Honouring Ryan Nel – RhabdomyoSarcoma (Part 5)


Stop Childhood Cancer signSeptember is International Childhood Cancer Awareness Month, and apart from our normal posts, LFCT will also be bringing you some stories and poems from our Little Fighters and their Families through the course of the month.

Today we would like to bring you Part 5 of an edited version of the life-story of Ryan Nel, as written by his mother, Michelle.

The Little Fighters Cancer Trust would like to sincerely thank Michelle for sharing her family’s heartbreaking 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 publish the full story entitled “Our Road with Cancer – an Ode to my Son” at a later stage when there is more time to translate it in full.

 

The Next Bomb Explodes

18th May and the results of the CT scan are in – and it is not good news! There is a small node in Ryan’s right lung – the left lung is clear. It could be some leftover cancer or just a mark… we have come too far… need to stay strong.

Because it is in the middle of the lobe they cannot do a biopsy and radiation is also not an option. An MRI Scan of the head and neck follows and it shows that there are still irregular contrasts around the area of the primary tumour. Another visit to the ENT specialist will confirm what it is.

This final result is the death-blow and Ryan’s father also takes the “package” at work so that they can both spend as much time with Ryan as possible… there is really no choice…

The ENT specialist confirms that there is no cancer in the throat, and the oncologist arranges for a PET Scan, which is far more accurate and scans the whole body, to be done in the Cape – Medical Aid takes more than a month to approve it.

Ryan takes his first trip in an aeroplane to the Cape, and the PET scan is done… spend some time relaxing in the beautiful Cape while waiting for the results… they are not good!

Just as we thought everything was over we are told that it is starting all over again – the cancer is back in both lungs! Guilt feelings that we did not just have the scan done immediately for cash… we know we should not blame ourselves, but it is only human…

The surgeon tells us he will be able to cut the cancer out of the right lung but cannot operate on the other lung… on 11th August 3cm is cut out of the left lung and we have hope again but are caught in a spider’s web…

ICU… lots of pain etched on Ryan’s face but he is such a brave Little Fighter that he gets a “Certificate of Courage” – physio twice a day and 6 days later it is back home again but unfortunately this relapse meant that Ryan would not be able to go back to school in the third term.

Three weeks post-op… Frustration at not being able to go back to school, frustration at not being able to see friends or go out anywhere for fear of infection… playing in the yard with your brother and suddenly there is a   commotion…

 

Accident-Prone

Ryan fell badly and broke his wrist… typical boy, he was grinning at having a cast on his arm… such a pity that he could not show it off to all his friends and get them to sign it like any other boy would…

The realisation sets in that Ryan will have to repeat Grade 6 – difficult to accept but that is just the way that it is…

A lung-infection lands Ryan back in hospital mid-September… x-rays show that the right lung is full of fluid… strong antibiotics and 5 days in hospital… draining the lungs periodically… 500ml of fluid drained on 19th… what more can be done… problems… membrane over the lung prevents drainage… not good!

22 September… another CT scan at Greenacres… the results are the worst that they could be… Ryan is terminal…

Nothing more can be done for Ryan… rivers of tears… hearts shattered in a million pieces… WHY?? WHY did this happen again?

The next hour was the worst one that anyone could wish to experience – one that no parent wanted to ever have to go through…

 

HOW do you tell a Child that he is going to DIE???

 

You sit on my lap and cry, and I wish I could change places with you. I will never forget your words; they still go round and round in my head every day… I cannot get them out of there. My soul is destroyed

Mommy I don’t want to die now already; I have not lived long enough.

Mommy I want to be with you and Daddy.

Mommy look on the internet and see if there isn’t something that can save my life.

I promise, my child, I will do everything in my power to try to find something

 

Back home again with loads of pills and morphine – the best that can be done to ensure minimal pain and that the cancer does not spread too quickly…

 

Prognosis: Maybe 6 months…

 

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

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