Tuesday, 6 December 2016


A very surreal day was had Thursday 22 Sept 2016, when Ryan spent a day at Velindre Cancer Centre, Cardiff in their Mould Room where he had his personal mask made for his impending 5-week course of radiotherapy (RT).
Radiotherapy Mask Moulding
Radiotherapy Mask Making

He then had to endure yet another CT scan to mark the mask up for the lasers to do their thing. He will be having 50gy in 25 fractions. 1 session every day for 5 weeks on lymph tissue in his tonsil and throat areas. 

Side effects will be his ability to swallow. Loss of taste buds. Salivary glands dry up, sickness and extreme fatigue, all of which will begin around 2 weeks into the treatment and last for 3-6 weeks after treatment has finished. 

He is also having RT first and then Chemo which I understand is usually the other way around so not clear on why. I believe it is because he isn't well enough to begin IV chemo and has been on Steroid chemo up to now in an attempt to build him up a bit, but I don't see that it has worked. If anything, he has continued to deteriorate.

We went back into hospital on Monday 3 October to have his NG tube removed and a PEG tube fitted instead ready for RT.

So much has happened in such a short space I can't see the woods for the trees. I find I just don't have the confidence to distinguish between what is disease and what is general teenage grumpiness or what is something as serious as Sepsis and I didn't realise he was 'that bad' so feeling a bit useless right now, but trying to accept it is all a steep learning curve.

We finally got to start RT which has been a breeze. The sessions he missed last week due to the Sepsis have been 'added' on to the other end so his last session will unfortunately be on his 15 birthday. We have however arranged for Dreams and Wishes to deliver his first ever new phone that day as a small positive.

The Anti-sickness tablets are working well, but the mouth ulcers are awful, bless him. We have 3 different types of mouthwash to uses each one twice a day. He now has 3 different types of mouthwash, 2 pain meds, gastric tablets, anti-sickness tabs, dioralyte and 2 different laxatives. 🙈

To help with the side effects to his mouth, it was suggested Ryan try a soft electronic toothbrush to help with his oral hygiene. I took him shopping where he chose a Spiderman one. I thought it was funny at 14, but if it helps him to brush than who is to judge and he has been using it well ever since.  One of the mouthwashes however did not go down so well. Caphosol I admit doesn't taste particularly nice (I tried a bit), but to him, he said it is like the fires of Mordor. That was the first wash they gave us. So, then we went to chlorhexidine, but that dried his mouth more. Next was a homemade salt water wash and now we have benzydamine and gelclair to try. Gelcair didn't even get off the starting block, but the benzydamine (Difflam) has been a trusty faithful throughout his treatment to date. 
Radiotherapy is the easy bit. He just lays on a bed for 10 mins and the beam does its thing. There is no pain, he can't feel it.  It is the side effects hours after, where we sit at night as I gently rub his back while he vomits huge amounts of mucus as the tumour breaks down.

Before any of this, he already had serious issues with sensory processing due to his autism, resulting in sensitivity to tastes and textures, in addition to hypersensitivity to noise, light and touch.  He is 15yo and he had only ever once hugged me in his life and I have never had a kiss, so you can imagine how difficult it is for him to have medics fussing around him, noisy machines, bright hospital lights. It is dreadful to go through cancer treatment and made worse for him when these 'ordinary background sounds/lights/touch that we take for granted are physically painful for him. For the majority of his treatments so far, they have had to sedate him where possible. He is doing amazingly well considering. He has had a couple of minor meltdowns but who wouldn't. We will get there. It is just 1 step forward and about 5 backwards at the moment. 

Wednesday, 23 November 2016

Cancer Sucks

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Wednesday 23 November 2016 saw Ryan's first check up with the GP nurse since being discharged after his emergency surgery, which is a whole other story that I will tell in a separate post titled Peritonitis

On the way to the surgery in the car Ryan begins a conversation and it goes something like this:

Tuesday, 22 November 2016

I Am...Autism

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I Am...

I asked Ryan to complete the following sentences.  I gave him the two words in bold and he completed the rest. It gives an insight into his Autistic mind. When you ask, say the two word prompt and try to take the first thing that they reply.

I am...alive.

I wonder...what's in space.

I hear...sounds.

I see...things.

I want...eternal life.

I pretend...that I am happy.

I feel...nothing.

I worry...that people will find out.

I cry...every night.

I understand...that humans shouldn't exist.

I say...offensive things.

I dream...of a time gone by.

I try...to smile.

I hope...it will all be over soon.

I am...

Monday, 21 November 2016

Head and Neck Cancer

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Epstein Barr Virus

EBV positive extranodal NK/T cell non-Hodgkin lymphoma nasal type, Stage 1E.

It's a bit of a mouth full but this is Ryan's official diagnosis. It is a rare lymphoma, but extremely rare in children. It is extranodal in his tonsillar area at the back of his mouth in the oropharynx or Waldeyer's ring. Caused by the Epstein Barr Virus that usually creates Glandular Fever. 

Thursday, 3 November 2016

All guns blazing

After speaking to Dr Ed, and believing I had been paranoid and neurotic all along, I tried for a few days accepting what we were first told, that Ryan's prolonged illness was a result of his poor diet and dental hygiene. I was still wrestling with how I convince my autistic teen to change his eating habits while we were up against his severe sensory processing issues when things suddenly changed again for us. 
It was decided that a 2nd biopsy operation was not needed as the new Pathology Department (PD) had enough sample from the first op to work with. The 2nd PD disagreed with the first Pathologist who's initial findings were dysplastic cells. The reason for delay in reaching a diagnosis has been that 2nd PD have sent samples to Germany and to London, because they believe he has a rare form of Lymphoma. ENT have only seen 1 other case in 17 years and it was in a 22 year old male. Carmarthen and Swansea decided we needed to be referred to a Paediatric Haematologist in Cardiff so more waiting for that appointment.
Another week on and we went to University Hospital of Wales, Cardiff on Friday 26 August as a day patient to meet the team at the Teenage Cancer Trust unit that will be conducting his treatment. 
A full day of talking, tests and examining ensued with arrangements made for a bone marrow biopsy, PET-CT scan and to have his central line fitted ready for chemo to start on possibly Monday 5th September, so after months of waiting and uncertainty it is now all guns blazing. Ryan received a welcome gift of a confirmed diagnosis of Tcell Lymphoma but we wont know the sub type will after the scans and biopsy. 
Dr C, haematologist said that Ry has a rare form of lymphoma to be found in a person so young, they have only ever seen it in older men generally and I don't know if that is good news or not, that he can fight it better being younger or if it will be harder to treat because they aren't used to seeing it in youngsters so won't have a standard treatment plan.

Sunday, 30 October 2016

Inconclusive results!

The ENT consultant rang me at 6pm on Monday 25th July to say that the biopsy results were not yet back. So our appointment for Tuesday 26th did not happen as I had expected it wouldn't. He couldn't give me any indication of timing, but said he will chase the lab each day for me and promised to call me as soon as the results were back, so that we can then arrange an appointment to discuss them. I'll be surprised if a consultant really has the time to do this, so we shall see. I was quite impressed though that a consultant found the time to actually call me himself, although I did laugh at him when he said, "Try not to worry." The limbo I think is the hardest when waiting for results. 
I had asked the doctors 3 times when we were on the ward the previous week, if they really thought the biopsy results would be back in a week. I fully expected them not to be, although I had hoped we might know. I said at the time that I didn't reckon they will be back before Friday at the earliest and wouldn't be surprised if it isn't until the Tuesday of the next week, as a 2 week turn around seems more likely.
I telephoned the ENT department at 10am on the Friday morning as I had been requested to do. At 11:45am that day the secretary rang me back to say our consultant could see us at 3:30pm that afternoon with the results. We got to the hospital, waited almost an hour for the results and yes, you've guessed it. Inconclusive! Don't you just love that word. No, me neither! The cells are abnormal, but not obvioulsy cancer (YAY)! However the pathologist has absolutely no idea what the masses are (NOT YAY)!
Our ENT consultant (Dr Ed) said that my son's case had been discussed at a multidisciplinary meeting on the Thursday afternoon of the day before, but no one in attendance was able to commit to a diagnosis. My son is a medical mystery. (Still not yay)! Another pathologist has offered to take on the case but wants fresh biopsy samples to work with so Dr Ed has booked Ry in for another GA surgery on 9 Aug. This is where I lost the plot. 
I was not prepared for him to go through another GA op. His stats were worrying low after the last one it it took hours for him to come round. I decided instead that I was going to explore the option of a private ENT consult with either Birmingham Children's hospital or GOSH. As it not fair that our consultants (he has seen 4) don't have a clue. Or, do I accept there is nothing medically wrong and hope that one day he improves on his own as he gets older, we have managed for 2 years? 
The only thing Dr Ed could say for certain is that there is no way it is Lymphoma as ALL his lymph nodes were absolutely fine (YAY). So I had been worrying all this time for nothing after all. (Famous last words)!

Thursday, 27 October 2016

Biopsy #1

Monday 18 July 2016 saw another full day at the Carmarthen Hospital children's ward. My gorgeous boy had an ENT appointment on the Monday morning to have an endoscopy. The image was amazingly clear and showed a large mass, covering the base of tongue, left tonsil area and soft pallete area. By 2pm that afternoon he had an MRI scan done and was booked in for an emergency 2 hour Biopsy operation the following morning of Tuesday 19th under general anesthetic. With the results due 10 days later on the following Friday. 
So up to this point we had gone through two years of illness. 5 months of real hell and suddenly in a week had visited almost every possible department the NHS has to offer.  I wont lie, I have had better days than this particular Monday, but we are finally moving forward. Lymphoma is top of the list with Squamous cell carcinoma also being looked at. 
As daft as it may sound I was actually relieved in a twisted kind of way that I was right. I knew something had been very wrong, for a very long time. At least once we know for definite we can have a plan of attack and start treatment. 
The biopsy operation went well, although Ryan's blood pressure was quite low afterwards and he took a longer time than is usually seen to come round fully. The Surgeons were somewhat puzzled by the ulcerated masses they found. They have seen similar before but in older men who are heavy smokers. Several biopsies were sent off straight from op and we were advised to return for an appointment back at the children's ward on Tuesday 26th to discuss the results, (if they come back with a clear answer of course). This surprised me as Biopsies always take longer than a week for testing, surly?
He had to have an xray last that night on his jaw area to see if there was any spread and the doctors allowed us home the following day wait without worrying. What a laugh. 

Tuesday, 25 October 2016

Cilgerran Children's Ward

We went back to see the Paediatrican on 13 July 2016 to discuss the blood tests that were done the previous month. Ryan's hemoglobin was low. ESR 33 and CRP had come down slightly to 25. Unfortunately he had lost more weight so the decision was made to admit him to the children's ward straight away. 
The plan was to carry out an MRI scan and ultrasound as well as more blood tests. A 24 hour urine screen and temperature monitoring, to rule out a Neuroblastoma. I had absolutely no idea what on earth that was and after a quick google found  a malignant tumour composed of neuroblasts, most commonly in the adrenal gland. The symptoms didn't fit, but hey, no one had listened to me up to this point and no one had any intention of starting now. 

After 3 days on the Children's ward, the ultrasound was clear and ruled out neuroblastoma, no shock there, well not to me anyway.  It was decided to carry out a CT scan with contrast of the neck instead of MRI to see if there was anything obviously causing the constant sore throats. The scan showed 'some cervical glands present and fullness of the vallecula on the left'. I have written that exactly as the consultant said it to me. I hope someone maybe able to translate it for me but basically it was concerning enough to require further investigation and we are back onto Lymphoma, but still no-one was interested in listening to me. 
They allowed us home for the weekend and we we required back on Monday 18th July for appointment with ENT consultant to discuss an endoscopy and/or barium swallow.
From what I can understand from the CT scan results is that his lymph nodes are swollen on his left side in the area at the base of his tongue next to his epiglottis. This swelling and inflammation is most likely the 'lump in his throat' that he can feel and why it is so difficult for him to physically swallow food or liquid. 
I was more than prepared to be quite firm with what I wanted to be done to proceed with getting a firm diagnosis at the ENT appointment.
At this point Ryan had been ill for 22 months I was ready to accept whatever diagnosis. It is the not knowing that is the hardest. At least once we know we can have a plan of attack.

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

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Lymphoma Diagnosis

We received the gut-wrenching news that haematology consultants at Children's 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.

Up to this point Ryan had been ill for the preceding 2 years battling glandular fever that never improved and I battled with GPs to try and discover what was wrong. 

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The Battle Chooses You

There were still further tests that were needed, as a few of the 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 in September 2016. It is a bit of a mouthful literally as the lymphoma caused a soft tissue tumor to form in his throat.

Steroid Chemotherapy commenced while planning began ready for 5 weeks of intense Radiotherapy before embarking on six months of SMILE chemotherapy protocol.

Changing four seasons road trip

Glandular Fever

Ryan's medical team consists of haematologists, pathologists, histologists, immunologists and endocrinologists, 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. The children's hospital in Wales have never used the SMILE Chemotherapy protocol before.

Only one other adult is known to have had NK/T-cell in Wales approximately ten years ago and I have found only one other adult male in England that battled the same diagnosis two years ago. I have searched the world to try and find another child that had gone through this same treatment, but have yet to find another. As much as I do not want any other child to have suffered this, I cannot believe that Ryan really is that unique.

Lymphoma Road

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

Photograblog Lymphoma Road