Today's journal entry is going to be easy. I'm going to cut and paste both the email I received from our oncologist and some additional comments I made when I sent the email out.
Here is my introduction to our oncologist's email:
Hot off the press (literally). As you will read (see email below), no clear indication of what the results actually mean. I know some of you may want to read into it, i.e. a sign that it ‘appears’ that the amount of NB cells detected is lower – but in the cancer world that really doesn't matter. The fact that there is cancer cells is the problem.
The big question – which Dr Twist doesn't know – is whether the cells are differentiating, i.e. have the NB cells been converted to the ones that cannot reproduce or have been ‘matured’. Keeping in mind there are different ways to conquer this disease, i.e. killing the cells or removing their reproductive capability. In Jonathan’s case – it can be that he doesn't really have any disease and what is remaining are cells that have differentiated.
The original email from our oncologist:
Hi Walter,
the pathologists needed the 'special stain' (synaptophysin) to see a few neuroblastoma cells in the bone marrow biopsy - they were mostly rare single cells, since they could only detect with that stain, they could not get a real look at the morphology of the cells to see if they looked like they were differentiating in any way. They could find these rare cells on both right and left side, but again i think they were rather surprised since they would not be able to pick out single cells like this with routine staining (usually the cells grow in clumps of several NB cells together, so they are easy to visualize compared to normal blood cells). so, I think it is fair to say that we are finding rare cells that are below the level of routine detection - true minimal residual disease - but understanding the significance of this is a harder question ( no good data when we are in this realm). the MIBG is negative and the CT looks fine too.
Clare
So - what does this all mean? To me - it sounds like a positive step in the right direction. It appears that the amount of cancer he has is continuing to decrease and that the disease is responding to the treatment. The biggest positive is that the stain test is still proving to be a viable component of continuing to detect whether Jonathan has disease - since I'll rather know he has disease than live in a fantasy world thinking he does not have any disease and then he has a relapse within five years.
This leads me on to another topic. We - Gabby, the kids and I, have been battling this disease for over 16 months now. I remember during our discussions with various relatives - early on in Jonathan's treatment - that the general thought that it will be through God that Jonathan will be healed and - if he isn't healed - then it's God's will too and maybe there is another purpose, i.e. his suffering might help in some small way. Well, my response is that this is a load of bull.
Don't get me wrong - I'm not saying that I don't believe in God - I do believe in God. What I don't understand is that why does EVERYTHING have to be attributed to God. We - as human beings - have free will - and it's our own free will that causes things to happen in our lives - so why can it not be that people live or die, get cured or not cured because of the luck of the dice, or the science of medicine!
1 comment:
Walter - I do not have all the answers but you ask why do we (I will say, why do I) attribute everything to God? I say "In the beginning was the Word and the Word was with God and the Word was God; he was in the beginning with God. All things were made through him and without him nothing came to be. Whatever has come to be, found life in him, life for which for humans was also light. Light that shines in the dark: light that darkness could not overcome. John 1:1-5.
I do believe I have free will - to choose - God allowed it so. I do know that when we choose in accordance with His will for us, we find the peace and harmony with our souls that allows us to be fully human, fully powerful - to regain our original humanness.
Me, I'm bullish for God for He is awesome - allow Him and he will lift you up. Your family has been carrying this cross a long time, and I know you have fallen from this heavy burden and these are the times we question. I know because I do it myself.
You are blessed to be able to ahve access to such great healthcare and medical practitioners. What would have been different if you were not in California? If you were in Trinidad or elsewhere? You and your family are exactly where you need to be. Pray together as a family, and continue to be strengthened by each other's love.
Carpe diem, Jill
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