Xuané… a Reason to Smile Part 9

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)

In early January 2011 I decided to cut Xuané’s hair in a bob because more and more was falling out and every morning when she got up she had less hair. At her sister’s second birthday she only had a few clumps of hair here and there, and I could see what it was doing to the family. We put hats on her but Xuané was always positive and continued laughing and talking as though nothing was wrong.

Her second block of chemotherapy started on the 20th January and she had no new side-effects; she did not get sores in her mouth, she was not nauseous, she just continued losing her hair and was worn-out after every session. All of her hair was shaved off after the second block of chemo and she looked at me and I had to struggle to hold back the tears. She smiled at me and said, “Mamma I am so nice and cool now… am I pretty at least?” My child, you are the most beautiful bald head I know!

Her third block of chemo started on the 19th February and when it was done we returned home with the thought that it would all be over now. On the 16th March Xuané went for another MRI under local anaesthetic to make sure that the chemotherapy was working so that we could start with the next round. The doctor informed me that the tumour had grown while Xuané was receiving chemotherapy and that the chemo treatment would not be continued; she would from now on only receive palliative treatment as any new symptoms arose. On the one hand I was glad that the chemo was over, but was also anxious about what lay ahead. Her port was removed on 20th April 2011 and that signalled the end of chemotherapy.

On the 19th May Xuané underwent another MRI to check on the growth of the tumour and the amount of damage it was doing. I could see it daily because she was walking with more and more difficulty, but it was as though I suppressed it and blocked it out; I did not want to admit it.

At the end of June 2011 the children and I once again returned to the Cape and my husband, and I started work again immediately and Xuané went back to school. By the 11th July we had been to see a paediatrician and an oncologist because Xuané was suffering very badly with her bladder and her urine smelled rank and tart. She had begun to feel very self-conscious about it because even her clothing had begun to reek and no matter what nice-smelling stuff we used, nothing helped cover the awful smell.

I went through so many emotions during the month of July that I could not explain to people how I felt, so I decided to write. I realised that I was not the only one who felt like this; that there were other mommies like me who were dealing with emotions that they could not describe to others without crying hysterically, and so I wrote this on my Facebook wall so that everyone could understand how I felt:

From one Onco Mom to Another…

Have you ever had the feeling that you lose all your Mom-powers when you walk into a hospital?

Have you ever felt that anger when they stick your child with needles and push pipes into her and inject her with poison and there’s nothing you can do about it?

Ever felt the mistrust when you look into your child eyes and you know that you lied, that it will hurt?

Ever had the feeling of unimaginable pain when the child of another onco-couple loses the fight and you wonder when it’s going to be your turn?

Ever experienced that feeling of speechlessness when your child comes to you and asks you when Jesus is coming to fetch her home?

Ever felt as if the Earth is trying to suck you in and you can’t get out when those theatre doors close behind you?

Ever felt that you could murder someone with your bare hands when they make stupid remarks about your child?

Ever felt that you want to run away and sit in a corner and just forget about everything for a little while?

How do you know when you’ve reached the limit of the amount of bad news you can take? Everyone always wants to know how things are going and if you’re still strong enough. It’s as if they expect that you’ll have a nervous breakdown any moment, and everyone stands there bewildered the day Mom starts crying uncontrollably… but they’re standing there with the psychologist’s number in hand… I mean freaking HELL!

Definitely my experience!

My life fell apart the day I found out my child has cancer. Every time you hear bad news another little piece of your heart breaks and it’s as if you eventually have no more tears left. What you have in place of tears is an uncontrollable rage and harshness, and unfortunately the person who phones first is the one to be attacked.

Someone just has to look funny at your child’s bald head and you feel like you’re about to lose your mind and attack him. But then you get the ones who will actually tell you off for cutting your little daughter’s hair so short… “She looks like a boy.” So forgive me if I don’t always have my moods under control, but sometimes it’s just flippin’ impossible.

You don’t always want to hear that you must be strong and you must keep on believing; it’s very difficult if you’re constantly being given bad news. The cherry on top is when the doctors tell you that there’s nothing more they can do for your child; you should just all go home and wait and carry on as per normal. How the hell does a person continue like normal?

So, to every cancer mother out there:

You are allowed to be angry
You are allowed to shout and scream
You are allowed to be tired
You are allowed to get sick
You ARE ALLOWED to cry!

We are also just human – we don’t have super-powers, being strong is our only option; we are going to cry and get angry, we are going to get sick and tired, so stop watching us like hawks and waiting for us to fall apart. For us there is only one thing to focus on and that is GOOD NEWS about our children. You live every single day for that extra bit of hope that today will be a pain-free/medicine-free day.

A Mothers Love

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 10 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 9 September, 2015, in Blog, Onco Parents and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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