Xuané… a Reason to Smile Part 4
17 August 2006 – 24 October 2014
a Reason to Smile
Theresa Botha Nieuwenhuis
2009 – 2013 (continued)
On the morning of the 11th of February my husband and I went to the oncology department at Groote Schuur Hospital with little Mia in her carrycot and Xuané on my hip. We were led to a small room where we were informed that Xuané had a rare type of cancer and that chemotherapy would have no effect on the type of tumour that she had.
They could give her radiation for 6 weeks and there was 3 ways that it could go; the first was that it could completely halt the growth of the tumour; the second was that it could halt the growth for a while and then the tumour would continue growing again; and the third was that the tumour would just continue growing unabated.
“Will she lose her hair?” I asked.
The doctor shook her head and said no, but the radiation would make her itch and very tired, and may leave a burn mark. I sat there with tears in my eyes, but because Xuané hated it when I cried, I held myself in check. Maximum radiation was prescribed, but it could only start 6 weeks after the operation as she had to heal first.
We returned home and informed everyone that Xuané had cancer and what would happen next. My husband was very quiet and asked if I was okay every so often… not for one moment did I ask him if he was all right… and about that I will most probably never find peace because he also got bad news; not only me, but because men and women handle bad news differently I never thought about how it affected him. My reaction was to burst out in tears and shout and rail, and his was to go very quiet, actually to stay strong for the both of us.
We went through to the Cape a lot over the next four weeks as Xuané had to go so that they could make
the markings for the radiation, and a mould had to be made for her little face and body so that she could lie in the same position every time to ensure that the radiation was most effective.
It was also suggested that she be given a local anaesthetic every time, or perhaps just a syrup that would make her sleep through the process, but, Xuané being Xuané, she refused, as little as she was. She was very rebellious and fought against falling asleep. I asked if we could just see one time how she would react to the medicine; they agreed, and it worked like a charm – she lay there silently as we spoke.
Back home there were many arrangements that had to be made; I spoke with my employer and told him that I could either resign or I could complete the documentation in the evenings and e-mail it to them. They gave me 3 months off so that I could spend every day with Xuané during her radiation treatments – there are very few employers that are so compassionate.
I did not have a driver’s licence so I could not drive through to Cape Town and back on my own; we also realised that all the traveling to and fro would be very tiring for Xuané’s little body. Unfortunately my husband could not accompany us so we had to make another plan. We visited the paediatric ward where she would spend the weekdays (she would be out over the weekends) but decided against it as I felt that spending 6 weeks in a hospital day and night would just be too much to handle.
Our family decided that they would support us during this period by taking turns to fly up and stay in the guesthouse with myself and the children so that she could get her radiation treatments. My mother-in-law came up for the first two weeks and my parents and sister and co. came up for the third and fourth weeks; my other sister came up for the fifth week. I would have spent the last week in the CHOC house but the accommodation arrangements were not made by the hospital as required, and they were fully booked. My mother-in-law flew up again for the last week to drive us around.
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 5 of Xuané… a Reason to Smile tomorrow…
Posted on 4 September, 2015, in Blog, Onco Parents and tagged Anaplastic ependymoma, cancer treatment, childhood cancer, Childhood Cancer Awareness, Children with Cancer, Little Fighters Cancer Trust, spinal cord tumor, spinal cord tumour, Xuané. Bookmark the permalink. Leave a comment.