Xuané… a Reason to Smile Part 6

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)

The doctor met us in the waiting room and informed us that the tumour was still visible and that the signs of the radiation were visible on the scans, but that she could also see a build-up of moisture, which could be responsible for the symptoms. Both my stepfather and I just started crying at the news – the tumour was not growing again; it was just a bladder infection. Upon returning home we once again shared the good news with everyone and carried on living a normal life once more.

Xuane & Dr CharmaineAbout a month later Xuané started to have a lot of little “accidents” and she complained that her back was extremely sore and began walking strangely once more (she looked a bit like a penguin when she walked). Once again I contacted Dr Charmaine and told her that Xuané’s symptoms had become worse and once again an MRI was scheduled, and done on the 23rd November 2010.

Due to the fact that it was rather late when the MRI was finished, we returned home with the assurance from the doctor that she would phone early in the morning with the results. You can just imagine what that night was like for me…

The next morning I rose early and got ready for work. Still tired from lack of sleep and with a brain that was working overtime, I kissed my children goodbye and said “see you later” and went out the back door, but just as I was about to open my car door the doctor phoned. I picked up immediately and waited for the news. This time though, I had not prepared myself for the worst – I had told myself that it was just moisture and pressure that were causing the problems again.

The doctor told me that the tumour had grown and that a neurosurgeon wanted to see us that same afternoon. I said fine, we would see him at one o’ clock, and went back inside the house in a stupor and told my mother to phone Uncle Abraham because we needed to go to the hospital. I went to work but when I stopped outside my work I was overcome by a flood of emotion and just started crying uncontrollably. I quickly went inside and told them I had to go and they understood and said that I must keep them updated.

We went through to Pretoria and were shown directly to the professor’s consulting rooms. He called Xuané and I in and began asking us about the first operation that she had undergone and what treatment she had undergone since. He then examined Xuané and was surprised at how good her reflexes were. He told me that she would have to undergo another operation to remove the tumour, and further treatment would be discussed thereafter. I agreed, with the knowledge from the previous operation of what the dangers could be.

Once again I was thrown into the situation that I had to take decisions about my child that would mean that she would never be able to lead a normal life unless the operation was a success. How was I to tell her this news? How would I explain to her one day that it was her mother who made the decision that landed her in a wheelchair for the rest of her life? But I had to be strong… for her, for myself and for little Mia.

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 7 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 6 September, 2015, in Blog, Onco Parents and tagged , , , , , , , . Bookmark the permalink. Leave a comment.

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