tag:blogger.com,1999:blog-63376565644226335542024-03-27T23:54:21.506+00:00There's a Panda in my BellybuttonASC and Teenage Cancer.
Join our winding and bumpy trip down Lymphoma Road, stopping at Autism Central.@SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.comBlogger72125tag:blogger.com,1999:blog-6337656564422633554.post-26502531860380364372023-07-30T09:26:00.007+01:002023-07-30T09:31:26.279+01:00Swansea Community FarmSwansea Community FarmIn April 2021 Ryan began volunteering at Swansea Community Farm (Welsh - Fferm Gymunedol Abertawe). For now, he attends one day a week on a Tuesday from 10 am to 4 pm but there is a possibility that he could also volunteer on Thursdays as well also 10 am to 4 pm. About the FarmSwansea Community Farm is the only city farm in Wales set in 3.5 acres of land with a variety of @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com0tag:blogger.com,1999:blog-6337656564422633554.post-61198578815024479142023-07-30T08:59:00.017+01:002023-12-26T12:07:03.508+00:003 Years in Remission 3 Years in RemissionIn May 2017 Ryan finished his 6 gruelling cycles of Chemotherapy and was in remission for 3 months before his cancer returned in September 2017. I wrote about our first 3 month cancer free milestone in our blog post here. In August 2020 Ryan once again finished treatment. This time he completed 3 years of Immunotherapy treatment and in November 2020 Ryan had tests done @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com0tag:blogger.com,1999:blog-6337656564422633554.post-28009508258094635362023-07-30T08:47:00.001+01:002023-08-24T14:47:13.871+01:00Worrying About the Future Worrying About the Future.Ryan said to me recently. "Childhood gave me Autism. My teens gave me cancer. What will adulthood bring?" Big worries for someone so young.
So much pressure and conditioning are placed upon us about the importance of education and the set path that the majority of us will take through the system to university and/or the job market.
What happens if you do not @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com0tag:blogger.com,1999:blog-6337656564422633554.post-9949881569516711842023-07-30T08:42:00.002+01:002023-07-30T08:42:10.216+01:00Coronavirus COVID-19Coronavirus In December 2019, the city of Wuhan in the Hubei province of central China recorded the first known cases of a novel coronavirus in humans. By the start of 2020 cases where being recorded in Italy and it was quickly spreading across other European countries. The UK recorded its first case on 31 January 2020 and by 11 March 2020, the World Health Organisation declared the outbreak@SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com0Wales, UK52.1306607 -3.783711723.820426863821154 -38.9399617 80.440894536178845 31.3725383tag:blogger.com,1999:blog-6337656564422633554.post-84284512718571771352023-07-30T08:34:00.004+01:002023-07-30T08:34:34.209+01:00Cancer Treatment Review
18 Month Post Relapse Treatment ReviewIn November 2016 Ryan was given 2 days to live when the feeding tube he had ruptured his stomach and caused Peritonitis.In September 2017 Ryan was given a 3 months prognosis when his lymphoma relapsed. The doctors said his kidneys were not strong enough to cope with chemotherapy a second time. Then we were given the opportunity to try a new immunotherapy @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com2tag:blogger.com,1999:blog-6337656564422633554.post-66771010203178171502023-07-30T08:27:00.004+01:002023-07-30T08:27:36.780+01:00Immunotherapy Treatment - Pembrolizumab
Experimental Treatment
Pembrolizumab is one of a number of immunotherapy treatments that are revolutionising the fight against cancer around the world. The future of medicine may eventually see these treatments used as the first line of defence against Cancer, which does not affect neutrophil counts or cause hair loss which are two of the biggest disadvantages of chemotherapy @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com2tag:blogger.com,1999:blog-6337656564422633554.post-40578652340936561342023-07-30T08:18:00.004+01:002023-07-30T08:19:12.302+01:00World Cancer Day
World Cancer Day
To coincide with World Cancer Day JTV Cancer Support invited Ryan and I to take part in a very special filming project!World Cancer Day is a truly global event that takes place every year on 4 February. World Cancer Day unites the world’s population in the fight against cancer.
It aims to save millions of preventable deaths each year by raising awareness and education about @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com4tag:blogger.com,1999:blog-6337656564422633554.post-84803805191795925552023-07-30T07:59:00.006+01:002023-07-30T07:59:53.558+01:00Communication Passport
A communication passport is a way of supporting a vulnerable person, such as someone with Autism, with communication difficulties when they have to transition through different events, such as changing schools, or their first job. In Ryan’s case, we made a new specific communication passport for his medical file so that all the medical professionals could learn a little about Ryan before @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com4tag:blogger.com,1999:blog-6337656564422633554.post-53606934937152873842023-07-30T07:51:00.002+01:002023-07-30T07:51:09.597+01:00I Am Ryan
I Am...RyanI previously published a similar post called I Am... Autism which was a mini-interview with Ryan that gave an insight into his autistic mind. This post is a different interview and a little more light-hearted as our recent posts about his cancer journey have been anything but. So here goes. Grab a quick break and enjoy...
WITHOUT any prompting, ask your child these questions & @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com2tag:blogger.com,1999:blog-6337656564422633554.post-11427434595832857282023-07-30T07:42:00.001+01:002023-07-30T07:42:04.299+01:00Questions to ask after Cancer diagnosis
Cancer Sucks
I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer.Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com5tag:blogger.com,1999:blog-6337656564422633554.post-68156972487024717272023-07-30T07:27:00.002+01:002023-07-30T07:27:54.490+01:00Ryan’s Relapse - Biopsy #2
Oral Mass
Ryan woke up on Monday 11 September 2017 and told me he had a mouth ulcer. As soon as he showed me I knew it was not an ulcer, I knew his lymphoma is back. We had an appointment with his oncologist at the clinic the following day. The consultant, Dr A, agreed it needed a biopsy. He photographed the mass and emailed our oncology team in Cardiff from the treatment room at Carmarthen @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com2tag:blogger.com,1999:blog-6337656564422633554.post-59030322587195581982023-07-30T07:21:00.007+01:002023-07-30T07:23:35.882+01:00Missing Education due to Illness
The Importance of Attendance
If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com11tag:blogger.com,1999:blog-6337656564422633554.post-37827884124811855072023-07-30T07:17:00.002+01:002023-07-30T07:17:39.447+01:00Three Months Cancer Free
Cancer Free
On 5th August 2017 we hit a new milestone. Three months post-chemo and cancer-free. I can't believe the progress Ryan has made, it has astounded even me. The doctors are impressed and I'm impressed. His hair is growing back beautifully. It just looks like a really short crew cut now. He has put on a wonderful amount of weight that puts him now absolutely on the typical average @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com2tag:blogger.com,1999:blog-6337656564422633554.post-90134015103688694252023-07-30T07:14:00.002+01:002023-07-30T07:14:36.944+01:00Cancer Survivor Story
Cancer Doesn’t End When Chemo DoesRyan finished his chemotherapy treatment on his brother's 18th birthday in May 2017. The last two years and eight months were a blur of stress. Yet coming to the end of treatment coincided perfectly with Cancer Survivors Day on the first Sunday in June, each year, so what better way to mark this day than with our own survivor story. Ryan's weight at diagnosis@SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com8tag:blogger.com,1999:blog-6337656564422633554.post-3410512742102989652023-07-28T16:57:00.002+01:002023-07-30T09:32:58.042+01:00Adrenal InsufficiencyLymphoma Treatment - Side EffectsAs a result of the steroid chemotherapy that Ryan has been on for his Lymphoma treatment, he has developed Adrenal Insufficiency. This is hopefully a temporary condition that will improve once chemotherapy treatment has finished, however, only time will tell.There are two types of Adrenal Insufficiency. Primary and Secondary. Ryan’s type is secondary and can be @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com5tag:blogger.com,1999:blog-6337656564422633554.post-53852216747866653602023-07-28T16:50:00.003+01:002023-07-28T16:50:45.893+01:00Chemotherapy Cycle 5What is Normal?With this being our penultimate cycle of chemotherapy I have had several family and friends comment to me “oh I bet you can't wait to get back to normal”. This has really thrown and upset me because it seems to come across that they have failed to comprehend the fact that we have 2-3 years of maintenance ahead and at least two more general anaesthetic surgeries. Not to mention @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com6tag:blogger.com,1999:blog-6337656564422633554.post-69181027293173427322023-07-27T13:13:00.006+01:002023-07-27T13:13:44.021+01:00Febrile NeutropeniaWhole Body Reaction to InfectionRyan completed chemotherapy cycle 4 in March 2017. We were discharged from the Teenage Cancer Trust ward at Cardiff hospital and managed a week at home before Ryan was unfortunately admitted to Carmarthen hospital with febrile neutropenia. Febrile neutropenia is a whole-body reaction to infection when there is a low immunity due to chemotherapy. Ryan's temperature @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com2tag:blogger.com,1999:blog-6337656564422633554.post-78227211080617445182023-07-27T13:08:00.002+01:002023-07-27T13:08:38.336+01:00Chemotherapy Cycle 4Adrenal InsufficiencyRyan's lymphoma is being driven by the Epstein-Barr Virus (EBV) which causes glandular fever. The EBV invaded his T-cells whilst he had Glandular Fever and turned them cancerous causing dysplastic lymph cells to grow in his throat resulting in a soft tissue tumour forming.The good news at the start of chemotherapy cycle 4 was that his EBV plasma readings had come back as@SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com0tag:blogger.com,1999:blog-6337656564422633554.post-17051867839315195062023-07-26T09:38:00.007+01:002024-03-11T08:41:19.785+00:00Malnutrition in CancerNutrition and HydrationTo coincide with National Nutrition and Hydration week, I thought it would be good to share with you Ryan’s experience of malnutrition as a result of his lymphoma diagnosis.
Malnutrition is a common problem among patients with cancer, affecting up to 85% of patients with certain cancers. In severe cases, malnutrition can progress to cachexia, a specific form of @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com2tag:blogger.com,1999:blog-6337656564422633554.post-31237905788002767402023-07-21T09:20:00.002+01:002023-07-21T09:20:30.925+01:00Chemotherapy Cycle 3
Cycle 3Chemo round 3 should have started at the beginning of February 2017 but it had to be delayed as Ryan's kidneys were struggling a little bit due to him being too dehydrated. The doctors sorted that problem and re-hydrated him, but the following day when they took blood to check his levels, his neutrophils had dropped to 0.6. They have to be above 1 to be able to have chemotherapy. So @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com2tag:blogger.com,1999:blog-6337656564422633554.post-54901341120017374252023-07-21T09:16:00.005+01:002023-07-21T09:17:15.134+01:00Fish Tank TherapyWhile Ryan was going through his radiotherapy treatment he asked about having some fish again. When I say again we used to have a fish tank back in 2010, but when House met Van the fish, unfortunately, did not survive the ordeal. Ry sold the idea to me as a therapy to help him relax while recovering at home and the tank light would act as a night light for him also.
Corydora catfish
His @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com4tag:blogger.com,1999:blog-6337656564422633554.post-81210336571428082122023-07-21T08:36:00.003+01:002023-07-21T08:36:40.958+01:00Chemotherapy Cycle 2After chemo cycle 1 had finished we treated ourselves to a very quiet Christmas at home. It was lovely to have three whole weeks without a hospital stay. I barely knew what to do with myself. Pre-cycle 2 hydration was planned for Tuesday 3 January 2017, where Ryan and I met with his paediatric consultant Dr C for a progress update. Which was very positive and encouraging. Chemotherapy cycle 2 @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com2tag:blogger.com,1999:blog-6337656564422633554.post-38969108320016564582023-07-18T20:07:00.001+01:002024-03-27T08:09:46.190+00:00Cashing in on CancerThose of you that follow our blog regularly may remember a similarly titled post that I wrote where I talked about Cashing in on Autism. In that post, I discussed not wanting to put adverts into my blog as I didn't want to make money from Ryan's autism. Cancer, however, is a whole other story. Times have changed. I have had to take voluntary redundancy and stop work in order to care for Ryan@SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com2tag:blogger.com,1999:blog-6337656564422633554.post-25186054406959321962023-07-16T10:11:00.000+01:002023-07-16T10:11:43.631+01:00SMILE Chemotherapy TreatmentWhat a ridiculous name! I have made several requests that the name of the protocol is changed, but it was created in Japan, so I have little influence. There are 5 drugs that make up the protocol which give the acronym SMILE. The drugs that Ryan is subjected to are as follows:Steroid Dexamethasone, days 2-4: A steroid used as an anti-inflammatory, increase appetite, prevents reactions. @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com0tag:blogger.com,1999:blog-6337656564422633554.post-85126762643729069162023-07-16T08:25:00.003+01:002023-07-16T08:25:49.054+01:00Chemotherapy Cycle 1SMILE ChemotherapyWe were originally given a tentative date of Monday 21 November to begin his first of six SMILE chemotherapy cycles, but the delay to Radiotherapy due to the peritonitis episode pushed that date back once again. One thing you have to accept with cancer is nothing going to plan, or to date. Not easy if you are a control freak like me.Each Chemo cycle will last 28 days. Day 1-4 @SarahLouhttp://www.blogger.com/profile/17590439041784893512noreply@blogger.com4