I know I’m not the most visibly active participant of our campaign, and most of the time, I simply don’t have any words! It’s difficult to say anything, or express how you feel when part of your life, your reason for being alive, a piece of your heart, has been crushed, torn apart, never to be the same again.
Everything seems so much worse at night, everyone at home is in bed and it makes you feel that much more isolated and alone.
So here we sit, in intensive care where our baby is fighting the biggest fight of her and probably all of our lives and I have to admit, that some days, the battle seems hopeless, impossible even? How can this beautiful little thing be going through something so devastatingly shit!! Even now, being where we are, doing what we’ve done, I can’t believe this is happening!
It’s hard staying positive all the time, especially when the treatment is working so well that the tumour is becoming swollen with the amount of destruction, but because her tumour was so big to begin with, the extra swelling is making her decline severely as if she was in progression! We are having to spend so much time in intensive care that the treatment fund is dwindling away, faster than it can be raised!
I question things all the time, thinking, have we done the right thing?! But then as I look at her, she looks like she’s listening to every word I say, even though I’m not talking, almost like she can hear my worry and feel my pain!
It’s at that moment that I get an email, an email that made what I was writing go in a very different direction…. At first it felt like I was writing in despair, in grief? But since this all began, when I’ve felt at my lowest, like there seemed to be very little hope, something happens, something that slaps me in the face and snaps me out of it!
This time is was an email with an attached letter from our local MP, who told us about a meeting they had with the Under Secretary of State for Health Lord O’Shaughnessy. It said that they had stressed the urgency for aid in these desperate times and to try and spur the government into action! They have asked that the government help contribute to the treatment expenses in our fight against DIPG! If they decide that there is something they can do to help it could change the outlook for so many children!! I can tell you that this email was a very welcome ray of light at a dark time!
Whatever happens with their decision I’ll leave you with this,
Without all of you, none of this would be possible, there are no words powerful enough to express our gratitude for what you are doing or to tell you how very proud we are of each and every one of you!
From the bottom of our hearts, thank you!!