Sunday May 23
Nick’s (white blood count) WBC is holding at 0.29 (normal is 4,500). Today I walk down to VGH (Vancouver General Hospital) and take a taxi back to BCCH (BC Children’s Hospital) with my precious cargo of white blood cells. It feels amazing to be doing something that may help our son.
I pass them through the sliding window at the lab so they can prepare them for infusion into Nicholas. It’s someone at the window I haven’t seen before so I say, “Please hurry. He needs them as soon as possible.” She takes the bag from me and replies, “We’ll get them upstairs when we can,” then she shuts the window. I look at the frosted glass and think ‘you would run if those cells were for your kid.’
The cell separator unit at VGH tells us the cells are fragile and don’t live very long. The sooner they are infused into Nicholas the more good they will do him/ a stronger frontline to battle the fungus. I go up to Nicholas and with his Dad pace inside the room waiting, yesterday we waited for hours, for the cells to arrive from the lab.
“What the hell is taking them so long?!” FH (Nick’s dad) is freaking out. For the second time he strides to the nursing station. “Call the lab now! Please call the lab!” He begs of the people there.
I’m reminded of actress Shirley MacLaine in one of my favorite movies “Terms of Endearment.” She plays the mother of a daughter dying of cancer and in pain. In one scene she throws a fit and frantically runs around the nursing station counter, banging her hands, yelling “Now! She needs her pain shot now!” until a nurse goes to help.
As a parent I understand how crazy she became. Click here to watch the 38 second clip of Terms of Endearment.
Tuesday May 25
FH gave his white cells yesterday. Today was the third dose of my wicked granulocytes. Each morning we both take the (granulocyte colony stimulating factor) GCFS shot deep inside the big muscle of a thigh. It is terribly expensive, over $500 a day. Our community at home continues to rally behind us with fundraisers. I believe we would lose our house otherwise.
I’m not having any side effects from the injection, but FH’s bones ache. He says the pain keeps him awake at night, so he sits in the dark room looking out the window. I tell him it’s more than the shot that keeps him awake.
I’m going home on Thursday for my mother’s funeral. Then FH will go every day to VGH.
Wednesday May 26
Today is the fourth dose of my spectacular granulocytes.
This is Day 69 for Nick without his own counts. The three of us hover over the paper work recording Nick’s blood counts. Along with my heart they have dropped to a measly 0.1 WBC. His sweet little cheeks are bright with fever.
FH is livid. I can hear him, in fact everyone on the whole ward can hear him. “Call them!” His nose is pushed into a prominent oncology doctor’s face. “Do it now and find out for yourself!” He demands.
He says BCCH needs to call the cell separator unit at VGH and ask about the shelf life of these cells we have been sweating over – cells that may be Nicholas’ chance at survival.
Within the hour a nurse is hanging a bag of my granulocytes beside Nicholas. Both FH and I thank her. We’ve never been rude to the nurses.
A few hours later the doctor that FH yelled at visits Nick’s room.
He says that VGH told him the same thing we knew about the cells short survival rate. He says he “doesn’t fully agree,” but when we glare at him he hastens to add that he has spoken to the lab downstairs and they have said they will prepare the cells for infusion in a timely matter.
“One hour,” states FH.
“I’m not sure they can do that.” The doctor sputters.
“Just like VGH said,” FH repeats, “The cells need to be upstairs in one hour.”
“We will do our best.” The doctor is clearly happy to leave the room.
For the rest of the day Nick beams. And for days afterward to anyone who hasn’t already heard the story Nicholas retells the tale of “…my Dad fighting for me.”