Joe's bone marrow sample results came back on Monday. The Minimum Residual Disease (MRD)test was positive or high risk, depending on who you talk to. The risk refers to risk of relapse, which involves more intensive treatment and lower survival rates. We had to leg it down to Cambridge at short notice to discuss the next phases of treatment.
Joe has been in the lowest risk bracket throughout his treatment: no genetic problems, low count at start, good initial response. We were entered for a trial where he could have even less treatment than normal to see if it still worked. But the MRD result put paid to that.
The doctor wanted us to enter a different trial, where children with higher risk of relapse got either the normal treatment from which some would relapse, or the more aggressive Regimen C from which they thought fewer would relapse. Naturally the more intense treatment involved more chemo and more side-effects.
"What do you want to do?" asks the doctor.
"What should we do?"
"I don't know."
That is correct. He didn't know. And he wanted us to enter the trial, but he couldn't push it on us, because that's the rules. So, in fact, he couldn't help us at all.
No matter what we asked we couldn't get through. Except when we sounded like we were leaning away from the trial.
"It will in no way prejudice your service."
"Whichever way you decide, we will be able to make a strong case that it was the right decision."
"Children get used to the side-effects and they reduce. And at the same time there may be less chance of relapse."
"We don't know if it will definitely reduce the chance of relapse, but that's why we're running the trial."
He did his best. Or nearly did. He tried to say he would put his own child in.
However, noone could say that Joe needed the heavier treatment. Or that it would prevent relapse.
We had to go out and ring my sister.
I think one of the other doctors gave ours a hard time while we were thinking about it, but I don't know if it was for not selling hard enough or for selling too hard.
This was the clincher: in the trial he has a 50:50 chance of getting Regimen C or what he's already on (Regimen A). So even if he went in, he might not get it. We decided to stick with the might.
We always worried about the treatment making Joe sicker than the disease. We couldn't justify making him still sicker, just to see what happened. And basing that decision on the toss of a computerised coin.
With some decisions you never really know if you made the right one. With this decision we will have to live with it. The only really helpful thing is that he only ever had a 50-50 chance of getting Regimen C. They said they would not have allowed him to go onto Regimen C without the 50-50 randomisation.
I'd love to know what the doctor really thought. He said we'd made the right decision, but I think that's in the rules too: he has to.
We're not tossing a coin to decide what happens and we're not making him sicker on purpose. I wish that made me feel better.
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2 comments:
I am struggling to think of something very comforting to say, so will stick with a universal 'thinking about you'. Lots of love, (Uncle Sid's) Lou x
You can only ever make a choice based on gut feeling. When you are so close to the person you are making the choise for then it is harder still. Whatever decision you make throughout this whole ordeal will be the one you decide and feel is best and you are doing that purley based or your loving connection to your little boy, which will always make it the right one. My thoughts are with you all as always. Laura xx
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