Xuané… a Reason to Smile Part 2
17 August 2006 – 24 October 2014
a Reason to Smile
Theresa Botha Nieuwenhuis
2009 – 2013
We lived in the Cape, in a small town called Vredenburg. Xuané went to school like a normal little girl and was a happy child. She got regular bladder infections and we had to go to the doctor every two weeks to see why she kept on getting feverish and why she urinated so little. Each time she was diagnosed with a bladder infection and her urine was sent away to be cultivated in order to find out what type of bacteria was in her urine so that the correct medicine could be prescribed to kill it. But every second week we were back at the doctor.
Xuané was referred to a urologist and she had her first operation on 28th October 2009.
She was not in theatre that long, but to me it felt like centuries. A cystoscopy was done (this is where the bladder pipe is stretched so that all the urine from the bladder can be expelled to avoid bladder infection). After about an hour in the theatre, she went straight to x-rays to be injected with iodine so they could see whether the operation was a success.
It was difficult for Xuané to urinate after the fluid was injected in, so although the x-rays were taken, they could see nothing. As a result, the doctor could not make a diagnosis and we were sent home in the hope that the operation was a success. Unfortunately it was not long before Xuané was back at the doctor’s office and diagnosed with yet another bladder infection.
By December Xuané had begun walking strangely. My parents came to visit for the holidays and my mother noticed immediately that all was not well. After a few times of going through this struggle, my brain began to work overtime. We had been told that she may try to fool us to get attention because she had just got a little sister and no longer got all the attention, but my mother’s brain continued thinking and wondering. I went back to our GP and asked that she please refer Xuané to a paediatrician that could resolve the problem.
We were referred to Dr Adri van der Walt at Panorama Medi-Clinic in Cape Town. We were only able to get an appointment with her in the third week of January. The appointment loomed ahead of me like a mountain and I remember how anxious I was about going, but I persevered. We arrived at her offices, and the moment she saw Xuané she told us that there was something stuck in her spinal cord.
I liked her immediately because she got right to the point. We had never spent so long in a doctor’s office before. Xuané was left to play with the toys while the doctor first spoke to my husband and I; she first took down our medical history and asked many questions. Thereafter she examined Xuané and told us that she would like to admit Xuané because although she could not physically see anything wrong, she wanted to do further tests just to make sure everything was alright.
Xuané and I were admitted to the paediatric ward at Panorama Medi-Clinic with absolutely no idea of what awaited us. Xuané was sent for blood tests, ultrasounds and x-rays the same day. During her ward rounds the next morning, the doctor told me that she could not pick up anything from those tests, but that she would like to do an MRI to investigate further.
An MRI was arranged but because one has to lie absolutely still and the machine is terribly noisy, the doctor felt it was advisable to examine Xuané under anaesthesia. I completed forms for anaesthesia for a second time. The MRI was done and Xuané came to approximately 45 minutes later. She was very confused and I told her not to worry, “Mommy is with you and I will not let anyone hurt you.”
Once back in the ward, Xuané slept the anaesthetic off for most of the day, giving me bit of a chance to rest as well. Of course, my phone rang incessantly and messages kept on coming through from family and friends who were also concerned about the results.
During evening ward-rounds the doctor informed me that the neurosurgeon would come and see us the next day because they found a mass in her spinal cord but did not know what type of tumour it was. My heart sank and I did not know what to do with this news. I could not sleep that night but was strangely also at peace because now at least we knew what the problem was.
The neurosurgeon came to see me the next morning, and he even showed me the x-rays. He suggested that we identify the tumour first before anything further could be done, but to identify it meant a biopsy and that meant… operation.
I phoned my husband and told him what the doctors had suggested and told him that he should come so that we could decide what to do. I phoned my mother and my in-laws and they immediately decided that they also wanted to be there and flew down from the Transvaal to support us.
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 3 of Xuané… a Reason to Smile tomorrow…
Posted on 2 September, 2015, in Blog, Onco Parents and tagged Anaplastic ependymoma, childhood cancer, Childhood Cancer Awareness, Childhood Ependymoma, Ependymoma, Little Fighters Cancer Trust, Xuané. Bookmark the permalink. Leave a comment.