Sunday, 23 April 2017

Febrile Neutropenia

Medicine, vial, chemo, bottles

Ryan completed chemotherapy cycle 4 of 6 in March. We were discharged and managed a week at home before he was unfortunately admitted to Carmarthen hospital with febrile neutropenia. This is a whole body reaction to an infection when there is a low immunity due to chemotherapy. His temperature reached 40.1C and his lymphocyte white blood cell count was 0.2. When the count falls below 1, this is called neutropenia and infections become a high risk.

Neutropenia is very common in cancer patients and we have done well to avoid an episode up to this stage. The standard oncology protocol is to spend a minimum of 48 hours on IV antibiotics and 7-10 days on growth hormone injections to support the recovery of the white blood cell count. It didn’t go quite as smoothly as this however for Ryan, but that is whole other story that will be told later.

White Blood Cells

Chemotherapy is likely to cause a low white cell count - particularly neutropenia.  If you or a patient you care for presents with any form of infection while undergoing chemotherapy treatment it is urgent they receive a same day full blood count and that you know to look out for the following:

  • If neutrophils <1.0 and the patient is febrile (>38C on one occasion or >37.5C on two occasions taken half an hour apart), admission to hospital is required for IV antibiotics.

  • If neutrophils >1.0 and the patient is febrile but well, consider oral antibiotics after checking with GP/Local Hospital/Oncology team.

  • If neutrophils are >1.0 and the patient is febrile and clinically unwell please liaise with your emergency contact team.

If you are ever unsure. Get checked. It is the age old ‘better to be safe, than sorry’ scenario. Chemotherapy is well known to lower your resistance to infections. When you have lower than normal white blood cells your body is less able to fight infections.  When you are neutropenic it is strongly recommend to not spend long periods of time in crowded places, such as cinemas, shopping centres, swimming pools etc. It is also sensible to avoid close contact with any family or friends who have obvious coughs, colds, flu etc.

You should take it very seriously if you do develop an infection whilst on chemotherapy and for up to four weeks after treatment. Signs of an infection are:

  • A temperature above 38C on one occasion or above 37.5C on two occasions during a half hour period.
  • A sore throat.
  • A chesty cough.
  • An upset stomach.
  • Needing to pee more often or pain when going.
  • Feeling generally unwell.
  • Redness, discharge or shivery episodes after use of hickman or other central line.

Don’t delay seeking advice and treatment. Infections are a SERIOUS risk and can become life threatening very quickly if ignored.


Fortunately Ryan recovered well from this latest blip and we put it down as just another bump on our badly paved trip, down Lymphoma Road.

Thursday, 6 April 2017

Cycle 4

Epstein-Barr Virus Lymphoma

Ryan's lymphoma is being driven by the Epstein-Barr Virus 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 cycle 4 was that his EBV plasma readings had come back as zero for the 2nd month, which tells us that no more cancerous cell are being made in his bone marrow. There are still EBV cells in his blood so hopefully this cycle and next 2 cycles will finish killing off the cancer cells that are still in his blood. Ry will be given remission status when the EBV plasma has been zero for 6 months and still faces at least two years of maintenance ahead after the six chemo cycles have finished.

The week of SMILE chemotherapy went well although he had some impressive fluid retention on day 4. This can be a sign that that kidneys are not working as well as they should be, so he has had some extra tests to make sure everything is working as it should be.

We had only been home for 2 days when Ryan went routinely to the toilet and I heard him swear from downstairs. I ran up to him and he asked me if it was ok that his pee was dark green. Please don't judge me when my first response was to giggle before I then reached for my phone to text his oncology nurse. It is another sign of kidneys being a bit tired and we were advised to ensure he drinks plenty to wake them up a bit.

Things took a bit of a turn though a week after getting home, when Ry developed an infection which unfortunately hospitalised him as he didn't have enough immunity to fight it without a bit of help. What we expected to be the usual standard 48 hours of IV antibiotics turned into an ambulance transfer to Teenage Cancer Trust unit at Cardiff hospital for a 10 day course of IV antibiotics and a unfunny time with non diabetic hypoglycemia that no one was initially able to work out why.

Adrenal Insufficiency Medical ID card

After numerous test and several days on a glucose drip Ryan was diagnosed with steroid induced Adrenal Insufficiency, I was given training on how to treat the new addition to Ryan's health list and we were finally allowed to go home after a 13 day stay, for a weekend break before chemotherapy Cycle 5 and the onslaught begins all over again.

I will cover more detail about the adrenal problems in a separate post.

Monday, 3 April 2017

APRIL is Autism Awareness Month

April Autism Awareness Month

The  whole of April is given over to Autism Awareness Month with hundreds of activities and events taking place to raise awareness and much needed funds for charity.

It begins with World Autism Awareness Week taking place every year from 27th March and cumulates with World Autism Day celebrated on 2nd April each year. The week aims to raise awareness, with educational events, exhibitions, social media posts and discussions, bringing people from all walks of life together.

World Autism Awareness Day

Autism is a lifelong developmental condition that affects how a person communicates with and relates to other people.  It is also a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways.  Asperger syndrome is a form of autism. Many people with autism are of average or above average intelligence. Some people with autism experience over (hyper) or under (hypo) sensitivity to sounds, touch, taste, smells, light or colours.  People with autism often become extremely anxious in unexpected and unfamiliar situations. You can read more about what autism spectrum condition (ASC) is here.

Autism Spectrum Condition

The so called campaign group ‘Autism Speaks’ uses the tagline ‘Light it up blue’ for Autism. However the organisation has come under increasing fire and scrutiny recently regarding their approach to wanting to cure autism as a disease. This stance has angered many families and individuals calling for boycotts of their campaigning. I personally do not agree with this mind set or manifesto, but regardless of your opinion of this particular group, they have certain got the world talking about this emotive topic.

There are many ways in which you can get involved and raise awareness whether you choose to ‘Wear Red Instead’ for the group Actually Autistic or you could choose to be ‘Positively Purple’ in support of the National Autistic Society (NAS).  I am a member of the NAS and am extremely grateful for the support and guidance I have received from them since Ryan’s diagnosis in 2008. I personally choose however to not wear any particular colour, but instead talk, talk and talk some more to anyone and everyone who will lend me half an ear.

Support Autism Awareness

As far as I am concerned you can wear any colour you like, so long as you open up conversations, increase exposure and move towards global acceptance. Take part in, organise or sponsor; walks, bakes, fancy dress, auctions, raffles, quizzes, fun runs. The list is endless and you are only limited by your imagination in whatever you fancy to spread the word for this unique way of life. The more unique and different the better. Celebrate the differbility as opposed to a disability.

It matters not how you get involved, just get involved. Comment below to let me know how you advocate for autism awareness, or join the chat on social media with the hashtags #autismawareness and #waaw

Parenting an Autistic Child

Sunday, 2 April 2017

Myths and Misconceptions

Education is the most powerful weapon which you can use to change the world. ~ Nelson Mandela.

Autism Myths

The aim of our blog is to educate and help just 1 person to support their child better. We hope to change perceptions of Autism and living with an invisible challenge; but with so many myths and misconceptions out there it really is a 1 step forward, 2 steps back process, although that is half the fun of constantly challenging ourselves to find new ways of getting our message across.

Contrary to popular belief many autistic children do make eye contact; it just may be less or different from a non-autistic child. Many children with autism can develop good functional language and others can develop some type of communication skills such as sign language or use of pictures.  Children do not ‘outgrow’ autism but symptoms may lessen as the child develops strategies to cope.

One of the most devastating myths about autistic children is that they cannot show affection. While sensory stimulation is processed differently in some children with Autism they can and do give affection, but it may require patience on a parent’s part to accept and give love on the child’s terms. 

The above extract is taken from an Autism Spectrum Disorders Fact Sheet distributed by the Centre for Developmental Disability Health, and this is very much the case with Ryan.  It is only in the last 2 years that he has started to give me hugs, but even now they have to be on his terms and initiated by him. 

He is fifteen now and I still live for the day I get a kiss. 

He has a number of sensory issues but with the exceptional support he has received in secondary school and from my unending drive to support and offer him extensive therapy he has made astounding progress in his ability to cope and deal with being autistic to the point where his symptoms have lessened so much some people who meet him for the first time are actually surprised to discover his diagnosis. Don't get me wrong every now and then he has to throw us a curve ball just to keep us on our toes and remind us just how much effort he has to put in to appearing to function 'typically'.

Autism, Myths and Misconceptions

So what have we done to get to this point other than work on crushing each myth as we encounter it?
  • Wore wellies permanently for a time (yes even in summer) while we worked on getting him to wear shoes. Wellies are ‘roomy’ where as shoes were too constricting for him. He still to this day does not like trainers, he finds them far too tight.
  • Wore bright orange industrial strength ear defenders for a time or at least took them everywhere with us so he had the option of putting them on if he became unable to cope (if they went on that was a visual clue to change the environment or risk a meltdown). 
  • Took sunglasses out with us and also to school. They were very accommodating because he doesn’t cope well with the fluorescent strip lights in school.
  • Kinaesthetic toys like stress balls and stabilo writing pens.
  • Good choice / Bad choice cards and major use of social stories by Carol Gray.
  • Egg timers that show visual count-down to needing to do something with buzz at required time. Worked really well for Ryan.
  • Autism alert card that he carries with him to show people.
  • Invested in a locator devise as he had a major tendency for bolting. Not cheap, but who puts a value on child safety. Well worth the money, we certainly got our monies worth on several occasions.
  • School have included him in social skills classes and Circle of Friends support groups.
  • Intensive Speech and Language Therapy. I particularly like Black Sheep Press resources such as Speech Bubbles program.  
  • SPELL framework: Structure; Positive (approaches); Empathy; Low arousal; Links (between all components and aspects of your child’s life).
  • Make use of & encourage participation in clubs and groups both in school and out: 5x60, lunch time teacher led, cubs/scouts etc.
  • Engage in and encourage child’s interests. Ryan loves 3 things in his life other than animals. Lego, PC gaming and Photography.
Fox Gloves, Autism, Photography

On day while on our journey home from school Ryan said the following to me in the car, once more crushing a few misconceptions: 

I think I am learning about emotions mum. We were playing truth or dare at lunch time and I could see one of the boys getting upset. He looked like he was going to cry so I told the others to stop the game and we went to do something else instead.

I told him how proud I was and explained how he is learning social clues and non-verbal communication skills. He added:

Yes I now know what a happy face, angry face, sad face and funny face looks like now. I think I am finally understanding them.

See some of Ryan’s Lego creations here.

Monday, 13 March 2017


Nutrition and Hydration Week

To coincide with national Nutrition and Hydration week, I thought it would 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 malnutrition characterised by loss of lean body mass, muscle wasting, and impaired immune, physical and mental function.

Cancer cachexia is also associated with poor response to therapy, increased susceptibility to treatment-related adverse events, as well as poor outcome and quality of life. Cancer cachexia is a complex, multifactorial syndrome, which is thought to result from the actions of both host and tumour derived factors, including cytokines involved in a systemic inflammatory response to the tumour.

Early intervention with nutritional supplementation has been shown to halt malnutrition, and may improve outcome in some patients. However, increasing nutritional intake is insufficient to prevent the development of cachexia, reflecting the complex pathogenesis of this condition. Nutritional supplements containing anti-inflammatory agents, for example the polyunsaturated fatty acid (PUFA) eicosapentanoic acid (EPA), have been shown to be more beneficial to patients than nutritional supplementation alone. EPA has been shown to interfere with multiple mechanisms implicated in the pathogenesis of cancer cachexia, and in clinical studies, has been associated with reversal of cachexia and improved survival.

When Ryan became ill in February 2016 he weighed 53kg. I chased the GP for the ENT referral in May 2016 by this point Ry's weight had dropped to 49kg. We didn't see ENT until July when they discovered the tumour by which point Ryan’s weight was now 46kg and by formal diagnosis at end of Aug he had reached his lowest weight of 42kg. So in total had lost over 10kg from Feb to diagnosis in Aug.

The haematology consultant was quite concerned that Ryan's malnutrition by the time of diagnosis was going to make the fight even harder for us. Ry was not well enough, strong enough, or nutritionally able to begin Chemotherapy so the decision was made to fit him with a Nasal Gastric NG feeding tube, Ryan then went on to have a PEG, but this almost killed him with sepsis and peritonitis, undoing the small amount of success we had managed with the NG.

The surgeon that performed the emergency laparotomy was brutally honest with me in those early hours, he had never operated on a child with such low muscle mass due to malnutrition and he was very doubtful that the sutures from the operation would hold. The next 48 hours where critical. Either Ryan would make it or he wouldn't. He was doubtful.

Ryan defied the odds, made a full recovery and finally had a Mic-Key gastrostomy operation which has at last been a success and Ryan was weighed last week confirming he has gained weight to 50.4kg. Still a long way to go to get to ultimate goal of 60kg, but finally heading in the right direction.

Nutrition is critical for any growing child and for any adult to remain healthy. For Ryan it was a double edged sword. He was physically unable to eat due to the growing tumour in his throat, that we knew nothing about and the growing cancer was consuming inordinate amounts of calories and feeding off the little nutrients he had to grow. It really is a Catch 22.

Although Ryan is now able to eat a full normal diet again now, he is still being gastrostomy fed as well to ensure he has all the necessary nutrients he needs to fight the cancer.

Tuesday, 7 March 2017

Cycle 3

Chemo round 3 should have started at beginning of February but had to be delayed as Ry's kidneys are struggling a little bit due to him being too dehydrated. The medics sorted that problem and re-hydrated him, but the following day when they took bloods his neutrophils had dropped to 0.6. They have to be above 1 to be able to have chemo. So we were delayed a 2nd day. On day three his bloods had dropped further to 0.5 so we were discharged and advised to go home and wait for them to improve.

Before we went home though, the doctor and dietitian came to chat about his nausea and lack of  gastrostomy feeding. They have a few ideas, but they want to make only one change at a time so they know what works or what doesn't. A different anti-sickness, a different type of feed, they also want to start a diuretic and a laxative as his gut isn't working as well as it should.

We had a relaxing weekend at home and the community nurse came out the following Monday morning to check Ry's bloods again. They had raised to 1.1 so we headed straight back to Cardiff to commence cycle 3 exactly one week later than planned. That is one of the first things you learn with the old Cancer game. NOTHING goes to plan or the way you expect it to.

Finally cycle 3 commenced and he has done well again, with only a very small Ifosfamide reaction this time that only lasted for a few seconds. Then at discharge his neuts were 3.2, and we haven't even started the GCSF yet, so explain that one too me please; however his Hb had dropped to 86 and he was feeling a bit rough with sickness and chest pains. The doctors are not sure if that is due to low Hb or if he is coming down with a bug. If it was a bug it never took hold and he improved as the Hb went up.

We are over half way through treatment now with 3 more cycles to go. Cycle 4 starts Tuesday 7 March 2017.

Tuesday, 28 February 2017

One Week in Cancer 2017

One Wednesday morning in January I spotted a message on Facebook from the lovely youth worker Anna at TCT on behalf of JTV Cancer Support.
To coincide with World Cancer Day (Saturday 4th February) JTV Cancer Support would love to have some TCT friends 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 the disease, pressing governments and individuals across the world to take action. Their tagline is #ActOfUnity and people were encouraged to buy Unity Bands as a show of support and to raise vital funds for cancer charities.

Act of Unity
Cancer Research

Act of Unity
Stand Up 2 Cancer

They wanted the patients to film bits every day for a week (starting Monday 30th January) to show everyone what one week living with cancer is like for them.
...maybe they're back in education/work or have a week full of hospital appointments, JTV wanted us to share a snapshot of life with/after cancer.
I thought hey, Ry might be up for this. Another way to raise awareness. I might be fun. So I messaged JTV to get their advice and to see if we were eligible.
Filming was easy! It was all done using my smartphone. I then uploadjed the footage to JTV via their website and JTV edited it altogether. Links to videos below.
I won’t lie I felt really weird filming and I hate the sound of my own voice, but hey it was all for a good cause. As it turned out, Ryan wasn’t as engaging as I would have hoped, but he had fair reason also. Ry didn't want to take part he said to me afterwards because he doesn't want it to be used against him in future. He said the video is forever available on the internet and he has heard bad stories about people being filmed. Also though and possibly more importantly he doesn't want to be remembered for cancer. He said it is such a small part of his life and he is so much more.

Friday, 24 February 2017

Fish Tank Therapy

While 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 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 birthday is in November, so the timing of his suggestion made perfect sense and solved the annual ‘what to get’ dilema.

Once his radio therapy finished the week after his 15th birthday we took Ryan shopping to purchase a new tank to set up and cycle before adding any fish as we chose to go for a basic tropical fish set up with the plan to house some tetra and corydora catfish.

Neon tetra

Ryan’s tank is now three months old and we are doing really well. The fish seem happy enough and more importantly, we haven’t lost any yet, so we must be doing something right. Ry feeds them every day, but I do all the cleaning and maintenance so as not to put him at any risk while he is neutropenic.

SpongeBob theme
We are hoping to add a few more small fish soon, but not sure what to go for. More tetra? Guppies? Ideas welcomed. Comment below with your suggestions.

Wednesday, 22 February 2017

Cycle 2

After cycle 1 had finished we treated ourselves to a very quiet Christmas at home. It was lovely to have 3 whole weeks without a hospital stay. I barely knew what to do with myself. Pre cycle 2 hydration was planned for Tuesday 3rd Jan, where Ryan and I met with Dr C for a progress update, which was very positive and encouraging. Cycle 2 then began as planned on Wednesday 4th January 2017 with the same SMILE protocol as detailed on our separate page. 

Day 1 went like this: Ryan started Methotrexate at 9:30am. He then fell asleep at 11am and slept till 7pm. Resulting in a very boring day for me. I helped the youth worker to take down all the Christmas decorations from the ward. I went for a walk around the pond on the hospital grounds. I met with the Gastro nurse and then the dietitian but neither of those meetings took very long. Overall a thumb twiddling day, but hey no sickness. To be fair I could perhaps have done more sorting his feeds out, but it was rather nice to have a week off my 'nursing' duties and instead I get to just be mum. 

This second round however didn't go quite as smoothly as the first. Ryan had a mild, grade 1 reaction to the Ifosfamide drug on the Thursday (day 2) which was picked up amazingly quickly by the wonderful nurse looking after him and promptly treated with Methylene Blue. This will now have to be give as a prophylaxis on all future cycles. 

His bloods dropped to low levels, much more quickly, but started GCSF injections as before, and fortunately did not become febrile neutropenic, as we had feared. He did however suffer much more with the sickness and struggled with his PEG feeding. Although on day 16 he did eat 2 dairylea dunker tubes. For those that know Ryan hasn't eaten any solid food since October 2016, with was a huge milestone in his treatment progress.

How Methylene Blue gets its name...

Tuesday, 21 February 2017

Cashing in on Cancer

Those of you that follow our blog regularly may remember a similar titled post that I wrote way back in September 2014 where I talked about Cashing in on Autism. Hey I know, I can't usually remember what I did yesterday, but I do remember all of our posts.

In this post I discussed not wanting to put ads 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 temporarily stop work in order to care for Ry as he needs 24hr a day monitoring and meds. Cancer is expensive, so expensive. My pay has already dropped by half, yet our heating, electricity, food bills and travelling expenses have all increased. 

According to the cancer charity CLIC Sargent cancer costs on average £600 extra a month. I would agree with this figure yet my wages have halved. This is why I have made the decision to allow adverts onto my blog. 

As was commented on my previous post on this subject. Just because something is advertised on your Blog does not mean that money jumps out of MY pocket. 

I thought this to be very sound advice and hope that you can accept the addition to our journey.