So this week Louis’s mask was successfully made and then he was woken up to have a CT scan with his mask on, this then enables them to see if he’s going to be able to lay still with mask and co operate for treatment, so proud to say he nailed it! We were all on a high and me and Darren pretty relieved to say the least. We headed straight off for the huge treat, massive booster, long overdue bit of fun, and had a fabulous week at Disney, we were able to visit Magic Kingdom, Universal Studios, Hollywood Studios, Animal Kingdom and SeaWorld!! We also received a permit arranged for us by the Compassionate Partners friends make a wish team who work with the hospital and it allowed us to fast pass everything at Disney and to the front of every queue at Universal! It truly made it even more special and such a treat, especially as Tayla was too small for quite a bit so made the waiting around so much more bearable! These memories will hopefully outweigh the not so good ones I’m sure we are about to face, but will stay with us forever, we are now home to Jacksonville, washing and ironing and a big food shop for me, nothing new there, hearing, eyes and IQ tests for Louis tomorrow ready to start treatment Thursday. I will be glad once the first session is done and I know he is able to do it without sedation. Fingers crossed for Thursday.
Louis’s Go Fund Me page is going to soon close, we will update Louis’s Journey through www.louisjourney.com for those who wish to check in and see how he’s getting on.
You are all forever in our hearts always, I know I keep saying it but don’t know what else to say. Thank you all for making it that bit easier when life gets so hard.
If you do wish to continue to make a difference then please help support the www.thebraintumourcharity.org
Brain tumours are the biggest killers in children and adults under 40 with the smallest dedicated budget. 25 people are diagnosed with a brain tumour everyday, as you are aware Louis lost his whole pituitary gland, needs daily meds for life, plus growth hormone, possible help having children, risk of having an adrenal crisis leading to death, more risk of stroke, loss of some vision, risk of further loss of vision even going blind and deaf from where tumour was situated. He has Diabetes Insipidus so cant control fluid in or out without meds which again carries its own risks and has to have sodium levels tested and checked in his bloods, and not forgetting left with scars and possible short term memory loss and god knows what else from the radiation! That’s Benign!! Benign is not fine and every tumour in the brain is treated just the same as cancer.
A cure Can’t Wait!