I’ve been feeling stressed, restless, not sleeping, my metabolism running on overdrive. I was thinking it’s my job, which is exciting but stressful at the moment. Or maybe it’s the glimmer of something new on the horizon that would require a leap of faith and trust from me. Maybe it’s partly those things, but for some reason it’s taken me a while (as it always does, as if it doesn’t come round annually) to figure out it’s the time of the year.
The sweet nostalgia of summer heat fading into the crisper mornings of autumn, the end of long golden evenings, the last of the summer flowers and monarch butterflies, the feijoas ripening on the tree. The weeks leading up to Zoe’s birthday. The weeks when in 2009, just before her third birthday, we were waiting for a diagnosis.
My body knew before my mind did. We were standing talking to Zoe’s dad while he was on the computer when I ran my hand up Zoe’s neck under her hair, a cute Dora the Explorer bob. I heard an animal moan come out of my mouth before my brain confirmed what I felt, a huge egg sized lump on her neck. I dropped to my knees to see and confirm it. I really believe I knew in those moments before I could even articulate it. I just had to get someone to believe me.
A trip to the after hours medical centre got us fobbed off with the diagnosis of an infected lymph node from a virus, despite no symptoms of a virus or other signs of infection. A trip to our GP at least got us some blood tests and when those came back normal, a referral to a head and neck specialist. Begging got the waiting time down to two weeks. By the time we got there I was feeling frantic. I was sure it had grown more towards her shoulder while we waited.
One look at the lump it on a Friday afternoon and our specialist had booked extra surgery time on Tuesday for a biospy of her nasopharynx area, the lymph node and a tonsil. I was trembling and crying on the phone to our health insurer. Zoe was playing with the toys in the waiting room.
Before they took Zoe into surgery there were three things on our surgeon’s shortlist. One of them was a cancer with a long name. Around 6pm the following day we had our diagnosis.
Friday: Introduction to our oncologist and the world of childhood cancer, a CT Scan and an MRI. The second of more than 50 general anaesthetics. An assurance from our oncologist that we did nothing to cause this. Tears from me and I realise that my secret belief is that I did cause this by being unhappy in my marriage.
Saturday: Zoe’s third birthday and a party as planned. A stunning warm autumn day, friends, a fairy princess, a butterfly cake. I am running on pure adrenaline. I have the constant taste of fear foaming in my mouth. In the early evening we take Zoe and her cousin to the beach. They strip down to their underwear and run into and out of the water, warming themselves on the rock wall in between splashing. I keep telling Zoe to be careful not to get her biopsy wound wet. Chemo will leave her unable to fight infection. Watching her running and squealing and giggling in delight, it is hard to believe in the evil thing that is growing in her body.
Monday: The MRI confirms Zoe’s tumour reaches from the base of her brain, down into her shoulder, her entire nasopharynx area and has no clear margins. Surgery is not an option. 9 months of chemo, six weeks of radiation. At this point we are asked if we wanted to know the odds. I say no. Our oncologist replies that odds are meaningless in any one case. They are one, or they are 0. You win. Or you lose.
Tuesday: Bone scan to see if the cancer has spread to Zoe’s bones. She is conscious, strapped tightly into a kind of stretcher while she moves slowly under the machine. She stays still as she knows she has to but tears of fear stream down the side of her face.
Sometime in this week she tells me “the bone in my neck hurts” the first indication she has even been aware of it. How long has it hurt? Nearly three year olds aren’t very good at articulating this stuff.
Wednesday: Zoe’s oncologist attempts to get her on the acute list for surgery to put in a port-a-cath to deliver chemo. Around 2pm I hear him on the phone trying to talk his way into a slot, telling them how urgently they need to start the chemo. It doesn’t work.
Thursday: Surgery as scheduled, biopsy of the lymph note on the other side of her neck, bone marrow biopsy, a port-a-cath inserted in her chest with a line that runs into a vein in her neck so the chemo will be delivered efficiently to her heart to pump around her body. An NG tube into her stomach for feeds, as they anticipate she will begin to lose weight. They wait the bare minimum time after surgery they dare to begin her first dose of chemo, not waiting for a regular clinic appointment.
We have moved on. Zoe is no longer at Dx. Now she is On Treatment and we are part of the Starship Ward 27 family for the rest of Zoe’s life.
About one in three hundred children and teens will be diagnosed with cancer by the age of 20. This is considered rare, but consider the number of kids in your local primary school and imagine how many of them it will affect. You are probably going to know at least one child with cancer in your lifetime. In my experience of talking to oncology families, it is not uncommon for symptoms to initially be attributed to something else. Click here for a list of symptoms to assist with early diagnosis.
Part of this post is similar to one I wrote on a blog I kept through Zoe’s treatment, that has since been lost.