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

Lymphoma, Cancer diagnosis

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. 

Sometimes you Choose the Battle quote,

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