NHS Needs to join up its services to support our most vunerable young people and become more cost : September 2017

Friday 15 September 2017

NHS Needs to join up its services to support our most vunerable young people and become more cost : **** The Fun Day is nearly here some sad news as w...

**** If I beg will you read and Share please **** Bribery with chocolate is also an option . Would love to get 5000 people to see this , can you help ?xx

**** The Fun Day is nearly here some sad news as well.

What a Pic!

I thought that I must start with the picture above as I love it . You cant find two more handsome men. Their shared experiences allow understanding and emotional support to develop which is hard to understand unless you have faced similar circumstances .
It is soooo positive that Martin shares his story with others as it gives hope, information and support . In addition to this it increases awareness of brain tumour s which is vital.
In the region of 450-500 children a year are diagnosed with a brain tumour , making it incredibly rare . This means that many GP's will never see a case in their career. When Tyler was first ill we were told it was migraine, we were very lucky in that our lovely GP believed me when I said no migraine causes what Tyler was going through . We got Tyler to an MRI scan quite quickly many families are not that lucky and vital time is lost with devastating consequences.
So the more publicity about what to look for the better.
Tyler is now an Young persons Ambassador for Brain Tumour UK and I know that Martin supports them as well.

Together For Tyler

I would like to thank each and every person that has donated, we are getting there bit by bit. We still have quite a long way to go but exciting things coming up , including a fun day(28/10/17 Oct) and Tonys last 10 k/Halloween event (30/10/17). Thank you to Chris and Dion at the Windmill who are helping me to organise this .

I was also thrilled to hear from a parent of someone Tyler went to school with who is looking into a scalatrix afternoon, sounds like lots of fun , thanks Sarah.

I have to also say a huge huge thank you to Stuart from Spirit and Stephen at the Observor (plus everyone at both firms). I think that without them stepping in when they did I may well have give up the Ghost !

Please please do put your thinking caps on and if you can help in anyway let me know.

The Fun day is Sunday!!!

I don't think that I have ever worked so hard as I have this week. This year's fun day is much bigger than last years , I guess as last year was so popular , more families are coming . This is absolutely wonderful its just a lot of work, I know that it will be an incredible afternoon and I am so looking forward to seeing all the Tyler's Trust Families .

I have to thank each and every Trustee/Supporter who has helped us to get ready for the day, also particularly to Michelle who save my sanity this morning by helping me finish the presents off !!

I will still be up late finishing all the admin off but it will be more than worth it .

To give an idea of what happens on the day :

Each family gets a free 10x 8 photograph,there is a pamper area where hair and nails can be done,each child also gets a present . In addition to this there are vintage car rides courtesy of Sporting Bears,entertainment,treasure hunt,bouncy castle,princesses(for Tyler!),food drinks , we even have owls this year .

Each family has become incredibly special to us , I think that this is what makes the Trust different to other charities, we are not a business, we are small , local , and can adapt quickly to meet the needs of local families.

It has been an honour and a privilege to get to know so many amazingly courageous families. I am always especially touched at the journey some families make to attend. Shawn,Blake and family had a 3 hr journey last year but are still coming again, cant wait to see them.

One of the families that were due to attend unfortunately cant due to their brave warriors decline in health. I was so very sad when her mum text to let me know, the family are always in my mind,thoughts and prayers, their story is so similar to ours I think about them often.

I wish that there was more that I could do to help , when a child is this ill there can be no understanding unless you have been through it . Maybe we can take a small party to them if they cant get to us.

One of the aims of the Trust is to set up some sort of parental support group to allow parents to be with other's who understand what they are going through.

I am so thrilled as well that my Sis and family are coming down just for the day, its 7 hours each way , thanks guys !

A Belated Birthday Present to Me!

As many of you know I turned the big 50 earlier this year as did my best friend Michelle. For a long time we had promised ourselves that when we reached this milestone we would have a spa weekend . I have spent the last few years collecting for this in my pamper pot and it has finally paid off , we are going next week, simply cant wait.

I keep trying to tell myself that we don't look that different from the pics above, Michelle?

My wonderful hubby is having a week at home to decorate, I am sure that he and Tyler will have a whale of a time .

It does feel a little strange going away without them but I think its just what the Dr ordered.

Too Much Thinking

As we approach the fun day , I cant help think about where we were this time last year. None of the families would have known it but Tyler had delayed his own life saving surgery to host the event. He was absolutely amazing, smiling laughing and chatting to everyone . I think that I just plastered on some make up and kept busy .

It was probably the longest couple of weeks of my life, we crossed that bridge and I try incredibly hard to keep things in the day . Sometimes though there are nights when I am still almost panicking at 4 am in the morning because I cant get out of my head what he had to go through and what he now has to contend with . When you have been through something like this it changes you forever.

That's not to say that you don't have good times but certainly for me I know that I am a different person to the one that I was .

Support for Tyler

It is due to Tyler#s immense courage and bravery that I find it frustrating that it is so hard to get him the help that he needs . He does so much for other people and I simply wish with all my heart that I could give him what he needs yesterday . It will be so amazing when I can ring the council and say we have the money !

My one worry is just how long it will take once the call is made. If we could manage without the councils help it would be so much easier and flexible but as it stands we simply don't have that luxury.

It is for this reason that it means so much when people step in and say I'll help . There are simply too many to mention at present but it is a lovely feeling to know that people care and are willing to help .

There is loads to do so if anyone is bored and has some spare time ................

Ben

I have to mention just how proud I am of Ben, it has be fantastic to have him home over the summer, but he has now returned to his 2nd year at Uni. He is so grown up to be a son to be really proud of , hard working ,dedicated and simply brilliant. It was great to go our for a farewell curry with him and Georgina during the week , and I have even managed to sneak in a lunch date in with him . I have to admit that I will miss him like mad though.

On that cheery note, the fun day awaits, as ever please do get in touch with any thoughts or suggestions.

janice.ellis2@btinternet.com

https://www.gofundme.com/Tylersaccomodationhttps://www.spiritfm.net/features/together-for-tyler/full-story.phphttps://janiceell.blogspot.co.uk/http://www.bognor.co.uk/news/video-together-for-tyler-campaign-launched-1-8085080

Wednesday 6 September 2017

Together For Tyler

* Southampton done , Good News, Not So Good News and Another Busy Week

Trip To Southampton

Our trip this time was to see the tremor surgeon and I did message the team to see if it was worth attending as the next MRI is not far away. We were told that it was important so off we trotted . As many of you know I am not used to driving too far any more , but I pleasantly surprised my self by getting there ok. The only problem came as we reached the hospital, they are having their car park redone and part of it was closed, it is not an exaggeration to say that the Que was a mile long.
I duly followed the signs for the blue badge spaces only to get to the front of the hospital to be told that you could only drop off there. I politely asked where we should park and was told that I had to get back in the Que, this was completely contrary to their signs and the Que had now doubled in size. Realising that we simply didn't have time to reque we parked on the road and set off with the wheelchair . I cant thank Karen and Bonnie enough for meeting us , Bonnie sat on Tyler's lap and we just about reached the clinic on time. Ironically it was of course running 45 mins late.

Once we finally got in to see the surgeon he said that he had taken things as far as he could and that everything else had to be managed ny other teams !!! 5 mins at most. I did ask one question though that may be of use, there is some research being undertaken in to helping people walk who are in Tyler's position. Its not on the NHS but is an area that we have to look into . Boston have queries some of the MRI imaging so we basically are on hold until after the next MRI.
I was pleased to get home at a decent time though, as we had a special night out planned.

A Date with Martin Kemp

As many of you know Fearne is a great supporter of Tyler, she is also friends with Martin Kemp. Martin himself knows what it is like to live with a brain tumour and has kindly written to Tyler in the past to support him. When we found out he was coming to Bognor he organised tickets for us and set aside some time pre show to meet Tyler. This was incredibly kind of him at such a busy time but also very encouraging for Tyler to meet someone who has come through the other side and has a fantastic career. A lovely kind , caring and down to earth man, he said that Tyler had the most amazing fan in Fearne who always talks about him.

During the show Martin refer ed to Tyler as a young man going through a brain tumour battle and he received the most amazing round of applause. Thank you Martin for fitting us in to your busy schedule and for caring .

I have been thinking about the fact that my hubby and I are coming up to our 10th wedding anniversary and what we could do to celebrate. When I mentioned this to him , he said that I have never mentioned him in one of my blogs. I thought that this couldn't possibly be true, but it would appear that it is . I believe the reason behind this is that I think of us as one unit , Craig is and always has been my rock ,but maybe I don't always express that very well. So hubby of mine I love you forever and a day .

A surprising phone call from Spirit FM

I was busy working on some fundriaising when I got a call from Spirit FM. The lovely India started talking about the local hero awards and I thought that she was telling me that Tyler had won an award, which I thought was fantastic. It was only when she carried on talking that I realised that she meant I had won an award !!!! I have never won anything in my life, my lovely sister and amazing friend Lisa had nominated me for parent of the year and I won!!!!

I am absolutely gobsmacked and delighted that they would think of me and do this . It will be the perfect way to celebrate our 10th wedding anniversary, now how much weight can I loose, I need a new dress and hair do ....................

But thank you guys for giving me a boost that I didn't even realise that I needed .

Fundraising

The fund raising is slowly gathering pace and I will put more about that in my next blog, but there will be lots of things going on , so watch this space . A big thank you to the Apuldrum ladies who held a sponsored walk , I look forward to meeting you all. They are also holding a funday at Barnham Community Hall on Oct 28th so please do come and say hello.

We are working on a Halloween party to coincide with Tony's last 10 k race at the windmill in Barnham on 30th Oct.

I think it would be great to see Stuart and Stephen go head to head on apple bobbing or eating a cake off string. There s likely to be a fancy dress comp and other activities going on so do keep the date .

If you have any fund raising ideas please do get in touch with Stuart at Spirit or Stepehen at the Observer, or indeed myself

janice,ellis2@btinternet.com.

If you can hold a sponsored event, dress in green, quiz ,bake off,Halloween party,coffee morning etc, please do let us know , you can also make a donation via the link below.

Red Tape

Red tape is still causing us issues , everything was meant to be in place for Tyler to return to school part time in Sept and of course nothing is in place . I have tried and tried to get this organised but sometimes you just have to let the authorities do what they need to . It has been mentioned to me that my blogs can be negative so I am trying to think of ways to highlight these points without sounding negative , any ideas? Because sometimes I want to scream why on earth didn't you get drop kerbs in over the summer holidays or recruit a TA then!!!
So please give me some feedback, do I tell it as it is or do I try to keep it positive.

Thank You

I would like to say a huge thank you to everyone who has supported us to date. I will get letters out as soon as I can but in the meantime please accept our heartflet thanks from here.

If you work for a local firm perhaps you could forward this blog onto your employer.