Digesting

So many details to write from both Monday's and today's appointments.

This is the point, however that we are having to be present with:

Best case scenario, Zoe has a 50/50 chance of survival.

Yes, Zoe does have osteopetrosis. The Seattle Cancer Care Alliance doc, Dr. Thomas Manley, said that they used to not rely on blood tests for diagnoses.

Based on the fact that she has all of the symptoms of osteopetrosis, she has a "clinical diagnosis" for it. Also, we found out that her red blood cell count is a bit low, further symptom markers for osteopetrosis: her increasing bone density reduces the bone marrow space and therefore decreases the ability to produce red blood cells.

We now are only waiting to see if the blood test will indicate what type of osteopetrosis she has.

Dr. Manley said that it is quite possible that the results will come back without a definitive answer as to type. In that case, they will work with the experts at MUSC in determining whether what she has can be treated by a bone marrow transplant.

There are types that, although even more rare, cannot. With such a determination, the only possible focus for Zoe would be end of life care.

As Jeff said, leaving the SCCA today-- It feels so strange to hope that she has a diagnosis that will allow for a bone marrow transplant.

Bone marrow transplant.

So, back to the best case scenario. Providing that she has a treatable form of osteopetrosis--then it's on to finding a donor. Neither Jeff nor I can be donors as it increases the likelihood that there will be rejection--we are both, at most, only half matches for her. She has no twin, no sibling that can be tested. The best hope is for an unrelated donor to be a full match. As we are not obscure ethnicities, there is a good likelihood for one to be located.

Many of you have mentioned that you would like to be tested. Thank you.

At this point, they will be searching an already established global database of donors to see if there is a match. When/if a match is found, there needs to be more testing and coordinating and then donating. The entire process takes at least 2 months and up to 3 or 4 months.

We did not bank Zoe's cord blood, but even cord blood is not always the best option either.

The BMT process has us in Children's Hospital for at least 5 weeks--that's if everything goes well, there are no infections, no complications, and no rejection issues.

Zoe has the added stress of needing surgery before the BMT. She will have to heal from that; on the outside, full healing could take up to 2 months. There is more to be told on the surgery topic, but that can wait. Important points are that a date has still not been set and that Dr. Manley intends to add his weight to the message that it needs to happen ASAP.

As I said, the process for finding and lining up a donor takes time anyway, so that has been put in motion today. Both Jeff and I gave blood (they need to look at our typing to help with determining hers) and Zoe's mouth was swabbed. They were going to take her blood there, but I was not happy that they did not have a baby set up. Zoe will have her blood drawn at Children's tomorrow.

To top everything off--I will have to wean Zoe.

Mother's milk is a powerful immunity enhancer, and that's just not a good thing when wiping a baby's immune system out. Talk about punching someone when they're down. She gets so much comfort from nursing.

You mean to tell me she's going to feel like crap from all the chemo they're going to give her, all the poking and prodding they will do to her--and she won't get to nurse??!

I could try weaning her now, but we need to keep her healthy through the surgery and up to the BMT, so nursing until then is good for her immunity. But, it seems like it would be unusually cruel to wean her at the same time her BMT process starts. Can't win either way

So, back to the odds. The doc said, that with the best case scenario of a perfectly matched non-relative donor, success rate is 50%. I suppose that's better than 10%, but in my glassy-eyed state right now, it doesn't comfort me.

She could stay. She could go. 50/50.

oh my sweet Zoe girl. please stay.