Xuané… a Reason to Smile Part 12

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)

I was sitting at work one day thinking about what I would buy for the children for Christmas and thought “they have so much, but Christmas is not Christmas without presents.” I sat and thought then about what I wanted for my children, so I wrote once more:

A Mother’s Christmas Wish

Every mother’s Christmas wish is different. Mine starts with PLEASE DEAR FATHER, GIVE MY CHILD BACK HER HEALTH!

So, here is my Christmas Wish for you, My Child:

On a Thursday morning 6 years ago Dear Jesus gave you to your Pappa and me. Even though Mamma was very sore I will never forget that day when I first heard you moan and groan for the very first time. I could not talk, but I heard you. It brought a smile to my face and I knew from that moment that we would share many laughs and tears.

As you grew and reached all your milestones, so my love for you grew too. I wish every day that I could take your pain and discomfort away, but it is beyond my control. What I can do is make every day as comfortable for you as possible; to make you laugh and sometimes cry too, and to just love you for the dear child that you are.

I know that you often cry softly at night so that I cannot hear you; I know that you often look longingly at your sister running around and jumping up and down and climbing on things… wishing and yearning to join her. My darling child, the Lord will not give you something that you cannot handle; so it has been said to me, and I believe it with my heart and soul.

So my dearest, even if you cannot run around, even though you cannot dance, even though you cannot climb and have fun, even if you cannot help yourself, just know that I am there to help you and to care for you as much as I can.

You have been through so much, achieved so much in your 6 years – you are the ultimate! You open people’s eyes, you give people hope and strength for tomorrow, and you my child, with your smile and your beautiful face open people’s hearts to miracles every day.

My Christmas Wish for You:

May you enjoy the fruits of everything you do; May you get the health that you long for; May you experience the pleasure in every precious moment and may you always be my little Xuanétjie. You are my inspiration, and you help me to be a better mom for you and your sister.

Love you loads, my little child!

And so we continued each day… with hope and prayers that things would get better.

January 2013 arrived and with it time that we had to go back for a follow-up MRI, which was scheduled for 29th January. We went to the hospital with hearts full of expectation and so much fear. Xuané was anaesthetised and we waited in the waiting-room while she underwent the MRI.

Once the MRI was done, the doctor called us in and gave Xuané a thorough examination then gave us the results: The tumour had grown, this time by 2 centimetres, which may not sound like a lot to you, but for such a small body it was a LOT.

We returned home with broken hearts, and as with all the other times, we had SO many questions: “HOWCOME, WHY AND FOR WHAT REASON?” Unfortunately, my questions remained unanswered…

We thrived on the support of family and friends and Xuané started her Grade 1 year at Kallie De Haas Primary School and was ecstatic about starting “big” school. Her teacher agreed to drain her catheter every day and to phone me should there be any problems. Xuané enjoyed going to school and came home with new stories every day… and so many smiles. Every night at bath-time she and I would gossip about the day and have some wonderful giggles.

Xuané was examined by an oncologist in July 2013, and the doctor was very happy with her health apart from the tumour. She told me that we should keep an eye out for any unusual lumps or other symptoms and said she wanted to see Xuané once a year from then on because to see her every 3 months while she was so well was unnecessary.

I was so happy! “My child is getting well, our prayers have been heard and we can carry on like any other normal family at last.

Xuané and Mia went to their grandmother for a short vacation, and one day in early September 2013 I sent a short sms to check that the children were alright and that they were behaving themselves, and my mother replied that all was 100%, but what was that lump on Xuané’s back?

My heart sank – I asked my mother to send me a photo, and when I got it my heart felt as though it was sitting in my throat. I immediately called the oncologist and asked her what it could be – she told me that it could be the tumour that had spread. I listened to what she said but I did not want to hear what she said.

I made an appointment and on 30th September it was confirmed that the tumour had grown and had broken through the sacrum and was filling her whole little belly. Once again I burst into tears and asked the doctor how much time she had left – she told me that she could not predict that but that what she could say was that we should enjoy and spend every moment we could with Xuané.

The annual visit to the doctors was once again changed to a monthly one; we were to travel through to Pretoria once a month so that Xuané could be monitored. The doctor also asked me how bad her pain was, and I told her that Xuané never really complains of pain and the doctor said that was fortune within the misfortune because if she should feel her coccyx break it would be an unbearable pain.

Once again I had to share the news with everyone, but I had no energy for more questions so I sent short sms messages to all of the closest family and friends and posted a short message on her Facebook page. The questions flooded in, but I did not even want to look at them, let alone answer them; I had to process it all myself first before I could respond to other people’s pain and questions. I did not tell Xuané about what had transpired because she was already frightened enough about needles and operations; we carried on as normal.

In November 2013 Xuané received certificates for her excellent performance and I was very proud of her, but I could not but help wonder whether these would be the only certificates that she would ever receive or would she receive lots more.

I could not help wondering how long she would still be with us…

Would she reach her 8th birthday?

Would she go quickly?

Would she suffer?

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 13 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 12 September, 2015, in Blog, Onco Parents and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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