Milking, Part 3

Zoe will be weaned by next Saturday. Come to find out after all the gyrations on this subject that SCCA flat-out forbids nursing during transplant. After meeting with one of the oncologists yesterday, Dr. Delaney, I understand more the rationale behind the mandate.

Dr. Delaney confirmed that it was not a proven risk, and she certainly knew where I was coming from as a mother who had nursed her own two children. But she made a couple very convincing arguments that gave us pause:

1. Osteopetrosis is a particularly difficult disorder to transplant for. The reduced bone marrow space makes engraftment more difficult. If engraftment is successful, then the next, even bigger concern is Graft Versus Host Disease (GVHD). While maternal lymphocyte transmission risk is small during breastfeeding, it's still possible. Even one errant T-cell that makes its way from my milk into Zoe's body (beyond the GI tract) could wreak enough havoc to either interfere with engraftment or complicate GVHD.
2. SCCA oncologists have witnessed transplant failures they believe were directly linked to the patient being breastfed during the process. When asked why this had not been written about, her response was that--understandably-- there are so many aspects yet to be written about in this field. It comes down to the researchers and docs directly involved having enough time to do so.

Certainly, there are many anecdotal stories of children flying through the transplant process without a major problem while continuing to nurse. But, Zoe seems to be a more tenuous case. I've reached the point of admitting that I don't know enough on the subject to justify my continued obstinance. She will have had a full year of nursing--and, she now takes a bottle of goat milk with as much gusto as the breast. Both Jeff and I are resigned that weaning must be done.

And, it still really sucks.

I did inquire about resuming the nursing on the other side of the process. I had thought to pump three times a day to maintain at least a small milk supply for her to enjoy when the go-ahead was given. But, the word was that it would be six months MINIMUM before she would be allowed to nurse again, and much more likely, at least a year. I am devoted to my girl, but the prospect of pumping for a year is a deal killer. Even if I were willing, there's no guarantee that she'd even accept the breast after that long off of it.

So, I've got one more week of this unique experience that mothers get to have with their babies. And I am soaking up every last second of it.

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We didn't really realize how much of the process would start before she was admitted on the 10th, but now we see that the big ball has already been set in determined motion. Tuesday and Wednesday were long days at SCCA; next Monday and Tuesday will be just as long with the meetings and classes we need to attend on the various subjects involving home care for a transplant patient. Wednesday will be Zoe's surgery to put in her central line. Thursday they want us to come in for who-knows-what, but something important, I'm sure. Then, Zoe will be admitted on Saturday the 10th.

Which reminds me: the results of Zoe's nasal aspiration came back positive for a "corona virus." While it could prove to be a nuisance, it's not a virus considered too dangerous to continue with the current schedule. Provided that she continues to improve, she should still be good to go on the 10th.

We found out some more details on the donor front--mixed things that don't necessarily comfort me on the whole. The good news is that she has a donor; some 30% of patients don't have good matches. However, those that do usually have around 100 to choose from. Zoe had 3. Of those 3, only one responded--the 39 year old woman we mentioned prior.

As great as it is that the woman is a 10 out of 10 match, there are a couple drawbacks. Number one, she wasn't willing to donate marrow, but opted instead for donating stem cells. While not the end of the world, it's not the first choice for what the doctors wanted for Zoe. Stem cells can still definitely work--and the good news there is that with stem cells they will know more quickly whether engraftment happens as stem cells engraft faster than bone marrow. I am realizing that I don't remember why the doctors' first choice was marrow over stem cells, but that was what they had originally told us.

The other drawback is that transplants with female donors have a higher rate of failure than those with male donors. It really has more to do with women who have had children, rather than the gender alone. Mothers produce more antibodies with each child they bear, which makes GVHD more possible. We don't know if Zoe's donor has had children, but, given her age, it's highly likely.

Again, Zoe's match is still pretty damn great, but I gathered that they would have done some more poking around for options if it weren't for the fact that insurance limits how much can be spent on the search process.

Given the scenario that these donor cells fail to engraft, Delaney said that cord blood is definitely a fine alternative for a back-up plan. (Good to know there is a back-up!) She said that, in fact, all of their recent osteopetrosis patients have been transplanted with mismatched cord blood as there were no good donor matches to be had.

Again, their success rate with osteopetrosis is 50% with unrelated donors, but she said to keep in mind that this number goes way back to 1981 with their first osteopetrosis patient, and the technology has improved exponentially since then. They have treated 7 osteopetrosis patients total--as opposed to thousands of leukemia patients. And, remember, SCCA is the place to go for tip top transplant services--the man himself who invented the procedure is based there.

Did I mention Zoe has an extremely rare disorder?

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This post has been a rambling, disjointed one. I am going off of memory as opposed to notes. There was a woman there jotting stuff down for us (provided by Seattle Children's), but I don't know when she'll be emailing me her notes. I'll likely tweak this entry when I do--so, if you're a stickler for facts, check back in a few days for the corrections.