Behind the Facebook smiles – Life after my daughter’s brain surgery

imageWhen many people found out that my daughter’s tumour was benign they thought that because it was removed successfully that life would return to normal, just like that. Because it wasn’t malignant, cancer, it was thought that everything would be just like it used to be, right after the surgery.

I wish.

Perhaps to a certain extent I had even subconsciously hoped that too. I was well aware of the life long medical consequences that my daughter would carry after having an enormous craniopharyngioma; the Panhypopituitarism, the complete and total hormone replacement, wearing a medical alert bracelet and never leaving home without her emergency, life saving steroid injection. Not to mention the risks of Hypothalamic damage; sleep disturbance, hyperphagia, slowed metabolism, and god forbid the much feared ‘hypothalamic obesity’. But what I wasn’t aware of was the amount of time it would take to ‘get my daughter back’. When your child is about to undergo an emergency surgery that will save their lives, the last thing on your mind is ‘what will life be like afterwards?’ You have one, single wish and that is that your child will survive the operation.

The Highs

There was the initial elation at the successful surgery, at the complete resection of the tumour. That was a high. There was even rejoicing at the onset of pituitary failure, or panhypopituitarism because that meant one thing: MY DAUGHTER WAS ALIVE. I remember the day before I took my daughter for her diagnostic CT scan, I’d said to my husband that she could have a craniopharyngioma, and if she did, it would be OK. He’d  shuddered, but she’d be on lifelong medication in order to stay alive! That would be terrible, he’d said. But I’d shaken my head, no it wouldn’t, I’d said, it would mean that she’d be alive. Hypothyroidism, Adrenal Insufficiency, Diabetes Insipidus, Growth Hormone Deficiency, Gonadotropin Insufficiency. Bring it on. It means she’s alive.

The Lows

The lows are hard. I’m having a low today. I miss my daughter. Since the surgery a few weeks ago I’ve barely had a glimpse of her. Her new face, her new body are unpredictable to me, ruled by the drugs that keep her alive. Her skin is  ivory pale, cool and clammy to touch, chilly extremities. She has random hot flushes. Her eyes are sunken and dark, her face sometimes puffy, her tummy ballooning with enormous fluid shifts and changing steroid doses. When I try and peer deep into her eyes, to catch a glimpse of her in there, to meet her for a second, I can’t see her. She stares back, almost coldly sometimes, thinking of something else. Often food. Often nothing. There is anger there, frustration. I love her and I miss her. She is emotionally labile, swinging from being happily content to loud fits of hollow sobbing. Repetitive cries that ring out over and over again, there is something vacant about those cries, they are almost empty but I know that she is in there somewhere, screaming for me, for the old her who she also misses. Then there is the shouting and a need to throw things to express herself. I encourage her to punch cushions, my three year old will take them to her so she can throw them to let it all out. She directs her anger and frustration at me, it’s much easier to blame someone you know loves you unconditionally. “You made me really ANGRY!” She screams. Her brain is still agitated, shifting, settling, healing from the incredible break to it’s integrity, the violation in surgery. Tissue that should never have to see the light of day. And now it tries to settle itself back into a new norm, tentatively filling the gaping void the tumour left behind. When I hear her sobbing uncontrollably I feel like screaming with her. I hate the tumour for doing this to her, for making her suffer, for making us all suffer tenfold with her. Cracking my broken heart into even tinier pieces with each new tear she sheds. It’s all to easy to whack up a photo and status update on Facebook and look strong, but these moments, inbetween the updates is the reality. A sobbing child and a mum that runs to the bedroom to scream into her pillow. Screaming at the tumour for being there in the first place, for choosing my beautiful daughter’s brain to destroy. Screaming at what life dished up. Screaming because I want ‘normal’ back again.

Hope for a new ‘Normal’

It is still early days, very early days and there is so much room for things to change and improve. There is the hope, belief and a grim determination that things will become normal again. Belief that her short term memory will come back, that the hyperphagia (constant hunger) will go, that she won’t develop morbid hypothalamic obesity in the next few months. That we will all soon adjust to her medications and know exactly when we need to adjust the dose and that she will do too. There is thankfulness  in the medicines that keep her alive and a belief that alternative medicines and therapies will slowly begin to improve her quality of life too.

More on our experiences of our daughter’s recent diagnosis with a brain tumour: When they told me my daughter had a brain tumour…and how I already knew, and My Gethsemane; the night before my daughter had her brain tumour removed

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  15 comments for “Behind the Facebook smiles – Life after my daughter’s brain surgery

  1. February 14, 2014 at 9:51 pm

    I’m so sorry, Naomi. I hope things get better soon.

    • Naomi R Cook
      February 15, 2014 at 1:12 am

      Thanks Sharon… They will, I’m counting on it!

  2. Steven
    February 14, 2014 at 11:41 pm

    There is no fairness in all this and I so wish this wasn’t happening to Hana and her family, you all don’t deserve it.
    I also see through your writing that you will positively change other people’s lives, such a great thing to do when life is so tough on you.
    Your inspiration will help others but it will also help the one who needs it most, you will succeed I know it!

    • Naomi R Cook
      February 15, 2014 at 1:14 am

      Such sweet words steven, thank you x

  3. Heba Awaad
    February 15, 2014 at 6:45 am

    You will do it Naomi. ..all of you will accommodate to the new normal that will come with its up and down. Its not easy to write you something to help when I am not in your shoes I know but still knowing that there are so many people out there that really think of you all and believe in you specifically might just help an inch. Bless you all xxx

  4. February 15, 2014 at 8:34 am

    Naomi,

    Live sometimes sucks! As simple as that. I have given up long ago to believe in fairness of life and in the good and graceful god the churches are preaching. The best thing that could and can happen to Hana is to have parents like you who simply take it. Round after round, day after day. Your little girl is a giant and so are you.

  5. Hanan Gawish
    February 15, 2014 at 11:53 am

    I am a prof of endocrinology following similar cases. I appreciate your feelings but just few words for you and her father. Children stop worrying when they see in their physician’s and more important in their parents’ eyes that they are going to be OK. Let her feel that from you.
    After the first period of adjusting her replacement doses, she will be fine. Let her back to her normal excercise and out playing with other children and she will no longer think a lot of her Hunger. Enjoy that she is here whatever the consequences.

  6. February 15, 2014 at 12:27 pm

    Hi , it’s very painful to read these raw blogs but i feel that in some way by knowing what is really happening with you over there I’m helping in some miniscule way. There are so many people who are wishing you well and I think that by writing what’s happening you will be helping others who may ,heaven forbid, find themselves in similar positions. Thinking of you always.

  7. Nounou Radwan
    February 15, 2014 at 12:37 pm

    We never know what tests God puts us through . All we can do is pray to ask Him to help us through this test . May God give u the patience & tolerance to bear this burden …

  8. Rana
    February 15, 2014 at 1:31 pm

    My heart aches for you. But I can tell you are a fighter you are fighting this for your child and your family and it is a whole lot to take on. But you can do it, you are so strong and brave and since day one of reading your posts and statuses I have been so inspired. May God be with you all through this gruellingg experience, you are always in my prayers, stay strong x

  9. Talaat Hadidi
    February 15, 2014 at 2:48 pm

    I wish her the best of luck
    God be with you

  10. February 16, 2014 at 12:47 am

    My heart is with you all, Naomi. Thank you for sharing this with your readers. Stay strong and keep writing to get the pain out of your chest. You have ears out there listening to you and supporting you. ‘Normal’ will settle back into your lives. Much love x

  11. February 17, 2014 at 7:31 pm

    Naomi,behind the facebook there are lots of friends who were moved by your dilemma,agitated by your pain and praying for your family…..I do know that God will do your child well and reward you for every moment of patience…you and Nour are bravehearts,i know it….nothing more can do than pray for your family though being thousands of kilometers away.

  12. February 20, 2014 at 8:12 am

    Wishing you and your family the best of luck Naomi, I hope you do reach a new and happy normal soon.

  13. September 15, 2015 at 7:40 pm

    Naomi,

    My name is Joe. I’m a Craniopharyngioma survivor. To shorten my history, first occurrence age 2, recurrence age 12, no pituitary function, damage to hypothalamus. I’m now 25, with a bachelor’s degree and a full-time software developer.

    I’ve gone and sometimes still go through all of this myself. My first and foremost suggestion would be to get your daughter into therapy as soon possible. It did wonders for me. I particularly recommend finding a Neuropsychologist, who will understand EXACTLY what your daughter is struggling with and can truly help her cope. Secondly, if I were not on Anti-depressants, I would still be having to go through all the awfulness your daughter is feeling. It took 8 years for me to venture out and get it done. In addition to a neuropsychologist, I recommend you also visit a Psychiatrist to evaluate your daughter.

    One of the hardest parts of all of this for my family was “normalcy”. Things have changed. Seeking help doesn’t change who your daughter is, or how AMAZINGLY strong she is. Everyone needs help.

    I hope I’ve been helpful and not to forward with all of this.

    Please feel free to contact me should you need any guidance or help. I’ve been dealing with this my whole life.

    — Joe

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