shrinkage when compared with all his previous images, but there is a patch that needs to be monitored as it could flare up. If it shows no sign of doing so after the next 2-3 check ups the doctors are happy to start lengthening the gap between visits. Zach is having four monthly brain scans, which are coming back as showing no change to his tumour, which is good. It remains 7mm in diameter, which compared with the 17mm it was at diagnosis, is quite a change and all that shrinkage occurred in the initial treatment he had. 
 

We are now very much gearing ourselves at getting Zach back on track with his development post treatment. He now has a team of child health and development specialists who are looking at what support he needs now and making sure that he gets it. We attend regular meetings with them all where we discuss which stage he is at with medical treatment and how he is developing, what needs to happen next and how we will facilitate that. His nursery has played a massive part in getting all of this started. When we left hospital after his high dose chemo, we were pretty much left with no idea of what was happening next. We knew what was planned for him medically, but developmentally we didn’t have a clue what to expect or where to get help. It would appear that the health visitors should have been all over this but Zach had unfortunately not seen a health visitor since he was eight months old. We now have a new health visitor who heard about all of this and she is keen to try and help, although it would now appear sometimes that she too is out of her depth.  

Zach’s nursery has very much gone above and beyond making sure that Zach gets all the help he needs. They have secured funding so that he can have one to one help around times in the day when Zach needs more help than the other children. They are also looking to invest in new equipment for Zach again through funding they have access to. He will be moving up a class in September so will become a “busy bee”. This move will hopefully trigger a new phase in his development and he’ll come up against staff that can push him that little bit more. It was felt the ladies who look after Zach in his current class, maybe give way to his demands a bit too easily as they know his history, which is understandable, but Zach now requires a firmer approach. 

Zach is very mischievous now which is brilliant. He is quite an independent child, and will only want help if he gets stuck or needs a bit of encouragement. He does get very frustrated which is funny to watch as he’ll scream and shout to try and get you to do whatever it he wants but he’s getting there.  Hopefully it won't be long until Zach is able to walk and talk, then there will be no stopping him.  

 

We have received a lot of support from family and friends and want to thank everyone for donating to Zach's just giving pages.  We have recently ordered our first cot for PICU and will hopefully see that delivered soon. Many of you will know Granny Sinclair ran the London Marathon for CHECT and Nana Adcock baked cakes to raise money for the Children's Brain Tumour Research just giving page we have. Big hugs to both of them x