We were waiting for two days for the phone call from Donal’s consultant, I was beside myself with worry and spent most of the two days in tears. Our trip to Michigan to start Donal on a clinical trial, was all planned with the hospital, plane tickets booked for the following morning, but I couldn’t really face packing as I knew we wouldn’t be going nowhere if Donal didn’t get the all clear.
The phone did eventually ring at lunchtime on Friday 13th (its a good job we aren’t superstitious) February. The phone call started with “How are you?” I wanted to shout “How do you THINK!” but just said “in pieces”. “It’s good news” he said, but went on to explain the results of all the scans and areas that they would paying particular attention to over the next few year, by this stage I just couldn’t speak at all, the stress and confusion just took over when Andy asked “Is he in Remission?”, “Oh yes, he is” was the reply. You think that you would be jumping up and down, screaming with joy but it wasn’t like that. It was almost more than we could take in, even though they were the words we wanted to hear and at many stages doubted that we would ever get to this point, but we couldn’t quite believe it or process it.
Donal was playing lego games on the Xbox in the kitchen, we got him to pause it and said to him “You know that you have been telling people you have cancer, you can now tell them that you HAD cancer, its all gone!”, we danced round the kitchen table, shouting, it’s gone, it’s gone, it’s gone!!!
There was no time to really celebrate or even to let the news sink in, we were off to America at 7am the next morning, there was packing to be done, get James to his grandparents, Nelly the dog to the kennels, it was all go. It was important to us that we went straight away as if we were waiting a few weeks or even days, they would have to re-do Donal’s bone marrow biopsy before he could start the trial and it is a horrible procedure that means a general anesthetic and leaves him with pain for a few days, we would do anything to avoid that. So the next morning, we bundled him into the car and started the 22 hour journey to Grand Rapids, Michigan.
The trial is investigating a drug called DFMO, the hope is that this drug will improve Donal’s chances of staying cancer free. We had been told by our consultant that there is a 50% chance that Donal will relapse and most relapses happen within the first 18 months of remission. If he does relapse, we were told that there is about a 10% chance of survival and that is optimistic. This is why we want to try and do whatever we can to prevent this cancer coming back even if that means taking Donal over to the USA every 3 months.
It was not a last minute decision to enroll Donal on this trial, we have been deliberating about it for some time, talking with the consultants in the USA and Ireland, weighing up the pros and cons and talking it through together for hours. It is certainly not an easy decision to make. In the end we thought of all Donal has been through in the last 15 months, and we decided that if there was anything we could do to improve his chances of staying cancer free and not going through that again, we have to give it a shot.