Honouring Ryan Nel – RhabdomyoSarcoma (Part 4)


ryan-nel-2015-05-11September 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 4 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 Way Forward

2015 begins rather quietly for the Nel family as Ryan is still not allowed to see friends for fear of infection again, although a nice lunch out on New Year’s Day makes for a great time as it is the first time that the whole family has been able to be together outside of a hospital for many months.

Another change to the Treatment Plan means Chemo through only until the middle of May – jubilations at the shortened therapy period. April will bring medication to build up the immune system and promises of a return to school by the third quarter.

Back to hospital for chemo via the hand again as the port is once again not working – night terrors and Ryan pulls the needle out of his hand…

Dad on leave again so he can spend the nights with Ryan in the hospital… back home again, stress levels high… more blood tests… more mouth sores… more blood transfusions… more problems with the port… more chemo…

Platelets dangerously low again… back to hospital… drips… antibiotics… infections… bone marrow problems…  more injections…  stress… fatigue… many tears… losing too much weight… swollen mouth… increased feeding via stomach tube… port fixed and working again… bedsores…

Back home on 27th January; a bit weak still but at least a kilogram heavier, and so life goes on…

Back to hospital for more chemo on 2nd January… terrible pain in one leg… pain meds… fatigue… depression… nausea… vomiting… home again on the 4th.

Struggling to carry on with life… sleeping a lot… struggling with homework… especially during load-shedding when there is no electricity… nerves on edge…

First visit to physiotherapist as Ryan’s stomach and leg muscles are very shortened and he needs to work on his balance as well. The diagnosis of Peripheral Neuropathy is confirmed – actually good news as it means no need for surgery.  Daily brushing of the legs – by candlelight as there is no electricity – with a special brush for sensitivity. Physio 2-3 times a week… lifts the spirits as the feeling is that headway is being made.

Brother’s 16th birthday should be a day of celebration but there is just no way to have a party or celebrate anything…

And so life goes on… at least Ryan has an appetite again, although his taste is changing regularly… right now sweet & sour chicken seems to be popular… anything as long as he is eating… we say thanks that he has put on 2.2 kilos…

Back to hospital for another 2 days of chemo and the oncologist pops in to say chemo has now been shortened by another month – Jubilations!

And so life goes on… almost feels normal…

 

The Last Chemo Session

Life between chemo and physiotherapy sessions is a bit crazy but things are going well under the circumstances and hope abounds…

Back to hospital for more chemotherapy… white blood cell count still low… must avoid public places again due to high risk of infection… at least Ryan’s weight has remained constant…

Mouth sores again… another course of antiviral pills… treatments now transferred to PE Hospital… raging temperature of 40° Celsius…  Fungal infection and Respiratory Syncytial Virus (RSV) – a virus that causes infections of the lungs and respiratory tract… intravenous antibiotics… Easter Weekend in the hospital…

Oncologist decides to continue chemo for a while… the port is not looking good…

Another Little Fighter dies and another mother cries for her son… very distressing for all concerned including Ryan…

More time off work for Mom but she loses her Medical Aid – fortunately Dad still has his – Mom stops work completely to look after Ryan…

At last – weeks later than it should have been – on the 13th – 14th April Ryan gets his last chemo and all everyone is waiting for now is to hear that one golden word, “Remission!”

For now, physiotherapy cannot continue as the viral infection is not healed yet… and it is going to cost R33 000 – which the Medical Aid needs to approve – so the wait continues…

21st April and the virus is still hanging around… more medication… platelets still not good… so life continues, as does the waiting…

Waiting for blood tests on the 11th May and CT scan on 12th May so we can talk about Ryan being in Recession…

 

cure-for-cancer

 

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

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