I hang up the phone after FH’s call, go into the bathroom and throw up.
“I’m bringing Nick home tonight.” FH said.
“What did you tell him?”
“Nothing. He thinks we’re taking a break. I can’t tell him Sue.”
“How is he?”
“He’s over the moon to be coming home.”
It’s been seven months since Nick has been home.
They arrive from Vancouver in the wee hours of the morning. Nick is drowsy but his smile is huge. He gets onto his knees and the three dogs, their whole bodies wagging, lick and snuffle their noses all over him, sneezing wildly. They say dogs can smell cancer. We bundle Nick into his own bed and beside him his cat is purring like a diesel engine.
“Mummy, it’s so good to be home.” He falls asleep immediately.
FH and I hold each other and cry. In all my dreams of bringing Nicholas home I never thought it would be like this. We talk until daylight creeps in and throws dim shadows on the walls and birds begin sleepy songs. FH tells me B.C. Children’s Hospital offered a second phase drug that has had some success for solid tumors but never with pediatric leukemia patients. It won’t cure him, but it will buy us a little time.
Saturday and Sunday August 21 & 22
My little family is complete when Frankie comes home from visiting my sister in Alberta. But this reality is not the dream I’ve held onto these last few months. My youngest son is not the child who left in January. He was a round and pink cheeked young lad who couldn’t possibly have cancer, and I believed that more tests would show there was a mistake and he was going to be fine.
In the kitchen my son’s voices drift in through the window. I know Frankie’s quick footfalls on the steps and across the porch. Now comes Nick, his gait slow and deliberate, then hesitating, a rest before shuffling across the porch. This is not at all what I pictured.
Friends and family gather around us. Some haven’t seen Nicholas since before he was diagnosed. They gently hug his frail body, stroke a pale thin chin and tousle the soft new hair on his head. No one completely hides the shock from their faces. But he’s still the same Nick, candid about the last few months, telling his stories and interested in hearing about everyone else.
My mind can’t grasp that BC Children’s Hospital is stopping treatment. I howl NO! What happened? Were we that dense we didn’t see this coming? There was never any indication that B.C.C.H. would give up on our boy. As it became obvious this last round of chemo had failed I asked, “What next?” B.C.C.H. had assured me there were other options. Then, BOOM a doctor we barely know tells us Nick will not get a remission and he is going to die.
We phone the Ronald McDonald House. We speak with everyone and ask what should we be doing? I write and rewrite a letter to Dr. Paul, madly typing, my fingers flying over the keys, and then holding down the back space key erasing paragraphs of uncensored anger and grief. We fax it on Monday morning.
Monday, August 23, 1999
Dear Dr. Paul,
Please be advised that we have decided to seek a second opinion on Nicholas’ disease. We have spoken with Dr. Kent who preceded you and although he also shares your opinion, he told us that you would be very familiar with Oncologists in the Children’s Cancer Group and cell slides could be sent out to other hospitals. We have heard that St. Jude in Tennessee may have some answers.
I cannot stress to you how important it is to us that every effort is made to contact all hospitals treating children with cancer. If there are hospitals outside the Children’s Cancer Group that you will not contact, but there is the slightest chance that they may be willing to help us, please let us know how to go about doing this for ourselves.
We believe that time is (obviously) of the essence in this matter and we did not want to wait until 1p.m. Wednesday to let you know of this decision. If you need a verbal consent or a form signed or you wish to speak with us please do not hesitate to call us at the above number and/or fax us the forms we need to sign at the above number.
I hope we are clear that no stone will be unturned in our search for help. When we return to BCCH on Wednesday we look forward to hearing that the search is well under way or we will have heard from you here at our home giving us directions as how to begin. Considering what is at stake, I am sure you will forgive us for the under – lying tones of this letter.
The family of Nicholas Beresford
By the end of the day Nicholas’ file is sent to Alberta Children’s Hospital with our request that he be accepted as a patient for their clinical trials with experimental therapy, or “second phase treatment.”