Please note Malachi is allergic to anything with strawberry or kiwi flavourings
Story written 2014
Malachi was born on the 4th of January 2008 and he was diagnosed at birth with neurofibromatosis type 1 (NF1). Just after his first birthday we had concerns about his development and as both of his brothers have NF we were referred to The Evalina Hospital in London for a MRI scan. Within a week the results showed they had found a tumour on his optic nerve (brain tumour), one of the largest they had seen in a child of his age. He started chemotherapy straight away with the hope of stopping the growth and saving his sight. However, after 18 months of chemo and being a very poorly boy throughout it all, they managed to halt the growth but sadly couldn’t save his sight and he went completely blind without any light perception at the age of 3.
Malachi coped really well and adjusted to life without any sight, he started nursery and really flourished and then moved onto reception in a mainstream school. The year 2013 brought new problems for Malachi as he started to get really sleepy and was complaining of pains in his head. A CT scan revealed he had enlarged ventricles and hydrocephalus was diagnosed. He had a ventriculoperitoneal shunt (VP shunt) fitted in the March. They are supposed to be very reliable but since then he has had two failures resulting in him going through two more lots of brain surgery. Thankfully he is under an amazing surgeon and this third shunt seems to have settled down well now.
Malachi recently had another planned MRI on his brain tumour (July 2014) and this has shown that his tumour has started to grow again. They are going to scan him again in September and then decide on the next course of action.
Update 15th February 2017
Malachi has been very depressed and has been referred to the mental health team, but they have not been able to help him as they say his issues are too complex!
It all started when in October they told us in front of him that his tumour had shrunk, but this was not the case and they had indeed made a mistake. This has devastated Malachi who doesn’t now want to carry on! He keeps saying he wants to be normal, but with no vision at all and having no light perception this is a wish that obviously won’t come true. We as a family feel like we are on a rollercoaster and Malachi is very upset.
He also has started early puberty which is proving to be very difficult and his endocrine doctor has started him on a large dose of monthly hormone injections to hopefully halt the problems he is having.
We really appreciate all your post and letters of support to him, thank you.
Update 6th October 2016
We’ve had a small tumour shrinkage, yay! But I’m on an emotional rollercoaster, it’s fair to say!
Yesterday we went from worry and nerves at waiting for the scan results to elation and excitement at the shrinkage, then we plummeted to an all time low which I didn’t think was possible after such good news!
Malachi’s mental health dropped to an all time low. He thought in his little mind if the tumour was to ever shrink he would get his eyesight back. Oh how I wish this was true. When he didn’t, he broke down. He’s devastated!
My boy has been so brave and courageous in his fight and we know the tumour is still there, albeit a little smaller, and we are so thankful for this but for malachi this doesn’t mean it’s all gone away. He still has his tumour, hydrocephalus and epilepsy, but to him all these things are secondary to him, he wants to see the world and see it with his eyes!
It’s so unfair. I feel angry. I feel desperate that I can’t do anything to help him get what he really wants – his eyes!
He has been given an urgent referral to CAMHS, which is the local mental health team as he keeps saying he now wants to die, saying he wants to take it all away. It’s so unfair that he can’t see the world. As his mum it feels unfair. He’s never seen me. I hate that he misses out on so many normal things like colouring, climbing unaided, reading, running towards something, looking at the sea, the birds, the grass. It’s just so cruel. I hate cancer!
Since 2am this morning, 6 October, he has stated over and over again that he wants to die. I’m exhausted and I’m shattered. As his mum I feel heartbroken. I feel lost. I feel desperately lonely. Life has never been the same since this nasty ugly tumour took hold of my precious child. I feel so totally lost for him.
Update 7th September 2016
Malachi had his 13th brain op at the end of July which caused Malachi to be very depressed and sad, he has now been referred to Camhs as he keeps wanting to die bless him obviously this has been very stressful but hopefully counselling will help him. He’s in constant pain with severe pressure headaches as his shunt keeps blocking but he is really looking forward to meeting everyone at chessington soon.
Thank you for everything you do to help make our kiddies smile again.
Update 7th July 2016
Was lovely to be at the party this year and so nice meeting everyone. The whole family loved it, even our son, Samuel, with Aspergers. He usually finds parties quite hard to handle but we all went home smiling.
Update 16th May 2016
Malachi is suffering with more and more seizures and is having headaches so has been in hospital.
His brain scan showed, again, enhancement but no growth!
Update 12th April 2016
Malachi is suffering from headaches and was taken into Kings where he underwent CT scans, etc. They feel it may be the tumour. He is having an urgent MRI and bloods, etc. tomorrow. Malachi is very worried and he described himself as being sad.
Update 22nd January 2016
Malachi’s tumour has enhanced again and his seizure activity is getting worse. He is having loads of endocrine tests at the moment so is a little fed up with hospitals, bless him.
All of my other children Zech, Samuel & Ayesha have now been referred to children’s mental health team as they are struggling with everything.
Special thank you to Samuel’s elf for sending a signed Charlton ball. Samuel has Aspergers and doesn’t show much emotion but went mad with excitement over this present. So a massive thank you.
Also a big thank you to Marty Longo and Skye who always remember to send Malachi smile letters.
Update 22nd October 2015
Malachi had his MRI this month which showed enhancement of his tumour. He has been very poorly and lethargic, sleeping all the day and he was rushed into hospital and ended up in HDU. He is now back home but could do with some extra smiles as life has been very disruptive for him with the uncertainty of what will now need to happen, such as chemo or possible debulk if it gets any bigger!
Malachi continues to try and boost his brothers and sister who are really struggling at the moment with us always needing to be in hospital or at appointments.
Update 6th July 2015
Malachi continues to need constant help and is having seizures, though coping well. Malachi’s tumour was stable at the last scan but they are to re-scan in September and see if it’s still the same.
Thank you for your continued support.
Update 6th May 2015
A big thank you to Skye for writing to Malachi, he loves hearing from her! He loved his good luck Tiki from New Zealand too.
Update 10th April 2015
The operation went really well, even though it was longer than normal, but they had to replace the whole shunt system. He had stomach surgery too, bless him. While under they also did the other correctional surgery that was needed!
Afterwards he started having fits so was rushed down for a CT scan to check for bleeds but thankfully it was ok. They are not sure what is causing them, so we are waiting to see a Neuro doctor this morning. He continues to be in pain today so is on morphine and very out of it, bless him. He is fitting still now, it seems to be constant, so they have ordered an urgent EEG!
Our other son’s wedding is tomorrow so please pray we make it! In recovery when he found out he’d had stomach surgery as well his response wasn’t: ‘Oh it hurts’ or ‘Why?’ It was just concern over not being able to have a bath before his brother’s wedding! His exact words: “Great I’ve got to walk down the aisle dirty now!” He never ceases to make me smile!
Thanks again for your support and prayers!
Update 9th April 2015
Malachi went for his appointment in Guy’s this morning and had some sort of seizure and vomited whilst in the consultation. It was decided it was his shunt again, so he was brought to King’s and we are once again in Lion ward!
Update 22nd March 2015
Malachi has been in hospital most of this year and has needed seven brain surgeries. This month we have been told the sad news his tumour has grown and another one has appeared and spread into the septum of the brain which is causing hydrocephalus and shunt failures. Malachi’s consultants have said they cannot operate (which they would normally do) as his is in a place where if they operated on it he would be completely brain damaged and they said he would have no quality of life. We are monitoring it at the moment and we may have to start chemo at some point in the future!
Thank you for the children’s post, especially the lovely balloons and Malachi’s regular letters from Skye, Marty Longo, and a school.
Thank you again for all the hard work you put in to this charity because it really has helped my kids and the smiles it creates have been amazing.
Update 14th December 2014
Malachi has been in hospital for emergency brain surgery. He had another shunt blockage so had emergency surgery, only to find out when he was under that he had a bleed to the brain. They put in an EVD external drain and we now may be in for Christmas as he will need more complex shunt surgery before we are allowed out.
Malachi loved the balloon he received that was delivered to the ward, thank you.
Being a part of Post Pals has brought a lot of smiles to our children’s faces.
Update 8th November 2014
We are loving Post Pals, Malachi gets so excited when the postman posts the post through the letter box. Today he received some fantastic stickers from Australia and he straight away asked for a note pad and started sticking his stickers in. He said “this is amazing mummy, I’m going to make a happy book to make me happy when I feel sad”. So he now has his own sticker happy book! Thank you Post Pals as the smile on his face is amazing and they were foam stickers which meant he could feel them!