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)!

1 comment:

  1. And so it goes on....... If it wasn't so serious - it would be the joke of the century!


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