Hi,

Last night we received the results of Zach’s MRI scan from that day and it’s great to be able to share with you our GOOD NEWS!!!!! His brain tumour has reduced in size by half and the residual disease around his brain has gone. The tumour in his eye looks like it may have disappeared too. We will still need to have that checked out by an ophthalmologist, but it was clearly visible in his first scan, so that is very promising.

The next milestone now is to have Zach’s bone marrow stem cells harvested and implanted prior to his “Mega therapy” protocol starting. The harvest will be done in Birmingham which will be done through Zach’s Hickman line therefore not causing him any discomfort. There is also a Retinoblastoma clinic there which just happened to have been set up by our Consultant, Professor Grundy. At the Clinic in Birmingham they have a “Retcam” so they can take pictures of the retina and compare it to previous pictures.  

Zach is now starting to keep down his feeds that he receives through his nasal line. This helps in two ways. Firstly it means that he will get nourishment from his food and help him recover quicker and secondly it will protect him from the fluid that he has been receiving. If you don’t have enough protein in your system, your blood vessels start to leak fluid. So by giving him feeds it means that he will get rid of the fluid in a more conventional way other than it leaking out into his body. The doctors think that this may have contributed to the respiratory problems he had the other week.  Another advantage is that we are also able to give Zach his medication through his nasal tube, which is less upsetting for Zach.

Speak to you all again soon.

Hi Everyone,

We finally managed to make it home on Thursday, only 24hrs after we were expected to depart, due to a bit of a cock up with Zach’s drugs. After a rush hour trip home we got in the door to a cold house, which didn’t surprise me given no one had been in the house for a few days. As I opened the cupboard to the hot water tank and looked at the controller, I was met with a blank screen, after pressing every button and switching everything off and on, there was still nothing. Frustration soon turned to anger, as I thought “is there anything else that can go wrong”. I managed to get an engineer out to look at it the next day but he couldn’t help either as the part it needs, he doesn’t carry so we spent the weekend living with the hum of fan heaters. At least the immersion heater still worked so we could still get hot water.

The force is strong Zach!!!

We are now into cycle three. The fluids Zach receives during his treatment have been recalculated to avoid the bloating and other side effects of having too much fluid going around his system. He is still tolerating the feeds through his nasal gastric tube and even managed to eat some solids over the weekend which is great. His personality is starting to show a bit more, especially his temper. We often get a grunt or scream if things aren’t quite going his way which makes us laugh, unless it’s three in the morning and he’s had enough of sleeping in his cot, then I think it’s his turn to laugh.

While Zach has been in hospital, he has been collecting “beads of courage”. These come from America, and you are given them as a way of recording your stay in hospital. You get one for pretty much everything that happens to you in hospital from having an overnight stay to getting general anaesthetic, injections, treatment or dressings changed. As you can imagine Zach has quite a collection of beads now. Apparently the record for the ward is 15m, and that is a record we definitely don’t want to break. At the moment his beads are about 1m long. 

Zach is due to have another MRI scan on Wednesday to see how the treatment is affecting the brain tumour. We will write another post with the results so keep everything crossed.

Speak to you all soon.

Hi again,

May we just firstly say thank you for all the messages of support we are getting through the blog. They are helping us when we need a “pick me up”.

The just giving page is going well. As I write this the total is at £1,332.39 which is fantastic so a big thank you to everyone who has donated.

Well it's week six of cycle two and things aren't getting any easier I’m afraid. Zach has been picking up bugs left right and centre because he is neutropenic. This means he has no way of fighting infections or virus'. These usually manifest themselves with a temperature of 38 and above. When this happens we have to take him straight back to hospital. He has had a few more transfusions of blood and platelets and plenty of anti-biotics. Zach has pretty much stopped eating now and isn't drinking much either. Has to be topped up with intra venous fluids, this is a double edged sword though as he doesn't develop a thirst when he is getting fluid so won't drink, and because he doesn't drink they have to keep putting him back on fluids. I think the fact that he isn't feeling very well doesn't help either with the eating or drinking. Zach has had a nasal gastric tube put down so that we can feed him. It looks worse than it actually is and apart from when they put it down initially, he hasn’t been bothered by it in the slightest. A lot of the kids on the ward have them so it's quite normal here. Zach also developed a virus in his lungs over the weekend so has had to have yet more anti biotic and a nebuliser along with some oxygen to help his saturation levels as they were dropping quite a lot. This looked quite scary watching a little boy panting and groan with every out breath but the staff didn't seem too disturbed by it, which is reassuring in a way. They kept telling us this happens a lot as well. It has now transpired that Zach may have had his system overloaded with fluid. He was re admitted on Friday after about six hours off the ward with dehydration. He was given a fluid bola which is saline syringed straight into him via his Hickman line. This was done twice then he was put straight on to continuous IV fluid. This then gathered in his lungs and looked like an infection/virus on the x-ray, but his rate of recovery has been too quick for it to be a virus/infection. He is now having a week off the chemotherapy as he hasn't had a break since the treatment started, and he is exhausted so it will definitely do him some good.

The other patients or should I say their parents haven’t been helping the situation either. When Zach had gotten over his last infection he was moved out of his side room back onto the ward. That night at 0045 peppa pig could be heard on repeat coming from the next bed, when a nurse went to turn it off, the little cherub went mental so it was turned down. Mum then decides to watch a film till 4 am. Needless to say words were had with staff the next day and rules were loosely enforced but poor Zach, who was exhausted anyway, was set back by this episode and I think it made him a little bit worse. It is difficult living with people from all parts of the social spectrum. 

Well we are all looking forward to getting home and sleeping in our own beds for a few nights before the next cycle starts on Sunday. Keep reading the blog and we’ll speak to you all soon.

Hi Everyone, 

We have set up a just giving page http://www.justgiving.com/Zachary-Sinclair so that people can donate money to charity in aid of Zach. People have wanted to donate money to a charity but didn't know who to donate to. The page has been set up for the Children's Brain Tumour Research Centre, who are based at the Nottingham Queens Medical Centre, where Zach is receiving treatment. Prof Richard Grundy helped establish the centre along with Prof David Walker. Richard is Zach's consultant and David has helped treat Zach on several occasions. 

 Whether it is a donation or a few words of support on the blog they do make a difference to us knowing that people are thinking of us.

Speak to you all soon and thank you 

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.