Xuané… a Reason to Smile Part 5
17 August 2006 – 24 October 2014
a Reason to Smile
Theresa Botha Nieuwenhuis
2009 – 2013 (continued)
Xuané’s radiation began on the 8th March and because she was still so young we were always helped first. We met many women that were there for radiation for breast cancer, and the aunties immediately took to and befriended Xuané. We had to bribe her, like any other child, to work with us – a Wimpy breakfast and a walk in the mall thereafter did the trick! It was nearly Easter so the malls were festive and full of Easter eggs.
During the second week of her radiation treatments, another little girl came who would get radiation on a Monday and would get chemotherapy the rest of the week for abdominal cancer. She was just 6 years old, and my first thought was “so it’s not just my child who has cancer.”
Xuané was on a very high dose of cortisone which made her bloat terribly, and I had to buy her bigger clothes so that she could be comfortable. And so the weeks of radiation passed; I could already see how much better she was getting by the third week. She was running around and playing and giggling, and that sound was the most beautiful sound that I had ever heard. That little giggle of hers could get everyone laughing and she had a way of crinkling up her little nose when she laughed that was just too cute for words.
They lessened the dosage of cortisone over the six weeks and eventually the bloating subsided. We went back to see the oncologist on the last day of radiation and she told us that we would have to come back after 6 weeks for a follow-up MRI to check whether the radiation had been a success or not.
It was wonderful to get back home and get back to normal after spending six weeks in a guesthouse; it was as though the mountain had got a bit smaller and the despondency had disappeared. I went back to work and Xuané went back to kindergarten like a normal girl.
We returned to see the oncologist at Groote Schuur Hospital on the 4th of June and she examined Xuané and was very happy with her progress. She scheduled an MRI at Panorama Medi Clinic and on the morning of 16th June we were once again admitted and she again underwent the MRI under anaesthesia.
We waited patiently in the ward for the results, having learned from previous experience that we had to prepare ourselves for the worst then the shock would not be that great, even though it is still a shock. The doctor informed us that Xuané’s tumour had shrunk. We were so elated and relieved that it felt as though a little bit of Heaven had come to earth; all I could do was cry and thank God.
We were sent home, and for the first time in 8 months I could at last share some good news with the family. Everyone was so pleased that the news spread like wildfire between our friends and family.
We continued like a normal family for a change, but by August things were not going that well between my husband and I, so we decided to part ways for the time-being; the children and I moved back to the Transvaal and lived with my parents for a while.
I watched Xuané with an eagle-eye, in the hope that we had actually beaten the cancer and that this obstacle had been just another bend in the road that we would also overcome. We had been warned that something like what we had just been through could put a major stress on one’s marriage, but I had not wanted to believe it; nothing could come between my husband and I.
By September Xuané’s symptoms had returned and I expected the worst. We were referred to Dr Reynders at Unitas Hospital, but I did not phone his consulting rooms that day; I had heard about another doctor, a woman doctor that was very gentle with children and who would do everything within her power to sort out any problem. I decided to phone her instead of Dr Reynders.
I spoke to Dr Charmaine Jacobs and explained everything to her and she said we should do another MRI just to make sure that everything was 100% alright. On the 13th October 2010 my stepfather and I took Xuané through to Unitas and she again underwent an MRI under local anaesthetic. Once again we waited to speak to the doctor once Xuané was finished, but deep in my heart I was very uneasy because why did I have to go through all this again… it felt like a circle without end.
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 6 of Xuané… a Reason to Smile tomorrow…
Posted on 5 September, 2015, in Blog, Onco Parents and tagged Anaplastic ependymoma, childhood cancer, Childhood Cancer Awareness, Childhood Ependymoma, Ependymoma, Little Fighters Cancer Trust, MRI, radiation, radiation treatment, Xuané. Bookmark the permalink. Leave a comment.