This picture was taken seconds before I found out my sweet daughter had a “space occupying lesion” – a brain tumour. I was physically shaking, sick to my stomach, my intestines curling and whirling because I already knew what they were going to tell me.
“How did you find out she had a brain tumour?”
This is often the first, almost panicked, question people ask me when I tell them that my healthy, popular, intelligent little girl was so suddenly diagnosed with a brain tumour, a Craniopharyngioma over the Christmas holidays.
My answer could be long, there is so much to say: that I’d had a deepening suspicion that something wasn’t ‘right’ for a while. That I’d noticed odd things about her (that now seem to blatantly point to endocrine – hormonal – dysfunction, and I hate myself for not picking up on it) for a year. My first signal was that I’d noticed her hair seemed to have stopped growing back in March time. She also seemed much more chubby than her peers, strange considering she primarily ate an exceptionally healthy Vegan diet with no processed food. If you ask her what her favourite food is, she’ll tell you honestly that it’s brussells sprouts. The deal breaker that something was wrong with her occurred just before Christmas 2013. On a general trip to our GP to check her ears which were inflamed again, I asked for a height-weight. She was in the 75th percentile for her weight and 14th for her height. Then I got home from the appointment and discussed this height-weight discrepancy with my husband. We were in the swimming pool, I can remember the conversation clearly and pieces of the puzzle began to slot into place; growing fatigue, slowed growth, slowed hair growth, dry skin, increased body weight, increased thirst: Wow. We were hit with a slamming realization, how could we have not picked up on this before! We thought she had autoimmune hypothyroidism with an adrenal insufficiency. I was right, but also wrong… her hormone dysfunction wasn’t caused by an autoimmune disease but by a tumour. Not knowing this yet of course, we booked an appointment with an Endocrinologist immediately.
Then there is the short answer: ‘headache’. Hana had suffered from mild headaches her whole life, that is true. I’d even been to see our paediatrician about them when she was three (she was almost six when the tumour was diagnosed. The tumour, by way would have most likely been growing back then). The headaches were very mild and often seemed related to her chronic ear infections or tiredness. I look back over the years and struggle with myself for not pushing for a CT, no matter how ridiculous I would have appeared. Munchausen by proxy? But it was a powerful, three day intense headache with light sensitivity (photophobia) that was the deciding factor for me and suddenly the possibility that her hypothyroidism might be caused by something other than an autoimmune disease began to settle in my mind. The night before her CT scan I sat in the dark alone, crying for two solid hours. That evening I knew what we were about to face. I knew the scan would show a tumour, and I pleaded to the starry night sky, that out of all the tumour possibilities, it would be a Craniopharyngioma. Don’t get me wrong, a Craniopharyngioma is still a horrid tumour, it often reoccurs and causes a myriad of life long health issues, some that require life long medication and other health issues that are intractable and resistant to treatment. More on that another time, we are knee deep in facing these right now.
The next morning I headed straight to the hospital without an appointment for a CT, I had decided that I would simply present at the reception and insist on one. When they hovered around the computer images in the room adjacent to the scanner I knew that they had found something. Then they asked me to go to the private waiting room to wait for the consultant and my suspicions were confirmed. I texted my mum in the UK: “Been told to wait for consultant. Not looking good.”
The consultant was relieved that I was a nurse and understood his medical terminology, it’s much easier to say “We’ve found a large mass” rather than, “I’m sorry to tell you this, but your daughter has a brain tumour. And it’s massive. Giant, actually.” My first question was “Where is it?” When the answer was that it was above the pituitary gland and that it was most likely a Craniopharyngioma, I finished his sentence for him. Relieved. Terrified. Dazed. This can’t be happening. This isn’t real.
The ‘giant’ tumour had calcified regions that extended down to the region above the pons in the brainstem, stretching up past the hypothalamus ending up with a large cystic element that was blocking one of her ventricles, causing hydrocephalous. No wonder the poor thing had such a bad headache. Calcified regions are sticky, adhering to brain tissue, they are hard to remove without damaging the brain tissue they are stuck to.
The next few hours were a blur, it all felt like it was happening to someone else; I remember occasionally breaking down and crying, leaving her bedside to shed tears in the corridor. Then I would hold it together, firmly in “nurse” mode and talk to the doctors and nurses, in full control of my emotions. I knew all the drills.
There was the phone call to my husband who was waiting anxiously by his phone with his parents and my brother;
He answered; “Yes?”
“She has a tumour.”
Silence. “Tumour” he relayed flatly. And I could see their faces from the silence that followed.
There was the text to my mum because I couldn’t call her right away. “She has a tumour.”
There was the phone call to my dad who rang as soon as he got the message I’d taken her for a CT. “I’ve just found out…She has a tumour.”
Those words, unreal. It just had to be happening to someone else. Then speaking to my mum, being able to adequately describe the nature of the tumour in proper medical speak then suddenly choking back sobs in the hospital ED, where we’d been transferred for emergency admission. There was a general anaesthetic for an MRI, there were frantic phone calls to colleagues and friends, a hurried search to find the best neurosurgeon in Australia; we didn’t have long to find one.
We were allowed to leave the hospital that night, home for gate leave where we finally made a decision on which neurosurgeon to go with, an excellent surgeon based at Westmead Hospital. We also had time, three days, to pack our bags, book a three week hotel stay near the hospital, cook and freeze meals to take with us. I also had time to try to mentally prepare my daughter for what was to come. She still can’t remember anything about that time, so perhaps I should have spent those three days prepping myself. Being a nurse was incredibly helpful to me, particularly for the long 12 day stint we spent in Intensive Care but it wasn’t enough. I needed to know more and that’s why I’m blogging all this.
Perhaps there is someone out there right now who is going through a similar crisis and the posts that follow will help and give them what I wish I’d had to help me. Plus, being true to my nature, a born writer, I feel the need to W-R-I-T-E it all out, I have so much to say. So if you’re still reading, thank you, over the next few weeks I’ll be sharing my journey with you. Next Post: “My Gethsemane: The night before they removed my daughter’s brain tumour”