Celebrating Reece Barends – Neuroblastoma


NeuroblastomaSeptember is International Childhood Cancer Awareness Month and once again the Little Fighters Cancer Trust is hard at work sharing everything we can regarding Childhood Cancer and trying to raise Childhood Cancer Awareness by sharing information and Personal Stories with you.

Today we are  sharing a brief version of Reece Barends’ story with you, as written by his mother, Ashleigh Barends aka da mamma

The Little Fighters Cancer Trust would like to sincerely thank Ashleigh for sharing Reece’s story with us in the hope that it can help other parents who have children that are ill but are not sure what the problem is, and to raise Childhood Cancer Awareness so that earlier diagnosis can be done.

We will continue to publish more poems and stories by Onco Parents throughout this month as we work hard to bring Childhood Cancer to the fore and spread Childhood Cancer Awareness – all in the effort to inform and educate other parents to the ravages of Childhood Cancer and to remind everyone that

The Best Defence against Childhood Cancer is Awareness and Early Diagnosis

 

reece

Reece’s Journey

21 March 2014

Reece was born on the 16th of March 2013. He was a blessing and an amazing child from the moment he took his first breath. Reece developed very well from the beginning, growing at a rapid rate and always developing mentally quicker than other babies his age. One thing that he always had problem with though, was sleeping. He never slept well and I always had a feeling that something was bothering him.

When Reece was about 6 months old, he did this very strange arm-twitch motion added with an eye flicker. He did it on and off for a week, but only I saw it, and when I mentioned it, everyone said not to worry as it’s just his muscles growing. He never did it again so I forgot about it.

Then when Reece was 8 months old he had a mini seizure. He was playing and he just passed out and went limp for about 8 seconds added with the eye flicker again. We took him straight away to the doctor who sent us to the paediatrician who sent us for a brain wave scan. They felt he might have epilepsy. The brain wave scan came back normal, and as Reece was developing so well they told us to just watch him.

Although Reece was developing well, he still wasn’t crawling yet, which was a concern but we were told not to worry as every baby develops differently, and Reece was very active in his walking ring, scooting around like a pro!!

In the beginning of December 2013, two weeks before Reece turned 9 months he was very unhappy. He screamed day and night, and slept even less than normal. We went to the doctor who said it must just be his teeth as he was cutting two teeth at once.

It was terrible to see my little man in so much pain, nothing I did soothed him. Then one Friday morning we woke up, I put Reece in his ring, and he just stayed still. He didn’t move one inch.

I then took him out and put him on the couch, but he couldn’t sit anymore, he just flopped over. I tried to pull him up onto his legs to stand as he had been doing for a while, but he couldn’t stand.

The pain he had been in seemed to also have subsided. This was very concerning. I also noticed a small bruise on his back, so I assumed he had somehow hurt himself. We waited the weekend, but by Monday he was still no better, so off to the doctor again. She seemed very concerned and sent us to the paediatrician again the next day, who was also very concerned and sent us to Tygerberg Hospital on the 13/12/13 for an MRI scan.

He had to be put under anaesthetic to have the scan which was scary. While he was in recovery from the MRI, the doctor came to tell us that they had found a tumour on his spine. The tumour would have been growing for a while and would have been the reason for all the pain over the last 2 weeks. They would remove it the next day and were confident they could remove it all, and send it off to be tested for a diagnosis. We were told that they couldn’t promise his mobility would return and the operation itself was not a guarantee that he would survive as is with all operations on a baby.

That night was the worst night of my life! I was so worried about Reece and the operation, and so worried about his future mobility.

The next day, they took bloods from Reece, it was so scary seeing my child’s blood for the first time and he was screaming as they help him down. My poor child.

Just before they took him in to theatre, the doctor came to tell us something that would change our lives forever, and show us that what we were feeling the last day was nothing in comparison to what we were about to be told….

They had initially only seen the little tumour on his spine, but on further inspection of the MRI, they saw a large tumour that was covering his left kidney, pushing against his aorta, his lung and then pushing through his spine. It was an extensive tumour and only the small part on the spine could be removed. The rest would need chemo after the biopsy was done and other rests to stage the cancer, but the preliminary diagnoses was Neuroblastoma cancer. It was hard to say without more testing but they gave Reece 40% to 70 % chance of surviving this very aggressive type of cancer.

With that bombshell Reece was sent off to theatre. I went with him, stayed with him until he was asleep, and then turned to leave my angel with strangers armed with scalpels. I have never been so scared and so devastated in my entire life. Never in my wildest dreams had I ever imagined I would be going through this as a new first time mother.

After the longest four hours of my life, not knowing if I would ever hold or see my smiling child again, they called us in to say the operation went well, and he was in ICU recovering. We went in to see our baby boy with tubes and pipes coming from everywhere – but he was breathing!!

The next day he was sent to the Paediatric Oncology Ward – 3 words that should never be put together!!

The following week they did numerous tests, including a bone marrow sample from his hips, another full MRI of body and brain, bone scan, blood tests etc. etc. He had a total of 4 anaesthetics!

After the week we were told Reece had Stage 3 Neuroblastoma, which means it’s too large to operate, but it’s not in the organs, bone marrow, or bones. The cancer is just localised to the one large mass, and it explains why Reece has never slept well. He has probably felt pain for most of his little life. This explains why it was too painful to crawl.

He needs 6 months of Chemotherapy, and then another operation to remove what’s left. To date Reece has received 4 chemo treatments and he has been hospitalised 3 times in between chemos for infections due to chemo side effects. Blood counts are done almost weekly.

He has had a port inserted into his chest which is a central IV line that they use for chemo, as his little veins couldn’t handle the drips. At one stage he had bruises and burst veins on both hands and feet and it was becoming very painful and traumatic for him and me as I go in with him for every single prick, prod or procedure.

The port makes things easier, but the chance of infection is higher due to this being a foreign body, so we have to keep a very close eye on our little hero all the times, constantly checking his temperature, lumps, bumps, rashes and abnormal behaviour. The hardest part of this is not knowing if a symptom is chemo related or a normal behaviour of a growing baby.

He is semi-housebound as we need to be very cautious of him as even catching a common cold could kill him if his blood counts are too low. We have to make his home the most entertaining, happy place there is and we do. We have the most fun at home and Reece loves his life, he doesn’t know that there is anything wrong in his life. His life is full of fun, laughs and love. We love to laugh as much as we love to cuddle and kiss.

Reece gets sick from chemo, loses his appetite and throws up. He has lost weight, but has never lost his smile. He has regained movement back in his legs and is now crawling and standing up.

This journey is very hard, draining and financially crippling, but our amazing child keeps us going as much as we keep him going. He is a huge inspiration and I have learned more from my child already than I have ever thought possible.

This journey has taken me to places I never knew I had the strength to go, and has made me stronger and our angel stronger too.

He will survive, we will survive and we will all look back and thank each other for all that we did together, as a unit, as a family. Love and faith will conquer all.

Love is what makes us wake up and fight each day with all the power that we fought it the day before. The end is near; I can see the light at the end of the tunnel. It shines as bright as the love in my heart for my angel, my warrior, my hero, my Reece.

18 June 2014

Reece has completed 7 rounds of chemo and his scans show no tumour!!! Rejoice!!!

 7 Dec 2014

Today, as I look around my Facebook at other kids still fighting cancer, I must remind myself not to sweat the small stuff. People out there fighting real battles. All of us, no matter who we are, our lives could change in an instant.

You must always rejoice everyday that you wake up and your family is healthy. Love more, play more, laugh more and don’t sweat the small things. Your life could change at any time, and then you look back and regret spending time fighting or stressing over insignificant stupid things. Live each healthy day to its fullest, filled with love, patience and respect and laughter.

Written by Ashleigh Barends aka da mamma

 

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About LFCT

This is a blog about CHILDHOOD CANCER and CHILDHOOD CANCER AWARENESS Little Fighters Cancer Trust is a non-profit organisation that offers support and aid to Children with Cancer and their families. When a child is diagnosed with cancer it affects the whole family. One of the parents, usually the mother, must give up their job to care for the child and this creates financial problems for the family. In South Africa especially the majority of these families are not well-to-do; many of them are rural. A diagnosis of cancer can wipe out any family’s finances, let alone a poor family. The costs of special medications, special diets, hospital stays, transport to and from the hospital or clinic and accommodation and food costs for the mother who spends most of the time at her child’s bedside are astronomical. These are the people and problems that fall through the cracks, and these are the people that Little Fighters Cancer Trust has pledged to help in any way possible. LFCT takes a holistic approach to assisting the Children with Cancer and their Families, with the main aim to be the preservation of individual dignity and pride. Little Fighters Cancer Trust also focuses on promotion and advocacy of National Childhood Cancer Awareness in an effort to increase awareness of Early Warning Signs of Childhood Cancer. This would result in earlier diagnosis, giving the Child with Cancer more of a chance at Treatment and Survival. See "About" for more Background info

Posted on 19 September, 2016, in Blog, Onco Parents and tagged , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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