We Own the Sky(95)

Probably not making much sense. Take care.

I have downloaded all of the messages to Nev from  Hope’s Place and organized them in a database. That way it is easier to go through them all, by location, by the year they were sent. I cannot exactly say why I am reading them.

I know I am looking for something, but what? An explanation, as to how I fell for Nev, how I so readily believed Dr. Sladkovsky?

I recognize some of the names from  Hope’s Place. Thomas Banson. John Stevens. Murial Stenovic. Priya Davidov. It is quickly apparent that most of their children are now dead. I read their obituaries in local newspapers, about their love for Lego, their favorite fluffy slippers, their beloved Leicester City FC.

There are eulogies on Facebook, shared hundreds of times, that speak of their children’s resolve, their grace and humor right up until the end.

I was never interested in the people on  Hope’s Place. I did not care about their lives. I just read their posts to find out what treatments their children had received and how that might apply to Jack. I had no interest in the off-topic threads, their weekend plans and road trips, the word-association games they sometimes played.

I think I even looked down on them. Their bake sales and hashtags. The

dolphin swimmers, I used to call them. The people who talked about being

blessed, who praised every sunrise, who tried to convince the world—and

themselves—that their child’s cancer was really a gift.

Now I feel like I want to know them, all these desperate parents who poured their hearts out to Nev. So I read their stories. The forensics of how this came to be: the loss of appetite, the dizzy spells at school, how at first they thought it was nothing, just too much football on the weekend. In meticulous detail, as if they were testifying in court, I read about the day their child was diagnosed: whether the sun was shining, what the traffic was like that day, the smell of the receptionist’s perfume, the feel of their clammy skin on the leather seats in the waiting room.

I read about their family holidays, the jobs they loved and lived for, their trips to the cabin on the lake. The things they did with their children, the days out at Peppa Pig World, the superhero birthday parties. I read about their hopes—a clinical trial, Vitamin-C infusions—and how quickly they were dashed. I read about their loss of faith, how they cursed a God that could allow this to happen.

They talked a lot about the “before.” Before diagnosis. Before this all

happened. Before Jamie got ill. Because now life was delineated differently. It was no longer “before we got married,” or “before Jamie was born.” There was now a new before and a new after. And I noticed just how much they needed to talk about this before, to resurrect this old life, because that was the world they wanted to return to. I understood why they told Nev how much they used to have —the football tournaments, the canal-boat holidays—because then he might understand just how much they had to lose.

There was another reason why they told Nev everything. Because sometimes

telling your story is the only way to stay alive.

Re: Newly diagnosed

by  johnkelly?  Mon  Jun  5,  2017  8:05  am  Hello  this  has  all  happened  so quickly.  We  have  just  received  the  devastating  news  that  our  beloved daughter has a tumor on her brain stem. They are still not sure what kind and we are in shock. She is only ten years old and is the captain of her school soccer team.

We haven’t told any of our family yet and we have to wait to hear what

the doctors say but we wanted to ask if anyone has any experience with

tumors  on  the  brain  stem?  What  types  of  tumors  do  these  tend  to  be?

Can  she  still  be  cured?  It’s  very  difficult  trying  to  find  answers  on  this.

Can anyone help us please?

John Kelly

Re: Newly diagnosed

by Rob? Mon Jun 5, 2017 8:30 am Dear John,

So sorry that you’re joining the club that no one wants to join. In answer to one of your questions, only pathology would truly show the tumor type and  grade.  I’m  afraid  I  can’t  help  you  on  your  particular  question  about the brain stem, but I am sure that others will weigh in.

Please,  please,  try  not  to  panic  until  you  know  exactly  what  you’re dealing with. (I know that’s easier said than done). And please try to stay off Google. There are many different types of tumors—and a lot of them are  curable  in  children.  Even  in  just  the  last  few  years,  treatments  for brain tumors have improved vastly. There is so much to be hopeful about.

Please let me know if I can help in any way and feel free to PM me any

time on the forum if you want to talk. Thinking of you.

Rob

Re: Newly diagnosed

by motherofdavid? Mon Jun 5, 2017 10:36 am Don’t really know how to

start this but here goes. Our little boy James was diagnosed just over a

month  ago  with  Grade  3  Astrocytoma  and  we  had  some  hope  after

diagnosis,  some  stories  from  this  forum  actually,  and  there  was  this clinical  trial  that  James  might  have  qualified  for,  but  none  of  it  has worked, nothing, and now they’re thinking of stopping treatment because they’re saying there’s nothing else they can do.