The "Salvage" Plan
So Jaymun's original Leukemia was a strange type remember? Those "blueberry muffin" skin bruises? Well, back then the leukemia was always in the skin and not in his blood and bone marrow. They call that extra-medullar. The other place extra-medullar leukemia could be would be in the central nervous system (CNS). There is a blood-brain barrier that separates the blood system from the CNS more strictly than from the skin. Last time though, the cancer was undetectable in the CNS. That, however, doesn't mean there was not trace amounts there. Since during his entire last treatment - the cancer never went into the blood / bone marrow, and now it suddenly is relapsed in his CNS - that follows the same pattern - extra-medullar leukemia.
It would make less sense that the cancer started in the skin, traveled to the blood, and then back to the CNS system - because we never saw it in the blood before. It started extramedularly in the skin. So we have to assume that it was at the same time in the CNS system (from the beginning), just undedectable - and that we simply didn't get it all. Remember - when we finished the first rounds of chemo before - there were still some spots left on the skin that we had to use radiation to clear? Well, typically the doctors assume there are cancerous cells like that hidden in the nervous system (spine, cranium), so they use cranial and spinal radiation to insure every last vestige of cancer is targeted.
However, last time Jaymun was too young for CNS radiation - the side effects would have been too potentially severe. So it seems that we killed the cancer from his skin - and kept it out of his blood - however we must have missed some cells in his CNS system - which is where it has now relapsed. In addition, since it is a relapse, the cancer is now more resistant, and somehow a small amount HAS traversed the blood-brain barrier and it is just beginning to infect his bone marrow. The 2% blast count would normally be acceptable - but under microscope they can tell that even that small amount is cancerous already.
So, that means that we have to basically do the chemo drill over again (at this point it is called "salvage"). Except for that since it is so small in his bone marrow, and not in his skin - and very targetable in his CNS - we will attempt to get him into remission with one round - and then move on to transplant options. They will do the intrathecal (spinal fluid) chemotherapy, as well as high-dose IV chemo. That way it will blanket his entire system, including both directions across the blood-brain barrier (in case there is a stubborn group of cells sitting in there somehow).
That is where we will have decisions to make, such as whether or not to do another sibling transplant from his "perfect match" brother, or do try something more experimental such as new protocols at St. Judes. In any event, we will probably have to do the CNS radiation (also whole body? - not sure).
We seem to be getting his pain under general control, he ate better today, and started drinking bottles again. His IV came out tonight - what a struggle to get a new one in - I felt bad for Jaymun and the poor nurses - usually they get it right away but for some odd reason it just wouldn't work - so they finally gave up for the night - he's getting a central line tomorrow anyway.
So... Here we go again. What we are basically doing is using targeted drugs to destroy all what is detectable of his immune system. Since there were only .02 blasts in his blood to begin with (10^9 cells), and since we are only leaving .01 of his entire system left (10^7 cells), then .02 times .01 is .0002 cancer remaining. But the drugs do not kill the blood cells on contact - they only kill them as they reproduce. And since cancer cells reproduce faster - if we give chemo enough to just barely allow his blood to recover - chances are we killed all the cancer cells.
However - during this process we have to wait weeks and weeks for his immune system to recover - during which he is very vulnerable to infections.
Specific things to pray for.
#1) That the chemo kills every last cancer cell
#2) That Jaymun's body is protected from other toxic effects - that his mind, eyes, ears, LIVER, etc. are kept safe
#3) That Jaymun's body is protected from new cancers (chemo is very toxic)
#4) That Jaymun's doctors and parents make the right decisions for him
#5) That as his immune system is weak - he is protected from infections
#6) That he continues to eat and drink well - regular foods are better for his system than IV nutrition
#7) That this little two-year old will have happiness and a meaningfull life even though he is in the hospital