Xuané Niewenhuis ~ A Journey with Childhood Cancer
This is the story of a beautiful little girl who was diagnosed with Ependymoma in 2010 and her and her family’s journey through what having this rare childhood cancer meant to them all. Some of the story and the photos may not be that pleasant to hear or look at, but we share this story with the permission of the Niewenhuis family in order to bring awareness regarding Childhood Cancer to the public in general.
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 and enlightenment to other parents.
Xuané began experiencing severe bladder infections, leg-pain and constipation in the latter half of 2009, which prompted her parents to seek medical help and advice. They took Xuané to see a urologist in Cape Town where they were living at the time, and he suggested a small operation to assess what the problem was. He suspected that it could either be a problem with her kidneys or an under-developed urethra.
Xuané went for the cystoscopy in October 2009, but the bladder infections continued and so did the fortnightly visits to the doctor. By the time December rolled around, Xuané was struggling to walk and could no longer run. After the 4th visit to the doctor, Xuané was referred to Dr Adri van der Walt at Panorama Medi Clinic.
Dr van der Walt admitted Xuané to the clinic for a whole battery of tests, including blood tests, x–rays and sonar’s – still they could find nothing. In January 2010, Xuané went for an MRI scan under anaesthesia, which showed a tumour situated in her lower spinal cord. Xuané was then referred to a neurosurgeon, Dr N Fisher-Jeffes.
Dr Fisher-Jeffes could not tell whether the tumour was a hard substance or a gel–like substance, and even though it was risky because the tumour was intertwined with her nerves, he suggested an operation to remove it. The operation carried the risk that the nerves could get damaged, which would mean that Xuané wouldn’t be able to walk again and would have no control over her bladder and colon, but what were the alternatives?
Xuané underwent a 4 hour operation on 2 February 2010, but unfortunately the tumour could not be removed; Dr Fisher-Jeffes could only get sufficient for a biopsy. Xuané lay in ICU for 4 days with a very high fever that wouldn’t break, after which she was moved to the paediatrics ward. On the 10th of February 2010, Xuané was referred to Dr J Parkes at Groote Schuur Hospital.
Xuané was seen by Dr J Parkes on the 11th of February and diagnosed with Ependymoma.
Childhood Ependymoma is a very rare type of cancer in which malignant (cancer) cells form in the tissues of the brain or spinal cord.
The brain controls vital functions such as memory and learning, emotion, and the senses (Hearing, Sight, Smell, Taste, and Touch). The spinal cord is made up of bundles of nerve fibres that connect the brain with nerves in most parts of the body.
Ependymal cells, which line the ventricles and passageways in the brain and the spinal cord, manufacture cerebrospinal fluid (CSF). Ependymomas form from these cells.
According to the World Health Organization (WHO), there are four main subtypes of Ependymoma:
• Subependymoma (WHO Grade I)
• Myxopapillary ependymoma (WHO Grade I)
• Ependymoma (WHO Grade II)
• Anaplastic ependymoma (WHO Grade III)
The grade or Stage of a tumour describes how abnormal the cancer cells look under a microscope and how quickly the tumour is likely to grow and spread. The higher the Grade/Stage, the more quickly the cancer will grow and spread.
Ependymomas can form anywhere in the passageways and the fluid -filled ventricles of the brain and spinal cord. Most ependymomas form in the fourth ventricle and affect the cerebellum and the brain-stem. The part of the brain that is affected by the tumour depends on where the Ependymoma forms.
The areas of the brain that can be affected by Ependymoma are:
Cerebrum: The largest part of the brain, at the top of the head. The cerebrum controls thinking, learning, problem-solving, speech, emotions, reading, writing, and voluntary movement.
Cerebellum: The lower, back part of the brain (near the middle of the back of the head). The cerebellum controls movement, balance, and posture.
Brain Stem: The part that connects the brain to the spinal cord, in the lowest part of the brain (just above the back of the neck). The brainstem controls breathing, heart rate, and the nerves and muscles used in seeing, hearing, walking, talking, and eating.
Spinal Cord: The column of nerve tissue that runs from the brain stem down the centre of the back. It is covered by three thin layers of tissue called membranes. The spinal cord and membranes are surrounded by the vertebrae (backbones). Spinal cord nerves carry messages between the brain and the rest of the body, such as a message from the brain to cause muscles to move or a message from the skin to the brain to feel touch.
Xuané was diagnosed with Anaplastic Ependymoma, Stage III. She had Ependymoma of the Spinal Cord, which later spread to her abdomen.
Xuané’s Oncology Team decided to treat her tumour with intensive radiation therapy Monday–Friday for 6 weeks.
Xuané’s radiation therapy started in March 2010 and continued until 22nd of April 2010. During this time her condition improved rapidly and she once again started walking and even running. She stopped taking cortisone and eventually ceased all pain meds. Six weeks after this treatment Xuané went for a post operation/radio therapy MRI under anaesthesia, which showed that the tumour was still present but smaller.
Very relieved, the Niewenhuis family moved back to Witbank in August 2010. Unfortunately the bladder infections and constipation started again, and Xuané was taken to see oncologist Dr C Jacobs in Pretoria, who scheduled another MRI. This showed some signs of the old tumour and some water retention, which it was thought was the reason for the recurring symptoms. It was decided not to do anything at this time, but a month later the symptoms got worse and another MRI was scheduled.
This time the news was not as good; the tumour had grown! Xuané was referred to neurosurgeon Professor J Mennen, and another operation was scheduled for 26 November.
This time Xuané was in theatre for 5 hours and then in ICU for 3 days, thankfully with no fever like the previous time. Unfortunately this operation resulted in Xuané not being able to feel when she needed to urinate or vacate her bowels, and had to wear pull–up nappies. She went through between 13 and 15 per day and still struggled with bladder infections.
Xuané was put on chemo therapy after the operation until June 2011. For the next year things went better then worse, then better again. The constant discomfort, pain and longing to join her sister at play were clearly sketched on Xuané’s face, but so was the ever-present smile for which she became known.
If there is one thing that everyone will remember this Angel Child for it is her positivity, her smile and her “never give up” outlook on life.
There were also some good times to remember though….
At the end of April 2012, the oncologist gave Xuané’s family the news that no family ever wants to hear; there was nothing more they could do for Xuané from a medical point of view, and she had a maximum of 2 years to live.
An insight into how this diagnosis affected Xuané’s family can be clearly felt in this excerpt of a letter her mom, Theresa, wrote entitled “Help, a Mother in Need” (translated) and pasted on her facebook page Bid vir Xuané Nieuwenhuis on 1 August 2012:
“These days things are getting more difficult; I see new things every day, stress is beginning to take its toll on me. My last call from the oncologist was at the end of April when she told me they cannot do anything more for my child and that she has a maximum of 2 years to live.
These days I can see more and more how she yearns to play with her sister, to use the toilet like a “normal” girl, not to be in pain all the time… her legs are full of hole from the lack of blood circulation and it takes ages for the to heal.
I dream many nights of standing next to her grave, and when I awaken my pillow is sopping wet from the tears I have cried in my sleep. I am too scared to go back to sleep, to dream that dream agai, and then I realise that one of these days it will no longer be a dream. How will I react? Will I ever get over it? Will I ever again find peace and calm? Will I push my youngest away or hold her too close because I am scared of losing her too? These are questions that go through my mind every day I see her.
Do you know what it is like to know that you will never see your child matriculate; help her choose her matric farewell dress; experience her first broken heart; see her walk down the aisle, holde her first baby in her arms? Yes, it is easy to say be positive, and I am trying my best, but people I can see how my child’s health is getting worse; I see her tears of pain; I see the yearning in her eyes to go and play with her friends, the despondence when she has to be helped to do absolutely everything…
The other day she asked me “Mamma can’t Jesus just come and fetch me now so that your back will not hurt anymore? I can see how much your back hurts when you have to pick me up. HOW does one answer such a question? How do you look at your child and comfort her without tears in your eyes?
So I try to remain positive, but it gets more difficult by the day. Please forgive me the day that I look a bit dishevelled, but I am only human. Some days I will be more tired than others; some days I will be pale; some days I will get up with puffy eyes; some days it will seem as though I am on another planet; and some days I will not want to speak to anyone! Just give me a few days… it just means that reality has sunk in a bit deeper…
And so the cancer continued to take a toll on Xuané and on her family as well, because when a child has cancer it affects not only the child, but the parents and the siblings too. Cancer affects the family physically, emotionally as well as financially because there are the many, many hospital bills, the day to day purchases of special food and other items, and the daily medication bills too, and then we are not even mentioning the stress and heartache and the many sleepless nights.
Once a child has cancer nothing in that family is ever the same again!
Yet life goes on….
Here is a translated excerpt from a letter Xuané’s mother wrote on 20 December 2012:
A Mother’s Christmas Wish
Every mother’s Christmas wish is different. Mine starts with PLEASE DEAR FATHER, GIVE MY CHILD BACK HER HEALTH!
So, here is my Christmas Wish for you, My Child:
I remember the very first time I heard you moan and groan the day you were born; it brought a smile through my face through the pain because I knew we would share many laughs and tears from that day forward.
As you grew so did my love for you; I wish every day I could take your pain and discomfort away, but it is beyond my control. What I can do is make every day as comfortable for you as possible; to make you laugh and sometimes cry too, and to just love you for the dear child that you are.
I know that you often cry softly at night so that I cannot hear you; I know that you often look longingly at your sister running around and jumping up and down and climbing on things wishing and yearning to join her. My darling child, the Lord will not give you something that you cannot deal with; so it has been told to me and I believe it with my heart and soul.
So my dearest, even if you cannot run around, even though you cannot dance, even though you cannot climb and have fun, even if you cannot help yourself, just know that I am there to help you and to care for you as much as I can.
You have been through so much, achieved so much in your 6 years – you are the ultimate! You open people’s eyes, you give people hope and strength for tomorrow, and you my child, with your smile and your beautiful face open people’s hearts to miracles every day.
My Christmas Wish for You:
May you enjoy the fruits of everything you do; May you get the health that you long for; May you experience the pleasure in every precious moment and may you always be my little Xuanetjie. You are my inspiration, and you help me to be a better mom for you and sister.
2013 & 2014
The next two years were pretty much the same, with little Xuané fighting the cancer that was eating her alive yet still for the most part smiling and acting like any other little girl, within the confines of her wheelchair and the constant pain and discomfort.
Parents and friends and family rallied around and there were many outings and parties when Xuané’s health allowed for it, and at other times she just relaxed and gathered her strength. There were more trips to doctors and to the hospital, and more medications to make her as comfortable as possible, and so the days went by.
Unfortunately in the early hours of 24 October 2014, Xuané lost her battle with cancer and went where all little angels go… to a better place where she is free of cancer; free of pain; and where she can run free like all other little children.
Here is a (translated) piece that Xuané’s Mom wrote on 23 December 2014
I Will Light Candles, but I will not be Festive
I have never been so scared of Christmas.
The thought that I cannot wake you up with a present or a kiss on your forehead,
Or give you coffee and rusks…
It scares me.
You always loved this time of the year so much;
You counted off the sleeps and always said,
“I wonder what T-tjie… oops…. Father Christmas, is going to bring this year”
… You always told me afterwards that T-tjie’s pants were torn or his beard was skew
And then we would giggle, you and I.
… And Lanie that dressed so funnily like an elf with the pointy shoes…
This year we are not going to have those conversations,
But know that I will not stop thinking about you for one minute.
I will look for whatever is funny
And will whisper it to you.
I will eat a rusk to you
And will send two kisses up heavenwards.
My child… this mommy’s heart is soooooooo sore.
The day that I went on my knees and asked Jesus to relieve you
From all this unbearable pain and discomfort, I had no idea what was waiting for me.
I knew that I would not be able to kiss or tease, or just cuddle you anymore,
But I never realised that I would be doing everything WITHOUT you.
It hits me squarely in the face every day;
I opened your cupboard last night –
As Aunty Lisl says – RIPPING OFF THE BANDAID –
I stood in front of you cupboard, because that is my pain that
I picked up every shirt and smelled it with the hope that I would smell you.
I touched and held every single thing that you had ever touched
With the hope that I would feel you again
But it is as though everything is “blank” –
Your room is so empty…
You may be gone my Bekkie, but never forgotten
Mommy thinks of you every day;
Misses you unbelievably lots
And wishes for just one more moment with you
You were my Superhero…
Someone I looked up to…
Always ready with a smile.
Love you Bekkie Flower ~ Forever and Always!
Xuané you were and will always remain an inspiration to all those who knew you and those who didn’t know you but knew of your battle. You will always be remembered as a brave Little Fighter, and you and your family will always be part of the Little Fighters Cancer Trust family.
Our thoughts, our love and our prayers go out to Mom Theresa, Dad, Sister Mia and the rest of the family.
Fly High, Angel Child
¸.•´¸.•*¨) ♡ ♡
(¸.•´♡;..•´;¸¸.•¨¯`•♡ ♡ ♡
Posted on 6 January, 2015, in Blog, Onco Parents and tagged Anaplastic ependymoma, childhood cancer, Childhood Cancer Awareness, Childhood Ependymoma, cystoscopy, Ependymoma, Little Fighters Cancer Trust, urologist, Xuané. Bookmark the permalink. 1 Comment.