While Noa lay passed out on my lap, Ben had the presence of mind to ask Dr. Kurtzberg some excellent questions and thank goodness, because we learned a lot!
WHAT DO THE STEM CELLS DO?
I had always assumed that the stem cells themselves created new brain tissue (or whatever new tissue was needed) – because the cool thing about stem cells is that they are undifferentiated, meaning they can be activated to become any kind of tissue. But apparently the theory is that stems cells used in this type of therapy do not become Noa’s new brain cells, rather they cause her current brain cells to re-activate and create new cells and/or new connections.
So, for example, one would not look at an MRI of her brain in a year and necessarily see anything different – it should not change the shape of her brain per se. BUT there is a special kind of MRI that could track what was happening on this tiny cellular level and they are hoping to get funding for that in the future so that they can do before and after MRI’s that can track this. Until then, the results are going to be mostly anecdotal.
HOW DO THEY KNOW THIS?
Apparently they have animal studies that seem to confirm this theory of how the stem cells work to activate existing cells. They also have animal studies that confirm that the stem cells seem to go to (or communicate) with the injured for affected area. The theory here seems to be that those cells send out some kind of signal that the stem cells recognizes. Again, this is what they surmise from what they have seen in these animal studies – and they really don’t pretend to understand why or how it works.
UMBILICAL STEM CELLS
Another interesting thing for anyone interested in the future of stem cell research, it appears that umbilical stem cells are much more stable than embryionic stem cells and both Dr. Kurtzberg, and the other doctor Ben talked to in Texas seemed to think that they were not as promising in terms of moving forward. I don’t want to get political here, but I think it’s important moving forward that we help to encourage the distinction between different kinds of stems cells.
Another interesting part of our discussion was about what they hoping to learn from this kind of treatment. It seems like a bit part of what they are looking to figure out is how the stem cells communicate with other cells in the body to activate them. Is there, perhaps, another way to activate those cells? So, it’s not necessarily (at least in this case) about harvesting the cells to create new organs, or replace old tissue, or all that sci-fi stuff that we often hear about in the TV blurbs.
WHAT DOES THIS MEAN IN TERMS OF OUR EXPECTATIONS?Well… I think it means that we just don’t know. And whatever happens, we may never know if it was the stem cells that made a difference. We’ll be following up with the folks at Duke every three months or so – and perhaps go back down at some time in the future for an exam. What are we looking for? Anything that falls outside of what we or her doctors or her therapists might have expected in her progress. Of course, we’re talking about a kid who has already surpassed expectations in many ways – so how do we measure what is outstanding?
WHAT YOU SHOULD KNOW ABOUT COLLECTING STEMS CELLS
If you, or someone you know, is considering saving their child’s umbilical cord blood… as you might imagine, I say do it, do it, do it! Get together with your friends and create a fund! You only needs so many blankets and burp cloths! Look, we didn’t expect to need these! Honestly, even if you just keep them for a few years, its worth it.
There are apparently two kinds of bags they store the cells in. We didn’t know this – but it’s important. Some companies store all the cells in one bag, some store them in 20/80 allotments – so that you can unfreeze and use just 80 percent and retain the other 20 percent for later. This seems like a good option to me. In our case, we didn’t have as many cells as the doctor would have hoped, so it was a non-issue for us and used all the stem cells. I’ll have Ben write a bit later about his conversation with various doctors about this – but we came to the conclusion that we were doing the best thing in using them all now. We didn’t want to look back and regret anything.
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