Three weeks ago we went up to Bristol so that my son could have an operation to remove a meningioma. The operation was cancelled and we've been waiting to hear from the hospital about the rescheduled surgery.
The week before last Rhys had an appointment at our local hospital for an MRI scan. It was to check the area where he'd had a malignant peripheral nerve sheaf tumour removed last year and resulted in his spending a lot of his summer in Bristol having chemotherapy.
Last week I spoke with his consultant's secretary to see if the results were back. She arranged for his consultant to give me a ring which he duly did. The report from the radiologist had been sent to Bristol for the doctors there to take a look at and produce a final report. He promised that as soon as the report was back he would ring us.
Yesterday afternoon the phone rang and it was his secretary. Could we come into the hospital for 4pm to see Rhys' consultant? Of course we could.
Rhys wasn't around at that point. He's been helping out and the playgroup that he volunteered at during his childcare course at college. We would have to pick him up from there when he finished.
Coming off the phone both his Mum and I knew that we weren't going to be receiving good news. You don't get asked to go into hospital to see a consultant to receive good news. As much as we tried to be positive and come up with different reasons as to why his consultant would want to see us the reality was we knew that we were going to be told that there was something wrong. Whether it was to do with the tumour from last year or something else we didn't know.
After completely missing my son at the playgroup because he'd come out a different door and had a lift home we drove back to the house and collected him.
At the hospital we made our way up to the children's outpatients clinic. We actually went in separate lifts because I thought the one that Rhys and his Mum got in was going to go down a level first. In the end they got to the clinic before me. Rhys' consultant on seeing them asked where I was, another sign that the news wasn't going to be good.
After about half an hour waiting while some other patients were seen we went into the consultant's room along with the Sister that was on duty in the clinic at the time. Yet another indication that something wasn't right. You don't normally have a Sister or senior nurse in with you unless its to allow you to go over what you've been told afterwards once you've digested the news.
Sitting down his consultant broke the news to us. The scans showed a 1 inch tumour in the same location as the one that was removed last year. Surgery would be needed to remove it, and is in the process of being scheduled by Bristol. The operation to remove his meningioma has been postponed as that isn't as high a priority as removing this new one.
I'm not sure what reaction the consultant and Sister were expecting from us. I think after 15 years of dealing with leukemia, bone marrow transplant, tumours, surgery, chemotherapy, radiotherapy and not just for Rhys but also other family members the news wasn't that much of a surprise. My wife shed a few tears at confirmation of what we already suspected. Rhys and I took the news very calmly.
We talked about what will be happening. Bristol will contact us once the surgery has been scheduled and we will head there so that Rhys can have the operation. After he's recovered from that then another course of radiotherapy will probably be the order of the day.
Last year there was a lot of concern about his kidneys. The surgery was extremely tricky and I suspect will be as tricky this time, although the tumour is smaller. Another dose of radiotherapy is not going to help his kidneys and there is the risk that one of them is going to pack in this time, not that we've discussed that with Rhys. It may even be that this time they really do remove one of his kidneys, something that was a possibility last year.
So once again we find ourselves in the delightful situation of my son undergoing surgery while my wife and I wait anxiously for him to come through it. At least this time we are a bit more prepared having been through it once already.
Rhys' consultant commented that there is something that he has to do with his life that he's not done yet. He's been through two relapses for acute lymphoblastic leukemia, a bone marrow transplant, the nerve sheaf tumour, still has a meningioma and now has to have another operation to remove a tumour. In addition to all that he has neurofibromatosis. We have seen children and adults go through far less and not make it. So for some reason he continues to go on.
As we sat there yesterday being told the news I couldn't help but realise something.
Three weeks ago we were waiting for him to have surgery for the meningioma. There were no beds available, a number of emergencies had come up that needed to be dealt with and there were patients in other hospitals waiting to come into the children's hospital for treatment. All of this meant that Rhys' operation was cancelled.
Two weeks after the operation was cancelled he had the MRI scan, something that would not have occurred if his surgery had gone ahead as planned. If the MRI had not happened then we wouldn't know about the tumour. By the time a MRI was then scheduled and the results came back the tumour would have been a lot bigger and considerably more difficult to remove. Its going to be bad enough and we hope that we get the right surgeon operating on him because that will ensure that the surgery does happen. The wrong surgeon may decide its too difficult and abandon the operation.
When I was thinking about all this I realised that somewhere, somehow, someone is looking out for him. Its too much of a coincidence that one operation is cancelled, a scan is then done for something else and that reveals that he needs more urgent surgery.
I don't know where, I don't know how, but I have a good inclining of who.
So somewhere Rhys' Nanny and Grampa are watching over him and keeping him safe.
Thank you Mum, thank you Phil for keeping my baby boy safe.