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
Tyler's bravery and kindness is outstanding. I hope you have a wonderful time away. Happy 50th!!! Shared! I have PM'd you a while back on messenger. If you need anyone to set up the Family support group please let me know. X
ReplyDeleteJo FitzGerald