Xuané… a Reason to Smile Part 3
17 August 2006 – 24 October 2014
a Reason to Smile
Theresa Botha Nieuwenhuis
2009 – 2013 (continued)
The next morning we went to the doctor’s surgery and he explained the operation to us and told us what he wanted to do. He was very direct and honest about all of the positive and the negative things that could happen; she could be paralysed… she could lose control of her bladder and colon because they would have to operate very close to the nerves…
We signed the forms and the doctor scheduled the operation for the Friday morning. He told us to prepare ourselves for a very long wait because it could take up to 8 hours to remove everything with such an operation.
I went into the theatre with Xuané who was already very drunk from all the pre-meds that they had given her. We hosed ourselves laughing at her because she was giggling and making silly remarks. I went in with her and held her while the anaesthetist gave her the anaesthetic. She fell asleep slowly, and for the first time ever, I felt completely powerless. I had to lay her down so that everything could be connected, but it felt as though my arms did not want to let her go – I was not ready for this – I was not ready for all the side-effects that the doctor had warned us could occur.
The sister led me out of theatre and said, “Go and have a cup of coffee and something small to eat – she is in good hands.”
The theatre doors closed behind me and the emotion enveloped me like a thunderstorm. I started crying incessantly and my mother and husband were there to comfort me, but how does one comfort a mother who just put her baby on a bed where she will be cut open and hurt? I promised her I would not allow anyone to hurt her. I realised I had broken my promise to her, and that broke me even more.
We went to eat something and drink some coffee but I could not quiet my mind. I only wanted to be in one place and that was with her, next to her… I needed to protect her from all who wanted to hurt her.
We went up to the waiting room and just wandered about. She was wheeled out after four and a half hours and went directly to intensive care. We had to first wait for the doctor and sisters to make sure everything was alright, and then the sister came out told us we had to wash our hands before we could see her.
It was terrible to walk in there and see all those people hooked up to machines… is my child also on machines… is my child also full of pipes and wires? But still my legs carried me forwards and there she lay… a few pipes but she was okay. I went to stand next to her and told her “everything is going to be alright, my Bekkie, Mommy is here.” Everyone got a turn to see her then the doctor called me in to discuss the operation.
He told me that the operation had not been a success; he could only get enough for a biopsy but could not remove the whole tumour because it was too hard and was situated right in the centre of all the nerves.
He explained to us that the nerves are like a horse’s tail and the tumour was in the middle of them; it was impossible to remove everything as that would mean that she would never walk again – she would be paralysed from her navel down. He told us that he thought it was an ependymoma but he did not know whether it was malignant or not, and that only the tests that were to be done on the biopsy could determine whether it was malignant or not.
After spending four days in ICU with a temperature, Xuané was moved back to the paediatric ward. On the 8th of February 2010, the paediatrician and the neurosurgeon called me in for a chat. The results of the tests were back and the doctors sat in front of me like a panel… I felt as though I was sitting in front of a jury waiting to be sentenced to jail any minute.
The neurosurgeon informed me that it was an ependymoma and that it was Stage 3 – I had no clue what that meant at the time… I remember I was calm and just said, “Okay, how are we going to proceed?” The doctors just looked at me and then told me that she would have to be referred to an oncologist who would discuss further treatment with us.
An oncologist? What is that? Yes… I did not know… I said, “Okay, when can we see the oncologist?” and they told me that we would be seeing her on the 11th of February. I phoned my husband and told him what was happening and he said fine he would be there. I phoned my mother and the minute I mentioned the word oncologist she immediately said “That is a doctor that specialises in cancer.” I was dumbstruck, but told her that we should not worry about that now but should first see what the doctor had to say.
Later that night a woman who was also there with her child came to me and said she was sorry to hear. I was a bit upset and irritated and asked her what she was sorry about, and she told me that she had heard that my child had been diagnosed with cancer – I immediately denied this and told her that she obviously had the wrong information and was immediately very upset. But I couldn’t help wondering…
The next morning the paediatrician came around on her ward-rounds and I asked her, “Does my child have cancer?” She shook her head and told me that it is a type of cancer but that she could not expand on that because it is the oncologist’s domain and she could not interfere.
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 4 of Xuané… a Reason to Smile tomorrow…
Posted on 3 September, 2015, in Blog, Onco Parents and tagged Anaplastic ependymoma, childhood cancer, Childhood Cancer Awareness, Childhood Ependymoma, Ependymoma, Little Fighters Cancer Trust, spinal cord tumor, spinal cord tumour, Xuané. Bookmark the permalink. Leave a comment.