Honouring Ryan Nel – RhabdomyoSarcoma (Part 6)


ryan-nel- 2015-09-19September 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 6 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 heart-breaking 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.

 

Palliative Care

Palliative Care is basically focused on the easing of a patient’s suffering and the associated maintenance of quality of life, not necessarily on the healing of the patient.

Nothing to do but make the best of a bad situation; Ryan has a last short chemo session and is given a range of medications which include chemo pills and morphine. Weekly visits to the hospital for a check-up and lung x-ray – nothing is getting better but also not getting worse…

Reach for a Dream organised an outing for Ryan and 5 of his friends and he actually ate a meal for the first time – great fun was had by all – it was so great to see Ryan enjoy himself after being cooped up either in the hospital or at home for so long. Thank you for making children’s dreams come true – the small things in life are important.

Ryan’s cast is removed at last, and it is his turn to visit his grandmother in hospital where she has been admitted for pneumonia.

The medication is making Ryan break out in sores all over and despondency sets in…

28th October – Ryan’s 12th Birthday… his whole class comes to his birthday party and some of them recite their cultural day poem for him… loads of fun and games, singing and laughter… all fitted into a single hour as Ryan cannot handle longer…

Ryan’s chemo pills are out of stock! Nothing to be found in the whole of South Africa!!

9 November – no more x-rays has Ryan has already had too much radiation… a new course of medicine… no morphine yet because the pain has not started as yet… but it is there for when it is needed…

30th November and the next round of bad news – the tumours in both lungs have grown…

 

Deterioration

2nd December and the backache is bad so Ryan gets a bit of morphine… mother spends night after night on the internet looking for something that may help as promised… feed Ryan turmeric and ginger in capsules… difficult to swallow but will try anything that may help…

Suddenly during an outing Ryan gets ill and must be taken home… further parties cancelled… fatigue… weakness… desperation creeping in… drowning…

Dad drives into town every day – trying anything and everything natural in conjunction with a health shop…

Morphine every 4 hours now as the pain is unbearable…

Antioxidants… Omega 3… don’t know how much more you can handle… try the exercise bike… Frankincense Oil… Pumpkin and Apple Seeds… Spices… anything that may help…

We have been told the day is coming but we don’t care… we are still hoping for a miracle…

6 December – we try cannabis… it sometimes helps with the appetite but mostly Ryan just wants to rest…

Deterioration sets in… no interest… we still try anything… no appetite… sleep… nausea…

Ryan’s condition affecting his brothers badly – For the first time Robin cries, unable to control his tears and sits for hours on end with an ice-pack and helping Ryan with his back and to clear his lungs.

 Cancer is HARD on the WHOLE Family!!

 

Try a product of citrus peel and pulp to try build up Ryan’s immune system and build cells – terribly expensive but we are desperate… Ambrotose nutritional supplement is next…

17th December – slow improvement… minimal but a bit of hope… emotionally drained… dog tired… prayers… quality time…

Make suppositories of all the oils… less to try swallow… coughing… short of breath… … cannot shower or bath alone… incredible pain behind right lung… morphine… Deep Heat… oxygen…

20th December and Ryan has a bit of energy – actually showing a bit of interest in things, even walked in the house a bit… morphine doses getting less by the day… there is hope!

 

Christmas/New Year

22 December – Ryan’s hair is falling out again; decided to shave it off rather. Scaling back on medications and become selective… too much affecting his skin… Dad tells stories from his youth which serve to keep the thoughts off of the current Hell Ryan is going through.

25 December – Gratefulness that you are still with us – the best present we could have asked for! Wonderful but tiring day…

25 December – not a good day… fatigue… hallucinations…swollen lips… stay strong…

Things go downhill from here… swollen body… nothing to be done… doctors worried about dehydration if they drain liquid…

There are no celebrations for this family at New Year… Ryan permanently on oxygen now… eyes stating to get dim… a mother’s heart is breaking…

Sores in the throat… unable to swallow… permanent semi-sleep state…

The whole family is heart-sore… brothers also crying openly more often now…

8-16 January – the mouth sores have cleared up… sleep… watch Bible Stories… face and feet swollen… could be cancer of lymph glands… your feet are swelling because your heart is affected…

Camphor Oil and Tissue Salts to help a bit with the swelling… cesium… magnesium… nothing helps

Can’t speak… still shows a thumbs-up… skin sores turn into bedsores… doctors stop medication… can’t eat… can’t walk… totally bedridden now…

 

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

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