Keep fighting and ask for another opinion.
The ENT consultant rang me at 6pm on Monday 25th July 2016 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 will 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 three 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 two week turn around seems more likely.
I telephoned the ENT department at 10am on Friday 29 July 2016 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 obviously 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 Ryan in for another general anaesthetic surgery (GA) on 9 August 2016. 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. Is it not fair that our consultants (he has seen 4) do not have a clue. Do I have to 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)!
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 as we were told by the first Paediatric Consultant that saw Ryan. 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 new PD disagreed with the first Pathologist whose initial findings were dysplastic cells.
The reason for the delay in reaching a diagnosis has been that the new PD had sent samples to Germany and also to London because they believe Ryan 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 hospital had 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 T-cell Lymphoma but we will not know the subtype until after the scans and bone marrow biopsy.
Dr C, our new paediatric haematologist said that Ryan has a rare form of lymphoma and never before found in a person so young, they have only ever seen it in older men generally of Asian descent and I do not know if that is good news or not. Can he fight it better being younger or if it will be harder to treat because they are not used to seeing it in youngsters so will not have a standard treatment plan?