Xuané… a Reason to Smile Part 10

xuane ...a Reason to Smile

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


a Reason to Smile


Theresa Botha Nieuwenhuis

2009 – 2013 (continued)

Xuané again underwent an MRI on 29th August 2011 at the Panorama Medi Clinic, and the urologist informed us that her bladder was becoming dysfunctional and in order to prevent infection they would insert a suprabubic catheter that she would be able to manage herself at a later stage.

During the operation, which would not take too long, her appendix would be connected to her bladder; should they not be able to use her appendix, they would use a piece of her small intestine. I was scared because I did not want to hurt her; I had already broken too many promises to her.

The operation was performed on 30th September 2011 and Xuané was sent home with a catheter for 6 weeks. She was not allowed to go to school with this catheter in as the chance of infection was very high, and an accident in front of her friends would have broken her.

Once the six-week period was over we returned to the urologist and he showed me how to drain the catheter; it was actually rather easy, but had to be done every 4 hours. I showed one of the teachers at her school how to do it so that I did not have to take off work every time to go and do it. For a while it went very well; she had fewer bladder infections and was very happy.

Around November 2011 I began to notice that Xuané was walking less and crawling more, so I asked her why she was crawling and she told me that her one foot felt funny. I was confused and angry at the same time; what was she actually saying? I took a needle and lightly pricked her foot and asked her if she felt it – her answer came like a tidal-wave, “No, Mamma!”

I realised that my child was becoming paralysed… she was 5 years old and would be paralysed by the time that she had to start school; she would never be able to do a sport, or ballet, or be able to dance at her matric farewell… or even at her wedding. “What man will want a paralysed woman?” were my thoughts.

Yes, it sounds selfish, but those are the feelings that come automatically and the thoughts that drive one insane. My parents bought a walking frame to see whether it would help her walk because we did not want to get a wheelchair because that would mean… yes… my child is paralysed!

We struggled to get her to use the walking frame because it was very difficult for her to move without falling. My parents then bought a wheelchair and she made it her own; she raced around as though she had not a care in the world and she was so patient and always ready with a smile and a hug.

I decided to go for a second opinion to make sure that there was nothing else that could be done for her; I made an appointment with Professor C Stefan and we went to see her on 21st February, together with Dr Vlok the neurosurgeon, who told us they wanted to operate, but this time in order to remove everything. The nerves would be cut, which wold mean that Xuané would have no feeling and would be paralysed from her waist down.

My husband had to make the decision, and he said no, we are not going to operate; we should have another MRI done to make sure that is the right decision; I informed the doctor of our decision and another MRI was scheduled.

On 12th April 2012, I was at work, relaxed and focusing on something else for a change when I received a phone call from the doctor; when I heard her voice on the other side of the line my heart skipped a beat. She told me that the tumour had grown too much and an operation was totally out of the question; they could do nothing for her and they suggested that we enjoy every minute of the time we still had her with us.

I said “that is fine, thank you” and put the phone down and burst into tears. My boss walked into my office and hugged me close and whispered to me that everything would work out fine but I did not believe him because up to now everything had gone wrong; nothing ever went right. I was sent home and had to share this latest news with my husband.

I remember walking across to my neighbour and when she opened her front door I just looked at her with tears in my eyes and she asked, “Oh no, what now?”

I walked in and she put the kettle on right away; I told her everything and she held me close as I cried uncontrollably. I remember telling her that I was afraid that if Xuané did not make it I would lose my husband, and I could not lose both my child and my husband; that would just be too much. She comforted me and told me not to look for things that were not there, and to just relax.

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 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, why creating Awareness around Childhood Cancer is so important, and enlightenment to other parents.

We will continue with Part 11 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 10 September, 2015, in Blog, Onco Parents and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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