Saturday, 22 October 2016

Year 9 Options

You may have noticed I didn't post for more than a year between "Glandular Fever' and 'Lymphoma Road'. The reason for our absence is that in fact Ryan has been ill since September 2014 with recurring sore throats and temperatures, indicative of tonsillitis. He was diagnosed with Epstein Barr Virus which causes Glandular Fever in March 2015 and missed 6 weeks of school.
His health did not improve over the next 12 months and from February 2016 he deteriorated significantly. He lost 10kgs in weight and developed: Appetite loss, Severe Fatigue, Painful joints, Sore throats, Intermittent fevers (which last 4 days on average), Night sweats, Dizzy spells, Mouth ulcers, Pallor, Dysphagia. His CRP reading was 31 in May 2016. 
This sucked both health and timing wise as it was right at the critical point of him choosing his year 9 options in school for the subjects he was going to begin studying for his GCSEs. Although Ryan was absent from school, we were still able to complete the options paperwork and Ryan picked ICT, computer science and RMT.  
Our GP decided that the high CRP level warranted further investigation as Ryan had by that point been ill for 20 months, so we were referred to a Paediatric Consultant (PC). We had our first appointment with PC on 13th June 2016. PC felt Ryan's problems were down to poor diet and poor oral hygiene, but "for completness" agreed to run some tests. Ryan had a chest xray and every single possible blood test performed that afternoon. I recieved a letter on 30th June from PC explaining cervical glands were present and that he will discuss the results in detail at the our next appointment a month later. 

Friday, 21 October 2016

Lymphoma Road

26 August 2016, we received the gut-wrenching news that haematology consultants at University Hospital of Wales, Cardiff believed Ryan had a very rare form of Lymphoma, known only to Asian and Latin American populations of men over the age of 50. 

There were still further tests needed as a few experts were baffled to see this cancer in a 14 year old Western European Caucasian boy. We were given the confirmation diagnosis of EBV positive NK/T-cell non-Hodgkin Lymphoma on 2 September 2016. Steroid Chemo started while planning began ready for 5 weeks of intense Radiotherapy before commencing SMILE chemotherapy protocol.

Ryan's medical team consists of haematologists, pathologists, histologists and immunologists who all agree that Ryan's episode of  Glandular Fever in 2015 set off a chain reaction of the Epstein-Barr virus invading his T-cells ultimately causing the cancer.

Over the next few posts I will tell you the story of how we came to this fretful day and diagnosis. I hope you stay with us, share our story and hopefully help others on their own cancer journeys.

Friday, 28 August 2015

Glandular Fever

I haven't posted for almost 3 months and that is shameful, for which I am sorry. The reasons for my marked absence are due to work and my university degree taking up the majority of my time. In fact I should be writing an essay right now, but am procrastinating instead. I have also been caring for two very poorly family members one of which has been Ryan.

I mentioned way back in April that Ryan was first diagnosed with Glandular Fever in February of this year. He missed a large chunk of the Spring term as a result but went back to school after Easter. Unfortunately the illness hadn't completely cleared and hit with a vengeance once again during June resulting in Ryan only attending school for a total of 5 days during the rest of the school year, summer term. This is why I haven't posted anything further. He has been incredibly poorly, he certainly never does things by half. I don't know if his appallingly weak immune system has any link to the fact that he is Autistic. Maybe that could be a discussion topic, as I would be very interested in hearing other people's experiences and views on the matter.  I wrote about Ryan's many illnesses in June 2014 which can be re-capped here.

Considering the amount of time Ryan has missed from school this academic year he managed to achieve an excellent set of exam results and report. I think he just about managed to hold himself together to get through his exams as it was the following week that he then became ill again. Coincidence? He achieved 2 As, 5 Bs, and 4 Cs. This is outstanding for a boy that missed nearly three years of primary education, was expelled and then needed to attend part time as a result of moving to a new school. What a difference to last year's attempt in year 7.

I know that the effort has come from Ryan maturing and settling in well at secondary school, but I also know that he has received phenomenal support from the school, especially his TA and HLTA (Teaching assistant and Higher level teaching assistant). They have both been rocks of support to Ryan and myself. 

To add to the busyness also of the last few months we decided as a family (I got my own way) to introduce yet another family member to the growing Skilton clan, of the most gorgeous Beagle puppy named Neo. We homed him on 21 June and he was four months old on 18 August. The household now consists of Matriarch, Patriarch, two grumpy teens, 3 dogs, 1 cat and 1 snake. Never a dull moment, or quiet. It is a good job we are detached and remote. 

Here is hoping Year 9 in school brings Ryan better health, as the stress of school, once again beginning to build as he has to choose his options for his GCSEs. So much pressure on such young minds.  He has asked if he could begin Violin lessons in September through school which I think is an awesome idea so watch this space and I will endeavour to post a bit more regularly with updates on his progress. 

Thursday, 28 May 2015

Happy Birthday Panda

I can't believe it has been a year since I began documenting our journey and life living with Autism and as I have said many times before it is the most rewarding chaos I have ever had the honour of experiencing.

Our blog has received over 3,800 views and we have published 51 posts which is quite simply mind blowing. I am not sure what we did expect when we started this process but we never expected it to be this big and wonderful. 

To mark Panda's 1st birthday we are recapping the top 3 posts that you lovely readers have either clicked on or shared during the last 12 months. They are:

3rd place: Photograblog with 62 page views (and my favourite post).

2nd place:Myths & Misconceptions with 70 page views. 

and in 

1st place: Horror Friday with an amazing 71 page views. 

I particularly like this post and agree it certainly deserves a place in the top 3 due to the amazing description I was given of what an autistic meltdown is like. It also brings together in a cumulative summary the disastrous beginning Ryan experienced to his education and the amazing transformation we have fortunately seen since then to the amazing teenager he is today.

I would like to turn this post and celebration over to you now and ask you to vote for your other favourite post or posts and thank you all for the support family, friends and fellow bloggers have given to us over the years helping us all on our journey together. Please do feel free to share our blog with any one you think would enjoy our story and benefit from some of the information we have gathered together. 

Sunday, 17 May 2015

Sabastion's Story

Each morning we are born again. What we do today is what matters most. – Buddha. 

 Continuing on with our newly blessed peace and tranquillity Ryan and I went to stay with my parents for a couple of days during the Easter school break.  On our first night there Ryan and I settled down to watch Big Hero 6 as he had been nagging me for a while to watch it with him. I had no idea what this movie was but was just happy to spend some quality time with him particularly as he was inviting in to his world, his space. We were a short way through the movie when we both happened to notice a brightly flickering star or planet outside the window. It was mesmorisingly changing colours from red to blue to green.  I knew that my father has a wonderful set of binoculars permantly set up on a tripod for mum to watch her birds or for an occasional bit of star gazing. While I went to get them set up in the garden, Ryan hastily downloaded a star map onto his smartphone and we were quickly able to identify the wonder as Sirius.  Ryan quickly became enthralled and began googling the Star on his laptop, delighting then in telling me all the facts he had discovered. We soon forgot the movie and spent an awesome evening star gazing. Hobby #1

Now as you know from our previous blog post ‘Photograblog’ Ryan has a very keen interest in photography and is surprisingly good for a self taught teenage boy.  All his previous pictures have been taken simply on a Samsung Galaxy Note smartphone/phablet, but he has been having increasing problems with the basic machine and even more basic camera so hasn’t taken any photos for many months. He has been saving his pocket money and at the end of the Easter Break purchased himself a new Sony 21mp, 35x optical zoom digital camera. It was an awesome deal and he has re-immersed himself into his world of photography with a vengeance which is wonderful to see and a new digi-photograblog will be published soon. Hobby #2 (re-born).

I went to visit my sister in Birmingham just before the new school term began at the end of the Easter break and pleasantly discovered that she had a new corn snake in her ever growing collection of animals. She has owned her original corn snake for 15 years and recently agreed to take on a rescued corn from her local vet who knew she had one already. She has very  kindly gifted the rescue snake and full vivarium set up to Ryan as yet another new hobby and a way to get him off his computer obsession, the only other hobby he has had up to this point. It is a hobby that I too can enjoy with him as I have no interest in computers and gaming but love snakes. She is the most amazing sister I know.

We have now been the proud owners of our 7 year old female grey anery corn, named Sabastion (yes Ryan's choice of spelling and boys name :D) for 5 weeks now and are loving hobby #3.

Monday, 4 May 2015

The calm after the storm

I am so pleased that our previous blog post ‘X-box Meltdown’ has generated such a positive reaction and lovely comments. I had ended the post with the comment that I needed to find a hobby for Ryan that was as unique and individual as he is himself. 

One of the suggestions we received was to try Scouting. We actually tried Beavers when we first moved to Wales. The first group we tried told me they were not able to take on a child with Autism or any other differbility as they did not have the staff to support him. The second group we approached were fortunately far more welcoming and accommodating and they tried their very hardest to include Ryan, unfortunately it was too much for Ryan to cope with at such a young age, while we were all still learning to live with his diagnosis of Autism, that he eventually finished attending.  He is a creature of habit and comfort and as much as his older brother and dad love to go wild camping, Ryan and I are of the same mindset that we prefer the warmth and sanctity of home. Scouting is not for him.

Another suggestion we received was to try horse riding. Now this particular activity has not generally been advised for those of us that have Hypermobility. Myself and my eldest sadly suffer badly from Hypermobility syndrome, Ryan thankfully doesn’t appear to suffer too badly, however the movement generated from the action of horse riding can put an incredible amount of pressure and strain on our already weak joints and the danger of injury from falling is greatly increased for us also due to greater possibility of dislocations, tears and fractures. This idea too was therefore politely declined.

Since the meltdown episode at Easter things have been different for us all as a family and especially for Ryan. Even school have commented positively on the change that they too have observed in him. Think for a moment if you will please of a volcanic eruption. They are spectacular and completely devastating but once the lava has ceased spewing and then cooled there is a serene sense of calm and beauty. The soil is once again rich in nutrients and you quickly see new growth take root and bloom. This analogy perfectly describes and sums up Ryan’s most recent meltdown. A different child has emerged from the rubble and dust. He is calmer, more communicative, and more confident in himself. Not only was the meltdown an explosion of an obviously immense build up of pressure, frustrations and hormones; it seemed though to reset his hormonal balance and clear away a myriad of negative energy build up. How long this new clam will last is anyone’s guess, as new pressures begin once again to slowly build, but we are seizing the precious time we have nurturing all the rainbow of light that this newly established calm has so far produced.  We will explain more on what those new outcomes and changes are in the next post...Sabastion’s Story.

Tuesday, 28 April 2015

Xbox Meltdown

Ryan missed the last two weeks before the Easter term break as he was being treated for Glandular fever and severe anemia. I was given some school work to been done over the holiday once he was well enough so as not to fall too far behind in school. I asked him several times about completing it and things came to a head on the second Wednesday when at first he tried to lie that he had done the work, but then became quite rude verbally so I asked Dadi Skilts to help me out, but Ryan was this time really rude, so Duncan turned off the Xbox and it became a full blown melt down. He punched the bedroom door enough to make his hand bleed and then took several chunks out of my kitchen table.

Eventually cried himself out so I was then able to sit at the kitchen table and managed to talk him down, and I realised just how isolated from and scared of the world that Ryan feels and I am seriously concerned now about his total obsession with Xbox/Laptop and Skype as his way of not having to deal with or face the world. He is absolutely petrified of the future, where he is going to fit into the world and how school is already pressuring them to think about their options.  The mental health worries is the accumulation I think of constantly being ill, missing so much school and his general social problems from Autism teamed with typical puberty. The Wednesday evening was much calmer and we even talked through a plan of action for completing the outstanding work.  

The following day he came into town to walk Mojo with me I treated him to Heavenly ice cream and all was right with the world. We even sat together and did his Maths homework on the laptop. He really didn't want to go to the NAS Funsters session and although I should have gone I was just too tired emotionally and physically.  The blowout does seem to have helped him release some major stresses just like a volcano or earth quake and all is calm again for a while now while the stresses build again. It is up to me now to be more on the ball with him and try to have some smaller releases more often rather than one huge mega disaster.

I have suggested to him and had some tentative agreement from him that I truly think it would be a good idea to find a hobby that does not involve computers or gaming. He has never been remotely sporty so we need to find something just that little bit different, just like Ryan himself.....