Xuané… a Reason to Smile Part 1

September is Childhood Cancer Awareness Month, and throughout this month we will be sharing the story of Xuané Niewenhuis, a beautiful little girl who was diagnosed with Ependymoma in 2010, and her and her family’s journey with cancer from a Mother’s point of view (per an e-book written by her mother).

Some of the story and the photos may not be that pleasant to hear or look at, but we share this story with the permission of the Niewenhuis family to bring Awareness regarding Childhood Cancer to the public in general so that they can get a bit of an idea what battling Childhood Cancer is like – why the Little Fighters Cancer Trust does what it does and why creating Awareness around Childhood Cancer is so important.

The Best Protection
Is Early Detection

Little Fighters Cancer Trust would like to extend a huge thank you to the Niewenhuis family for allowing us to share Xuané’s story and photos, and hope that it will bring awareness and enlightenment to other parents.

xuane ...a Reason to Smile

 Xuané Niewenhuis
17 August 2006 – 24 October 2014
Forever ^8^


a Reason to Smile


Theresa Botha Nieuwenhuis


I’m a mother of two beautiful girls … or just one. You see, the story goes like this; my oldest daughter died of a rare type of childhood cancer at the age of 8 years, 2 months and 6 days. She had an Anaplastic Ependymoma that grew in her spinal cord and later spread to her abdomen, and paralysed her little body.

But let’s start from the beginning…

Childhood Ependymoma is a very rare type of cancer in which malignant (cancer) cells form in the tissues of the brain or spinal cord.

SpineTumorThC2The brain controls vital functions such as memory and learning, emotion, and the senses (Hearing, Sight, Smell, Taste, and Touch). The spinal cord is made up of bundles of nerve fibres that connect the brain with nerves in most parts of the body. Ependymal cells, which line the ventricles and passageways in the brain and the spinal cord, manufacture cerebrospinal fluid (CSF). Ependymomas form from these cells.

There are four main subtypes of Ependymoma:

  1. Subependymoma (Grade I)
  2. Myxopapillary ependymoma (Grade I)
  3. Ependymoma (Grade II)
  4. Anaplastic ependymoma (Grade III)

The Grade or Stage of a tumour describes how abnormal the cancer cells look under a microscope and how quickly the tumour is likely to grow and spread. The higher the Grade/Stage, the more quickly the cancer will grow and spread.

Ependymomas can form anywhere in the passageways and the fluid-filled ventricles of

Anatomy of the inside of the brain showing the lateral ventricle, third ventricle, fourth ventricle and the passageways between the ventricles (with cerebrospinal fluid shown in blue). Other parts of the brain shown include the cerebrum, cerebellum, spinal cord, and brain stem (pons and medulla).

the brain and spinal cord. Most ependymomas form in the fourth ventricle and affect the cerebellum and the brain-stem. The part of the brain that is affected by the tumour depends on where the ependymoma forms.

I was an ordinary woman who enjoyed life with all its challenges and heartaches. I have experienced everything.

I met my husband in November 2004 and fell head over heels in love. I could not talk about anything else; I thought there could never again be anything bad in my life because I had met the love of my life, and I thought that heartache was a thing of the past.

In December 2005 my husband conveyed the news to me that my father had suffered a heart attack and had died. I half blamed him – why did he have to hurt me by giving me such news? We had shared so many happy times together and now he was the one who informed me that I would NEVER see my father again…

Yes, I know what you are thinking – this woman must have a hormone problem – but I had so much emotion and anger that I did not know how to handle it, and he was just unlucky enough to be the first person I could take it out on.

With sadness comes happiness … or so they say. Just after Christmas I found out I was pregnant with our first child. I was really scared at first because it was something new, but I accepted my responsibility and so my connection with Xuané began.

I talked to her every day and she grew so beautifully. We were married in March 2006 and in August 2006 I received the most beautiful angel. I had a C-Section, so I was not awake to be the first to see her.

All that I remember is when that I came to I was really sore, but the moment I heard her cry I smiled and I knew we would still share much laughter and many tears. Little did I know what awaited me; lots of tears, difficult days, sleepless nights and unanswered questions.

This is my story… an Onco-mom’s story…

To live with childhood cancer is not easy and not always pretty, but between all the tears there is still something to smile about.


Xuané Niewenhuis 17 August 2006 - 24 October 2014 Forever ^8^

We will continue with Part 2 of Xuané… a Reason to Smile tomorrow…


About LFCT

This is a blog about CHILDHOOD CANCER and CHILDHOOD CANCER AWARENESS Little Fighters Cancer Trust is a non-profit organisation that offers support and aid to Children with Cancer and their families. When a child is diagnosed with cancer it affects the whole family. One of the parents, usually the mother, must give up their job to care for the child and this creates financial problems for the family. In South Africa especially the majority of these families are not well-to-do; many of them are rural. A diagnosis of cancer can wipe out any family’s finances, let alone a poor family. The costs of special medications, special diets, hospital stays, transport to and from the hospital or clinic and accommodation and food costs for the mother who spends most of the time at her child’s bedside are astronomical. These are the people and problems that fall through the cracks, and these are the people that Little Fighters Cancer Trust has pledged to help in any way possible. LFCT takes a holistic approach to assisting the Children with Cancer and their Families, with the main aim to be the preservation of individual dignity and pride. Little Fighters Cancer Trust also focuses on promotion and advocacy of National Childhood Cancer Awareness in an effort to increase awareness of Early Warning Signs of Childhood Cancer. This would result in earlier diagnosis, giving the Child with Cancer more of a chance at Treatment and Survival. See "About" for more Background info

Posted on 1 September, 2015, in Blog, Onco Parents and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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