Funky stuff from the USA

 

Yet another amazing friend of mine has done something fabulous for DoEveRYthiNg…

Kat Nobile who is originally from Griston but now lives in America, had a brilliant fundraising event for Deryn and with the $400 she raised, she went on a massive shopping spree for Deryn and Dylan. 

Deryn has received some brilliant gifts, a variety of gorgeous hats, some awesome trainers, a mini Deryn speaker (complete with bobble hat) a funky belt, a T shirt, some stickers, some sweets which are lush and some other bits and bobs….

They are all fantastic and I’m eternally grateful for the effort put in by Kat.

Not only did she raise a lot of money, she sold a lot of wristbands and ribbons to raise awareness for the cause. This is as important to us as raising funds. 

Thank you Kat…big massive hugs from the UK xxx

 

Deryn with his fab trainers! 

 

Happy with one of his hats and his new belt. 

Thank you so much everyone for everything you are all doing…it is very humbling xxx

We NEED this to go viral!!!!

An amazing young lady called Kyla Sims-Adams sang a beautiful song for Deryn the other day. It has quickly become ‘Deryn’s Theme Tune’ and I cannot think her enough for her tribute.

We NEED to get this video on YouTube as many views as we can – we NEED to have Danny from The Script see it!

Come on people – lets get this viral!

Kyla’s beautiful tribute

Thank you guys xxxx

Still smiling.

The pancreatitis seems to have realised that there’s no point harassing Deryn and it’s packed it’s bags and left town – however, pain seems to think that it can have more success at defeating Deryn so it’s turned up to have a pop at him.

Hopefully it will soon realise that there’s little point and will disappear as well.

On Sunday, Deryn had to have his nose tube put back in as unfortunately, although he had started to eat a lot more, it just wasn’t enough to maintain his weight.

He’s best friend Kim, dad and little brother arrived just in time to witness the going in of the tube. Obviously myself and simon have seen this done many times before but Dylan and Kim had yet to see what goes on.

Deryn is very open to people watching his procedures, he is a firm believer that knowledge is power and likes to educate as many people as possible about everything that occurs throughout his treatment.

So, Deryn was sitting on the bed in the treatment room, banana milkshake in hand and the nasal gastric tube was inserted brilliantly first time.

There was talk about an NJ tube which is a longer NG (nasal gastric) tube and bypasses the stomach completely to go into the intestines. This is a much more painful and invasive procedure and Deryn was not happy to allow that to happen. Thankfully it didn’t need to.

Deryn is quite accepting of an NG tube as it takes some of the pressure off him to consume so many calories each day.

Deryn has lost virtually all of his hair now, the rest I almost washed off the other day in the bath.

He’s still being very positive and is still smiling even though I know he is feeling quite poorly now, he is still making me proud every day x

Jovan Norman — woman of the year!

Jovan Norman is a woman who was on a mission, a mission to buy everything that Deryn had listed on his Amazon wish list and achieve this she did and in great style!

Jovan managed to lead the way and raise over £1500 for Deryn and they all collectively cycled  1100 miles!

She is an amazing woman who does so much for so many people and puts others before herself each and every time. She has done some fabulous, selfless things in her time and I hope one day she is truly recognised for her kindness.

We as a family cannot thank her enough for the time, effort and passion she put in to the event that she almost single handedly organised over the weekend of the 16th and 17th of November.

The little Norfolk town of Watton came together in true style this weekend, so many people helped out, carrying buckets, cycling for mile upon mile and all with the same outcome in mind. They all wanted to help Deryn have an easier time of it in hospital.

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They achieved what they set out to do, all led by the driving force that is Jovan Norman. I don’t think I have ever had the fortune to meet a more proactive person in my life….

Thank you really does not get across just how grateful we are to the people of Watton and just how proud we are to live there.

Thank you all so so much xxxx

Mary Wallace Cancer Care

Deryn’s day went according to the last few, in that he spent the bulk of his day on his beloved iPad (apart from a minor interruption by his ever persistent teacher).

I however was in store for a treat.
As Deryn’s resident carer on this particular day I was to be treated to a massage at the Mary Wallace Cancer Care centre which is only a few minutes walk from the main concourse and food court in Addenbrookes.

As a carer Callie and I are entitled to up Tom six free treatments which include Reflexology, Reiki, Aromatherapy, Indian Head Massage and a few others.

I selected the Indian Head Massage, as I had ever had one before.

Kelvin was my masseuse, in his early fifties and incredibly friendly.
He led me through what an Indian Head Massage entailed before getting started.

I would say that the whole thing took no more than twenty minutes, and involved me being sat in a chair fully clothed whilst Kelvin applied heat and pressure, as well as massage techniques, from my shoulders all the way up to the top of my head and face.

Afterwards I felt relaxed and invigorated, which in hospital is absolutely vital.

May people may find it odd that I chose to leave Deryn’s side to go and be “pampered”.

When it was time for me to go for my treatment I made absolutely sure that Deryn was well supplied with everything he needed to be comfortable, and that he had access to sufficient distractions and entertainment.
The blessing of having a mature intelligent child, is that I am able to communicate with him, and we are able to manage our relationship in hospital, so that if one of us has had enough of the other, we are able to have short breaks.

More soon, and thank you for reading.

Simon.

Bag less and hairless

Deryn’s has been taken off his NasoGastro (NG) drainage bag which was helping keep his tummy clear and allow his Pancreas to rest.

Aside from not being able to keep water down for too long, Deryn looks and feels a lot better and even managed a stint sat in the chair next to his bed rather than actually in bed, which is a big improvement.

Deryn’s consultants and surgeons are encouraged by his progress despite the onslaught of surgery and associated illnesses brought on by the barrage of chemotherapy.

Posters and cards festoon the walls of our little bed space, and it is now starting to feel homely.

A space inAcorn house should free up Jin the next few days, which will afford Deryn a nights sleep without having to listen to Mum or Dad snoring away in the pull down bed next to his bed.

Generally Deryn is well in himself, but he just gets tired quite quickly.

The words of love and support from his family and friends around the world are crucial to his on going good humour and sense of inclusion in all your lives.

More to follow.

X

So much has happened in such a short time…..

Firstly, I must apologise for not keeping this blog up to date – I have been wiped off my feet and haven’t really found the time to do anything.

I’m trying very hard to continue my studies at college three days a week, then I come back to the hospital and try, I say try as that’s all I can do to write up assignments and revise for exams whilst sat next to Deryn’s bed.

Well….

We were in the coldest room in NATO and then after about 10 days of chemotherapy, Deryn decided that he’d go and get himself a bout of pancreatitis again… I say again because he had this in December 2010. He was nil by mouth for the two weeks over Christmas and new year and dropped 2 stone!

In 2010, he was given a 1-500 chance of developing pancreatitis because of the drugs and this time round he was given a 1-1000 chance….Deryn likes to mess about with odds doesn’t he!!!!

So, here we are in our new warm room, bunked up with Arron and his mum Claire – they’re both really nice, have the same sick sense of humour (very much needed in a place like this) and Arron is almost the same age as Deryn so they get on well.

We’ve been told that the boys will be left alone now to get on with their treatment and they can put up posters, have their own duvets and get a big tv put in here for their games consoles.

At the moment though, Deryn is very ill. He’s on a lot of morphine for the pain and he’s nil by mouth again. This time they are trying it for 7 days but they are also giving TPN which is a nutrient drip that should help him keep weight on.
His bloods are dropping and they’ve stopped chemo for now so the 14 weeks has already turned in to 15!

Deryn has a bag on the end of his NG tube (yep, he got a nose tube straight away and he was none too pleased I can tell you) this bag is vacuumed and sucks out any bile that is being produced in order to give his stomach a good rest.

Hopefully he’ll start to feel better soon, he feels very hungry which apparently is a good sign but it doesn’t help him when everyone else can eat and he can smell the food…..
He’s said that as soon as he’s allowed to eat or drink, he’s going to down a load of water – I’m guessing that won’t be the best idea but goes to show how thirsty he is…he hates water!

I’m going to sign off now and try, there’s that word again, I’ll try to keep this updated more often. It’s not easy with everything else I’m also ‘trying’ to do

Thank you all so much for your continuing support – Deryn has 416 likes on his Facebook group – the messages help no end. Thank you.

Also a massive thank you to everyone who’s bought something from his wish list – I can’t remember everyone off the top of my head but please know that it’s helped him through some pretty crap times so far and I know he’ll have a lot more to come so thank you.

And of course, I can’t forget my amazing friend Kat Nobile in the US – she laid on a fabulous yard sale with all sorts of things, wristbands, ribbons etc and raised over $400!

She’s wonderful xxx

Yvonne chalk, another fab lady who’s made Deryn some wonderful bracelets to keep him adorned in pink and black

Jodie Rowlandson for bringing in a worlds supply of Pringles!

Erika Burnett for making Deryn trendy with some lush clothes.

Jovan Norman and the ladies from Tesco who are on a mission!

Deryns school and Mr rose for being so supportive.

Our family, without you – god know where we’d be now. Thank you.

And Kimberley mower – thank you

If I’ve forgotten anyone, I will remember later on and credit you, I believe in credit where credits due but my mind isn’t what it should be right now – it’s full of organelles, TEM microscopes and chemotherapy protocols!

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Deryn has had to start his latest course of intensive chemotherapy with a drug that is totally unknown to both of us. It’s an adults drug that is used for relapses.

It’s blue and it makes his wee go green….what more do you need to know? Lol

Deryn is impressed

A brand new treatment plan…..

So, what has happened since I last wrote?

Our lives have been ripped apart yet again, with each visit to the hospital we seem to be coming away with more and more life changing news.

On Friday the 12th of October, my dad took myself, Dylan and Deryn to Addenbrookes for a meeting with Mike Gattens at Addenbrookes. I didn’t expect to end up giving blood and a lot of it I’ll add!

The long and short of it is that they have decided that this is in fact a relapse and not a secondary cancer as first thought…

The histology report came back on the tissue they removed from his throat last week, it showed that the ulcerations were cancerous. They also shared some strong similarities on a genetic level with the original cells that were present when Deryn first got leukaemia.
Because of this, this have decided to treat him as if this were a relapse.

If you know anything about a leukaemia relapse, you will already know what they have decided to do – for those of you who don’t know, I will now explain in the best way I can.

The guys in the know have opted to give Deryn a bone marrow transplant. This will mean that he will undergo intensive chemotherapy again but this time it will go on and on for 14 weeks. Providing that they can find a donor after the 14 weeks is up, he will be moved to Bristol where he will start what they call conditioning.

They will effectively strip his bone marrow away to make room for the new bone marrow. If they leave any of his dodgy bone marrow or cells in there the when they do the transplant, the dodgy cells will just take over the new marrow and the transplant won’t work.

They have warned us that he may spend up to 5 months in Bristol, it will all depend how we’ll he responds to treatment and if he picks up any infections. He’ll spend a lot of his time in Bristol in isolation as any tiny infection could be very harmful to him.

They would have ideally wanted a sibling to donate but Dylan is not a full brother so he won’t be a match, the next place they want to search for a donor is the national database because the next best thing is a totally unrelated person. IF they can’t find a suitable donor, then I’m their last resort. I’ve given my blood for tissue testing ‘just in case’

Apparently Deryn has a good chance of getting a donor because he’s white European. It’s remarkably more difficult for children from black or Asian backgrounds.

Finding a donor doesn’t take too long, it’s the preparation that takes the time so the sooner we can find one, the better.

So, the next few months will be very stressful for all of us but Deryn will be the one who’s having to endure the pain, the sickness, the generally feeling like death and I’m so sad that he has to go through this all over again but worse.

He’s aware of what’s coming and he’s also aware of the implications if it doesn’t work….

He’s said, and I quote

“I haven’t lost anything yet, I’m very competitive and I don’t intend to lose this either”

I am amazed and humbled by him every day.

Tomorrow we are going to Addenbrookes to have another Hickman line put in…..never thought I’d see one of those again.

If you wish to read any more about a bone marrow transplant, I have found this website that gives you all the information..

http://www.nhs.uk/conditions/Bone-marrow-transplant/Pages/Introduction.aspx

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The wonderful ENT surgeon, Dr jarne said that he’s very happy with the results of the surgery. He’s confident that he got it all out.
Still, it looks brutal but Deryn is very comfortable at the moment, the morphine may well have something to do with it! X