Xuané… a Reason to Smile Part 13

xuane ...a Reason to Smile

Xuané Niewenhuis
17 August 2006 – 24 October 2014
Forever ^8^


a Reason to Smile


Theresa Botha Nieuwenhuis


The year started well; Xuané started Grade 2, but something was different about her – she was quieter, more anxious, and she wanted to be around us all of the time. She did not want to be left alone for one second; why, I had no idea. Sometimes I got a bit impatient with her because some days I needed to just be alone with my heartache and tears, and with her around all the time I could not vent my emotions, only my frustration.

The tumour was very large; I could already see the damage because as the months passed I could see she was becoming more tired; her stomach started swelling, and it became more difficult to drain her catheter.

Early in May 2014 while I was bathing Xuané, I realised that her one leg was so terribly swollen that it looked like she had three legs. I phoned the doctor and she told me to take her to casualty so that the locum could have a look at her and see what was wrong. I went to casualty and the GP told me that it looked as though there was a blockage. What a blockage meant, I had no idea…

We went through to the hospital early the next morning and the oncologist did a sonar, which diagnosed a blood clot. I remember thinking “Dear Lord, how much more? How much more does my child have to handle; I am not sure that my heart can handle any more.”
We were sent home but Xuané had to have her blood tested every third day to check her BPI Count, which would be given through to the oncologist who would tell me how much Warfarin I should give her.

The 26th May was blood-draw day, and the sisters struggled to find Xuané’s vein; she was very tired and pale, and I thought that it was just fatigue and maybe a little cold, but she did not have a fever. The sisters recommended that I take her to see the doctor because she was so pale, which I did, with an anxious heart. The doctor pricked her finger to draw blood to test its viscosity, looked at me and told me to take Xuané to the hospital immediately because there was no blood in her body. I almost died of fright when I heard this and immediately phoned the oncologist to tell her what had happened and that I was on my way.

Standerton is about a 3-hour drive from Pretoria but I made it in 2! I was so stressed that I got a spasm in my lower back and at that stage I hardly had the strength to pick Xuané up without hurting myself further, or worse… letting her fall. I remember opening the car door, picking her up, hearing the car door slam shut then I started running with a half-awake, half-asleep Xuané in my arms.

The doctor was waiting for me in the ward and immediately inserted a drip in Xuané and gave her a half a pint of blood. The doctor did a blood test to check the viscosity and also checked her Haemoglobin; she then called me aside and told me that it looked as though the tumour had broken loose and caused internal bleeding, but that they were not sure of the origin of the bleeding or how she was losing blood as there was no sign that Xuané was bleeding out anywhere.

Xuané’s HB count was 3.9 that day, and the doctor told me that had Xuané not been such a fighter she would not have made it through the day. I really got a fright when I heard that and I realised that I was not ready to say goodbye yet. I asked the doctor whether we could insert a permanent catheter because it was becoming more and more difficult to drain her current one. She agreed and a permanent catheter was inserted, and she also showed me how to insert a catheter should that one come out at an inconvenient time. The doctor also told me it was time to take Xuané out of school.

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 14 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 13 September, 2015, in Blog, Onco Parents and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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