Xuané… a Reason to Smile Part 8

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)

A week later her doctor informed me that they would try chemotherapy for 3 months, after which they wold do another MRI to see whether the chemo had worked, and would then give her another 3 months of chemo.

And yes, my first thought was that now my child’s hair would fall out, and I know it is 40345_1silly, but one does think about it, because “how was she going to feel? How would she react and how would other people react? We were going to become part of this sympathetic family where people looked at you and stared, and I did not want to be a part of that family.

We realised that Xuané did not really have control over her bladder anymore and often wet her bed, so we decided to put her back on nappies to spare her the embarrassment. She went through between 13 and 15 nappies per day and it was difficult to keep up because the nappies became very expensive, and I had to start depending on others for help.

It is strange how people support one when you are going through difficult times; many want to come and pray, others want to help financially… I accepted the prayers but did not want to accept financial help; I asked that people rather bought nappies to help as our medical aid covered her operations and treatment.

After 6 weeks of recuperation Xuané was again admitted on 15th December 2010 to have a port put in so that the chemotherapy could go directly into her main artery. The first round of chemo started on the 16th December, and we realised that after all the horror-stories we had heard, it was not that bad. We were inundated with gifts from all who visited the hospital over the Christmas period and Xuané enjoyed it immensely. She had loads of fun with the sisters on duty in the hospital and we killed ourselves laughing at them and at her.

She was released on 17th December and a great Christmas lay ahead of us. She loved this time of the year; yes, because of the presents, but I think also because it was the time of the year when all the family was together. Christmas that year was held at my older sister’s home, and the children had a whale of a time.

I was combing her bush of long hair on New Year’s Eve, and when I looked down a bunch of hair had come out and I got the fright of my life. All that I could do was to look at my mother and say “NO!” Right then and there I turned on my heel and walked away to collect myself… I had to be strong for her, but Lord knows I could not pull myself together at that moment.

My sister made a nice plait and Xuané was very happy and laughed like she always did, but my heart was very sore because, although I was very glad that she was happy and laughing and talking and was not taking life so seriously, my heart was shattered. Very soon my little girl was going to be without hair and everyone was going to stare at us… did I have the strength for that? No, I did not, but I had to find the strength from somewhere because she needed me so much now, and little Mia even more because even though she was still so young, she was also going through all these things that had crossed our path.

I had to swallow my tears and put a smile on my face to make everyone else around me feel better, even though my own heart was busy shrivelling up. I had to answer questions and walk about in the town, even though all I wanted to do was to go and sit in a corner and cry and not come out until this nightmare was over. Little did I know then that the nightmare had only just begun.

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 9 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 8 September, 2015, in Blog, Onco Parents and tagged , , , , , , , , . Bookmark the permalink. Leave a comment.

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