Honouring Ryan Nel – RhabdomyoSarcoma (Part 3)
September 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 3 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.
More Operations and Radiation
Ryan went back for blood tests on 21st July and the counts were not good so the operations were delayed. In the meantime visits to the radiologist and a counsellor were the order of the day, and Radiation Therapy was scheduled to begin on 7th August – 5 sessions per week for 6 weeks.
Another scan of the head and neck on 24th July and the making of a mask so that the radiation hit the exact spot followed. The port was exchanged on 4th August @ St George’s Hospital and a blood clot was soon dealt with and an abscess was cut out of Ryan’s neck. A feeding tube was also placed in his stomach.
Radiation Therapy started on the 7th August and HOPE was in the air that this was the beginning of this Little Fighter’s healing. The following day Ryan was nauseous and developed a fever of 40° and he was rushed back to Dora Ningiza.
Blood infection as a result of the feeding tube – back to hospital for 5 days! Antibiotics again plus something to bring the fever down and then the wait…
Back home by the 12th August and maintenance in the form of regular rinses with saline water and eating ice-blocks thrice daily to prevent mouth sores as a result of the Radiation… Radiation Therapy continues with a short chemotherapy session once a week as well… a lot for a little boy to handle!
Mouth sores and another 4-hour blood transfusion – pain – fatigue – eye infection – the list goes on…
Celebrations on the 17th September when Ryan has his last Radiation treatment! This time he manages to keep his favourite Steers milkshake down – YAY!
Back to theatre to remove the feeding tube on the 18th September and the doctor says that they are delaying further chemotherapy due to the chance of infection at this stage. Chemotherapy begins again on 29th…
October 2014 New Treatment Plan
Doctors say that Ryan will need Chemotherapy for about a year and must go for blood tests once a week – he is also not allowed to attend school.
Hospital, Chemo, and needles are all that one has to look forward to these days. One day we stay behind after chemo to attend an information session on Hygiene and Care and once again we realise that nothing in life is guaranteed. Many of the other families do not have access to clean water, clean warm clothing and nutritious food – those things which we take for granted every day…
On the 28th October Ryan had a great birthday – he was able to invite a few of his classmates and his Grade 5 teacher also attended – it was such a great day for Ryan.
After 2 weeks of rest it was time to dress up warmly and brave the icy cold weather outside and set off to the hospital for the next 2 days of chemo. Next follows a visit to an ENT specialist and after throwing up in the car you are not impressed and definitely not ready for the long bendable scope that the doctor sticks up your nose to see if there is any cancer there. He confirms that there is no cancer left in your throat or nasal passages, just a bit of bruising and inflammation.
More blood transfusions; platelets low again so isolation to avoid infection; herpes and mouth sores painful as hell and doctors say an 8kg weight-loss is enough; no more. Back to rinsing and chewing ice and most meals come in a liquid form – constipation just makes things worse.
More scans, more chemo, more radiation and although you are still weak and nauseous, we are very happy that the cancer in your lungs, nose and throat is all clear now. Another port put in at the beginning of December so that the next round of chemo can begin and Dad goes back to work at last, not wanting to but needing to… very emotional goodbye.
Glad tidings as the school year draws to a close – Grade 6 next year; hopefully you will have got stronger by then. Friends can come visit and so do family from overseas and all is good for now. Port not working again so chemo via the drip in your hand again… platelet counts low again…. isolation again… and so the vicious circle continues…
At least you will have a break from chemo and needles for the next few weeks so hopefully we can enjoy Christmas and New Year…
Posted on 8 September, 2016, in Blog, Onco Parents and tagged Child Cancer Awareness, Childhood Cancer Awareness, Children with Cancer, Little Fighters, Little Fighters Cancer Trust, paediatric cancer, Pediatric cancer, pediatric cancer awareness, Rhabdomyosarcoma, Ryan, south africa. Bookmark the permalink. Leave a comment.