When they told me my daughter had a brain tumour…and how I already knew

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Penguie aka ‘Sparkle Eyes’ also got a scan…Seconds before we found out my beautiful daughter was carrying an enormous tumour in her head.

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 CT

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.

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My angel packing for hospital and the long, hard road ahead. On my Facebook page I shared this photo and said “Good job she is a Fighter as well as an Angel.”

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”

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  16 comments for “When they told me my daughter had a brain tumour…and how I already knew

  1. February 4, 2014 at 3:38 am

    I can’t believe what you’ve gone through. Prayers for you and your beautiful daughter.

  2. February 4, 2014 at 3:41 am

    Such a strong little girl and an amazing family to love and support her and you. I am glad that you had the knowledge but of course when it comes to your own child, I can only imagine it doesn’t really matter what you learned in school. We are thinking about you guys.

    • Naomi R Cook
      February 4, 2014 at 9:27 pm

      Thanks Lindsey x

  3. February 4, 2014 at 5:23 am

    Unfortunately your story is very similar to ours with our precious little girl which all started 3 years ago. I feel for your little girl and the whole family, life is never the same after a diagnosis such as this. I can say, you will be amazed at how children can cope and show much courage and strength its amazing. Stay strong. .
    Sue xx

    • Naomi R Cook
      February 4, 2014 at 9:27 pm

      Thanks for touching base with me Sue, I’d love to hear your story if you ever get time send me a message through my Writer/Author facebook page (Naomi Cook Writer/Author). I definitely feel life is beginning anew, although I’m not quite sure what that means for me, her and us yet. x

  4. Soumaya
    February 4, 2014 at 10:30 am

    Naomi dearest; I admire very much your courage , you are so brave and being so in a loving manner. Our Angel Hana, (I hope you were reading my messages on your site) carries a wonderful and wise soul, who is teaching us a lot . I want you to know that I am there for you, whenever you feel you need to download something. Meanwhile I am always holding you all in loving space.

  5. Azza Hassan
    February 4, 2014 at 10:07 pm

    God bless you and your lovely angel. I am a friend of your in-laws. I salute your bravery and courage and hopefully you will pull it threw. Back home everyone who knows your in -laws are praying vigorously for your lovely angel. God will never let you down isa. Best of luck and health always and always

  6. February 4, 2014 at 10:26 pm

    Dear Naomi, I came across your post via facebook. Thank you so much for sharing. When a mum things there is something wrong, there usually is. So good you followed your instincts. I wish with all my heart and soul that Naomi can continue to enjoy her life being the fighter and the angel that she is. May God bless her and your family!

  7. Dalia Arafa
    February 5, 2014 at 1:09 am

    Dear Naomi, No words can express what we all feel here in Cairo, we are all praying for Hana; have faith in God as God took and will take care of her and will always watch over her… May God be with you all and I wish a speedy recovery to Hana and all this hard days will be forgotten soon when you see her playing and smiling again. God bless you all

  8. fideleharfouche
    February 5, 2014 at 5:16 pm

    My prayers and thoughts are with you and your family … and a quick painless recovery for your angel! ❤ thanks for sharing and keep writing!

  9. Alessandro
    February 5, 2014 at 5:36 pm

    It must have been really hard for you.
    Writing is of big help. Hope you don’t feel alone. Have trust in good doctors.
    I wish you and your family health and happiness.

  10. Aly Thabet
    February 6, 2014 at 12:09 am

    I hope & pray that Hanna will soon recover & I also admire the courage that you & the family are facing this with.

  11. Ayman
    February 6, 2014 at 2:16 am

    Such courageous eloquence at the most dire of times ! All our prayers are with you all !

  12. Omar Ascar
    February 6, 2014 at 12:52 pm

    will Pray for you and your beautiful daughter.

  13. Haylee
    March 20, 2014 at 4:11 am

    As a 24 year old nurse who has been seeing an oncologist on a regular basis since I was 12, I recently started reading your blog about your daughter and have found it to be so powerful. Now that I am older and look back at what I have been through I now see what my mum (who is also a nurse) must have gone through as well. I always sat in the hospital rooms oblivious to how sick I was (I am now fortunate enough to have manageable illness) and never really knew how my mum felt waiting for me to come out of theatre post bone marrow biopsy or how excruciatingly painful waiting for answers was. She too always said there was something not right with me up until my diagnosis. Your journey with your own daughter Hana is amazing and I cant imagine how you are feeling but your daughter when she grows up will be forever grateful for what you have done and will appreciate all the love and time and effort you have put into her.

    • Naomi R Cook
      March 24, 2014 at 6:15 pm

      Hi Haylee, Thanks so much for following our journey and for taking the time to share your own. I hope your own health conditions improve with time…It’s always good to connect with another Nurse!

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