Its off to Southampton again

I have started this blog with a few photo's as I think that it is key to remember in all of this that Tyler is a young man who loves life, who has a family who love him and is the bravest person that I know. I hope for those of you that don't know him that the pictures allow his personality to shine through. This is a very stressful time for us as Tyler goes back into hospital today for a rare procedure. I have watched him over the last few days coming to terms with the process and he really is the most courageous young man, no moaning or grumbling from him, I don't know any adults who could manage as well as he does. He always has a laugh and a joke for when the nurses visit but be warned if you meet him you will learn an awful lot about life savers , Fearne can testify to that !

In the last few days I have been trying to sort out some of the red tape for when Tyler comes out of hospital. I think that my hair is now going grey and I certainly have no finger nails left! We hope to get Tyler into our local children's hospice as they have a pool and this would be really really beneficial to his rehab. My sister and I went along for a meeting some weeks ago and met with the nurse in charge and the CEO. Since then it would appear that nothing has happened, after 2 weeks they wrote and asked for a form which I promptly emailed back to both parties. I received an acknowledgment from one of them, only then to yesterday get a letter asking me for it !! This is incredibly frustrating at a time that we could really do with out it  , but apart from anything Tyler will need that support. So one issue dealt with I moved onto the arm chair so that we can get the bed out of the lounge, apparently its still with panel. I asked if anyone could tell me when they were sitting or if I could contact them but that was a big no. I think that we have been trying to get this chair for about 8 months now , and don't even get me started on the electric wheelchair. We did have some very nice people come round to look at the house from the council to look at making a downstairs flat for Tyler with a wash room. He explained that everyone is governed by different acts which complicates thing s, if Universal Credit can join up benefits, why cant these acts be joined up. The grant that we will get will not be anywhere near enough to pay for the conversion so we are likely to need to raise appx £20000, so if anyone has any fundraising ideas please do get in touch. I have tried to keep my blog relatively constructive and to share some of our experiences in the hope that others coming behind us may not have to go through what we have.

I hope that no other parent ever has to be told that your child has a brain tumour and may not live. Unfortunately about 400-500 children get that news each year and that is without the other cancers and life threatening illnesses. When you are given this news your heart breaks into a million pieces and whatever happens it never quite goes back together. To watch your child fight and suffer for years is unbearably painful, but as a parent you offer the care and love and support that keeps you going. What is so hard is when you cant get them the help that they need, you know its there but you just cant get it or you have months and months of assessments and paperwork to contend with. I am highlighting this not just in the hope that someone may help but that for all the children that come after Tyler there may be a process in place. Our brave children are amazing and deserve to have the chance of a normal life after all they have contended with.

I am not sure that I will have internet when we are in hospital but I will update as soon as possible.

Tyler loves cards if you are able to send one please do so to :

D Neuro Southampton University Hospital Tremona Rd, Southampton Hants.