I have this photo of my daughter, Lucy, in the bath. She is standing there with her goggles on, because she loved to wear goggles in the bath and stick her face under the water and blow bubbles. In the photo she has such a lovely expression on her face, almost a little glum or sulky, as if she’s fed up with me taking photos. I can’t stop looking at it. It’s like I want to touch the photo, to climb inside it, to be back in that bathroom with her again. Anyway, sorry, this message has been all over the place. 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
