Ryan has been ill since September 2014 with recurring sore throats and temperatures, indicative of tonsillitis. He was diagnosed with the Epstein Barr Virus which causes Glandular Fever in March 2015 and missed almost 3 months of school.
His health did not improve over the next year 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 lasts 4 days on average)
- Night sweats
- Dizzy spells
- Mouth ulcers
His CRP reading was 31 in May 2016. An average CRP should be below 5. However Ryan reached 331 when he suffered from Sepsis, but that is a different story for another blog post.
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 the PC on 13th June 2016. The PC felt Ryan's problems were down to poor diet and poor oral hygiene, but "for completeness" agreed to run some tests.
Ryan had a chest x-ray and every single possible blood test performed that afternoon. I received a letter on 30th June from PC explaining cervical glands were present and that he will discuss the results in detail at our next appointment a month later.
Children's Hospital and Paediatrician
We went back to see the Paediatrician on 13 July 2016 to discuss the blood tests that were done the previous month. Ryan's haemoglobin 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 Hospital 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 may be 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 were required back on Monday 18th July 2016 for an appointment with an 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.
ENT Appointment and Biopsy #1
Monday 18 July 2016 saw another full day at the Hospital's 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 palate 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 anaesthetic. 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 the operation and we were advised to return for an appointment back at the children's ward on Tuesday 26 July to discuss the results, (if they come back with a clear answer of course).
Ryan had to have an x-ray that night on his jaw area to see if there was any spread and the doctors allowed us home the following day to wait without trying to worrying. What a laugh that was.