noemiThe domino moment…Most of you have experienced some sort of ‘domino moments’ in your life which you will never forget. Some are good, some are bad but that single moment shifted your life and changed it forever.

Our moment happened sitting in a hospital room and being told that our 4 year old daughter Zofeya had a brain tumour.

The world around you crumbles and although everything has changed in this single moment, you know one thing for certain, nothing will ever be the same again.

As a parent you struggle to comprehend the reality of the situation and pray it’s all a mistake with the MRI scan results. How could Zofeya have a brain tumour if the only symptoms she had was difficulty with her balance and co-ordination? She wasn’t in pain, behaved normal and displayed no other signs that something had changed.

Within hours we were transported via ambulance and blue light to Addenbrookes, a specialist hospital and the speed in which everything is happening around you is also the speed in which you get catapulted into a world you were barely aware of, the world of oncology…the world of childhood cancer.

How was I to know that in the UK alone every day 10 children get diagnosed with cancer and how would I have ever guessed that this will not be a statistic for us anymore,…it will be us.

The days after Zofeya’s diagnosis are a blur of consultants bombarding you with tons of information in a strange ‘oncology’ language and the many life and death decisions you have to make as parent in regards to your child’s life. On top of everything you have a four year old who just wants to go home as she doesn’t understand yet that her life will never be the same and you have another older child who is suddenly staying with friends or family while you have ‘moved’ into hospital.

Family and friend support is crucial and we informed some to pray for us who passed on the prayer request. We were overwhelmed with the huge support and this is how Zofeya’s blog came into existence (www.zofeya.dorgu.com). I did not have the strength, time or words to reply to everyone in person so my brother created this blog as means of communicating with the world outside our hospital room and I made the decision to be as honest and real about our situation as possible

But even with this decision, some moments can’t be expressed in words and since my camera was already my chosen communication tool I also decided to record Zofeya’s journey with photography and open up the door to allow outsiders a glimpse into the world of childhood cancer and how it can look like. It’s a challenging world, filled with tears, prayers, hard decisions and questions. Surprisingly it’s also filled with hope, sheer determination and I have never encountered truer courage than in those kids who are fighting for their life and still smile and play whenever they are able to.

Before Zofeya’s brain surgery we were allowed home for a few days and tried to spend as much quality family time as possible. How do you prepare for the day when you have to trust your child’s life into strangers hands and know you will be begging God to allow you to spent more time with your child? As a parent you are torn between screaming at God, begging, not understanding and only wanting to cry (of course not in front of your kids). God spoke to me about trusting him with all my heart and not depending on my own understanding (Proverbs 3,5) but I tell you what he was asking of me was the hardest lesson I had to learn, to trust him with the most important thing in my life, my family, the people I love.

Zofeya’s operation was the longest and hardest day of our life. All you do is pray and wait. No one can tell you how long it will take, what the silence after many hours of operation means and if you will see you child again. After 8.5 hours of major brain surgery we finally got the call that she was out of the theatre and we ran through the hospital to be finally able to see Zofeya again. Your heart breaks to see your child in terrible pain and over the next two days Zofeya was diagnosed with Posterior Fossa Syndrome and lost all abilities to move, communicate and even smile. Nothing quite breaks your heart as parent than your helplessness and your child’s eyes looking at you with pain and broken trust that you let this pain happen and didn’t protect them.

To cut a long story short, Zofeya’s was diagnosed with an aggressive medulloblastoma brain tumour (you only find out after surgery) and our long treatment journey started. 30 daily radiotherapy sessions under general anaesthetic and more than a year of chemotherapy as well as re-learning to walk, communicate and working on fine motor skills. We’ve been on this journey for more than 17 months and during this time our life revolved around little control, blood counts, treatment, hospital appointments, low immunity and daily feeds (Zofeya stopped eating last year). You have to accept that your childs future has changed and your child will never be like before her diagnosis anymore. She will have to live and cope with the side effects of her Posterior Fossa Syndrome and treatment and live under the shadow of possibility, that her cancer can return.

Since the 24/11/14 Zofeya is in remission (no traces of cancer are seen on her scan result) and slowly we are trying to reclaim our life again.

So what have I learned from the last 1.5 years?

  • Cancer sucks (excuse my language). It isn’t fair, can affect anyone, at any age and until there is a better treatment will most likely change your life and the lives of those who love you or the person affected by cancer, even if they come out the other end and are in remission.
  • It’s o.k. to question God, to be angry with him and to have a lot of unanswered questions. I’m pretty sure he wants you to be real and trust me, you will go through a lot of emotions.
  • One of the best advice given to me was that God will help us through and give us enough endurance and strength for the next months, weeks, days and sometimes hours alone.
  • This diagnosis will change your life and you can’t face cancer alone. Allow your family, friends, church and community to help you through this difficult time.
  • You will become an expert at this strange oncology (cancer) language but remember that not everyone knows what you’re talking about when you mention Hb, WBC, platelets, NG tubes, Hickman Line, Neutropenia, flushes, lumbar puncture, cannula and nil by mouth.
  • Find a way to express yourself and work through what is happening to you, your child, family member or friend diagnosed with cancer. For me Zofeya’s blog and photography was a way to stay sane.
  • Even when you manage to finish your treatment and are in remission only few people will truly understand that you are far from ‘back to normal’ and actually have to rebuild a ‘new normal’ from the broken pieces of your life. Someone once told me that a cancer diagnosis is comparable to a natural disaster; it’s all about survival. Once the disaster is over you are dealing with the aftermath of it, rebuilding your life with or without the special person you fought so hard for.
  • There will always be some unanswered questions. We have met some families whose kids lost the battle to cancer and we will never know why God sometimes answers our prayers and sometimes stays quiet. The same counts for when you see newborn babies fighting cancer. But it’s o.k. We don’t need to understand everything. We just need to pray for enough strength to get through this time and trust that God doesn’t just love me but also loves my child even more than I do.

[To read more about Zofeya, take a look at her blog over here]

[For more Taboo Topics stories related to Cancer, click here]

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