We Own the Sky(37)

She slept like that once, our backs against the promenade on Brighton beach.

A dirty weekend in a guesthouse near the sea. Still so new to each other, we spent most of our time in bed that weekend. It had started to get dark when we dragged ourselves out to eat fish ’n’ chips and cotton candy on Palace Pier.

Afterward, we went clubbing, some cheesy indie night where we danced to The La’s and the Happy Mondays.

That night, we were fearless on the dance floor, without shame, our hands everywhere, and it was as if we were back in the guesthouse, tingling with lust, our bodies damp with each other. We walked out at 4:00 a.m., the air chilling the sweat on our backs, laughing and stumbling, drawn back to the sea.

Anna wanted to watch the sunrise, so we went and sat on the beach and talked for a while, about London, where we might live. We joked—the way new couples do—about the kids we would have one day.

Just as the sun was coming up, Anna began to fall asleep and rested her head in my lap. Some things you never forget. The waves gently shuffling the pebbles; the birds awakened by the red dawn; the warm, salty wind. Anna was happily oblivious to it all. I watched her sleeping, locked into our bliss, our endless summer, her chest rising and falling in perfect time with the sea.

  *

That evening, I logged back in to  Hope’s Place. There were already fifteen responses to my post.

Re: Can anyone help us?

by dxd576? Wed May 21, 2014 10:34 am

I cant help you with your particular condition or recommend any surgical

stuff or anything but we are now eighteen months out from our daughter’s

diagnosis.  We  have  been  juicing  and  our  little  one  (and  all  the  family) have moved to an all vegan all raw diet. While we can’t say what is round the corner our little Jade is doing well and we know that is to do with the changes  to  our  diet  and  less  with  the  drugs  that  the  doctors  have  been giving her.

Re: Can anyone help us?

by Chemoforlifer? Wed May 21, 2014 10:58 am

Rob,

Sorry you’re dealing with all of this. It must have come as quite a shock.

While  of  course  it  is  a  brain  tumor  (and  no  one  likes  to  hear  those  two words),  do  take  comfort  from  the  fact  that  PXA  is  a  very  treatable  and survivable cancer.

(Just  FYI,  as  you’re  new  here.  I  lost  my  only  daughter,  Hope,  to glioblastoma  multiforme  five  years  ago  when  she  was  eight  years  old.  I started  this  forum  in  her  memory  to  try  to  help  other  people.  I  am  a research scientist by trade.) So, regarding concrete advice. I would highly recommend, if he hasn’t already, that your son get genetically tested. Even though you are looking at  surgical  resection  as  a  cure,  it’s  always  good  to  have  things  in  the armory, in the unlikely event the tumor did recur.

Please feel free to ask me anything. I am always here to help.

Best Wishes,

Chemoforlifer

Admin

Re: Can anyone help us?

by Trustingod? Wed May 21, 2014 11:44 am

Sorry to hear this Rob, although, as you say, there is much to be hopeful about. We are in a similar position, although our baby was diagnosed a few months ago. We have found that our faith has been such a comfort to

us  in  these  difficult  times.  May  God  put  his  healing  hands  on  your  little boy. I will be praying for you and your family.

I stopped reading. These people weren’t us. They were the desperate parents you read about in magazines, who watched as their children slipped away. We had nothing in common, because Jack was so alive; the doctor had said he would be cured. Suddenly I needed to see him, to touch him, and recently these moments had become more frequent and painful, like crippling attacks of gout.

I was just about to close my laptop and go downstairs when a little mail icon pinged to let me know I had received a private message through the forum. It was from someone called Nev.

Subject: Hello

Sent: Wed May 21, 2014 10:16 pm

From: Nev

Recipient: Rob

Hello,  Rob.  I’m  sorry  to  hear  about  Jack’s  situation,  although  it  sounds like you have a huge amount to be hopeful about.

I wanted to tell you my story, in case things don’t work out as planned.

My son Josh was diagnosed with glioblastoma three years ago, when he

was  six.  The  doctors  basically  wrote  him  off.  After  they  removed  the tumor, they said there was nothing they could do, that it would definitely grow back and all they could offer was chemo and radiation as palliative care.

That  was  when  I  found  out  about  Dr.  Sladkovsky.  Before  you  stop reading, hear me out. This is a legitimate clinic based in Prague. It’s not a cactus  juice  for  a  thousand  pounds  a  pop  cancer  clinic.  This  is  cutting edge stuff and utilizes all the latest treatments, in particular what’s called immuno-engineering.