Xuané… a Reason to Smile Part 11

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)

My husband and I decided to return to the Transvaal so that Xuané could spend whatever time she had left among family and those who loved her, and we also needed support for the road ahead.

I attempted to express my deep distress, but it was difficult to speak to people without bursting into tears, so I took to writing on my Facebook page instead so that everyone could see and gain a bit of understanding as to how I felt:

Help a Mother in Distress!

My child has cancer!” Yes it sounds very blatant to say it like that, but the more you say it, the more it sinks in… and the more you realise this is reality!

Many people have told me that I am an inspiration for them because, despite the past three years’ setbacks, my husband and I remained standing and continued as normal. Well, perhaps not normal, because when hospitals and pharmacies become a daily expense there is something seriously wrong, but apart from that, we kept laughing, kept hanging out with our friends etc.

“These days things are getting more difficult; I see new things every day, stress is beginning to take its toll on me. My last call from the oncologist was at the end of April when she told me they cannot do anything more for my child and that she has a maximum of 2 years to live.

These days I can see more and more how she yearns to play with her sister, to use the toilet like a “normal” girl, not to be in pain all the time… her legs are full of holes from the lack of blood circulation and it takes ages for them to heal.

I dream many nights of standing next to her grave, and when I awaken my pillow is sopping wet from the tears I have cried in my sleep. I am too scared to go back to sleep, to dream that dream again… and then I realise that one of these days it will no longer be a dream… How will I react? Will I ever get over it? Will I ever again find peace and serenity? Will I push my youngest away or hold her too close because I am scared of losing her too? These are questions that go through my mind every day I see her.

Do you know what it is like to know that you will never see your child matriculate; help her choose her matric farewell dress; experience her first broken heart; see her walk down the aisle, hold her first baby in her arms? Yes, it is easy to say be positive, and I am trying my best, but people, I can see how my child’s health is getting worse; I see her tears of pain; I see the yearning in her eyes to go and play with her friends, the despondence when she has to be helped to do absolutely everything…

The other day she asked me “Mamma can’t Jesus just come and fetch me now so that your back will not hurt anymore? I can see how much your back hurts when you have to pick me up.” HOW does one answer such a question? How do you look at your child and comfort her without tears in your eyes?

So, I try to remain positive, but it gets more difficult by the day. Please forgive me the day that I look a bit dishevelled, but I am only human. Some days I will be more tired than others; some days I will be pale; some days I will get up with puffy eyes; some days it will seem as though I am on another planet; and some days I will not want to speak to anyone! Just give me a few days… it just means that reality has sunk in a bit deeper…

If anyone that can answer all my questions, apart from telling me to pray, because that is all I can do every second of every day, please do so, because I want to stop feeling as though I am going insane.

The move was arranged and we returned to the Transvaal and started looking for a school for Xuané and Mia, but to find a school that is wheelchair-friendly was a mission. Everyone had the same response, “Sorry Ma’am but we cannot accommodate you!

One school decided to take a chance; Kallie de Haas Junior School accepted Xuané without thinking twice. They made ramps so that she could move around more freely with her wheelchair and made her desk higher so that her wheelchair could fit under it. We did not ask for any of this – they just did it of their own accord. The kindergarten teacher learnt how to drain her catheter, which was also a bonus because it meant that I did not have to slip away from work every day to drive to the school to do it. Xuané finished her Grade R year at Kallie Klitsies and enjoyed every moment of it.

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 12 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 11 September, 2015, in Blog, Onco Parents and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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