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.

1 comment:

  1. As I read this 3 months later - I fully appreciate what Ryan and family are going through.


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