Thursday, November 10, 2011

What would you do in our position? The Denver staff weighs in

After E.'s karyotype came back and we learned we couldn't use her as our egg donor, I spent a long time on the phone with the genetic counselor in Denver.

We talked about the different paths in front of Will and me, potential frontrunner options being: transfer some of our normal embryos back into me since I'm on depot lupron and prepping for a transfer anyway, find a new egg donor - such as potentially my sister, or go straight to a gestational carrier.

The counselor and I mused about what a great story it would be to transfer our own embryos after this donor fell through and have at least one healthy child from the five embryos. That it would feel like it was "meant to be" that the donor fell through (a concept I don't so much believe in usually). It would be a really lovely ending to a harrowing four-and-a-half year story. Because those embryos are so precious and are basically irreplaceable, I thought of maybe putting in a couple of the more wonky ones, in particular, one or two of the day 7 blasts.

At some point in our conversation, I told the genetic counselor that she is one of the few people who truly understands the medical complications of our situation - my cancer history, the reality of having five frozen chromosomally normal embryos that may or may not be able to make a living child, and whether or not that would need to happen in someone else's body or not. I asked her, since she understands the nuances of our history, what she thought she might do next if she were in our shoes.

She said she didn't know. She also said she thought it was a really good question.

She said what she wanted to do was write up a one-page summary of our history, embryology reports from our blasts, and the options before us, and she was going to convene a meeting with the head of genetics (who also has a PhD in embryology) and Dr. Schoolie himself and let them talk about what they recommend, how they see the situation, etc.

I was so, so moved by this, nearly brought to tears. It's things like this that make me feel the Denver clinic truly has our backs. Our situation still stinks, but it is helpful to know this.

So they met, and then they got in touch. Everyone agreed that we face a tough situation with no obvious answer.

Forced to give an opinion, the head of genetics said she didn't know what to recommend, but felt strongly that if we wanted to transfer our normals, we should transfer the best two or three. Problem is, there are only really two good ones, the rest are not so hot. So it seems terrifying to risk them in my body when we don't know if I can carry a baby to term.

Dr. Schoolie said what I thought he would say (and what my rational side had already told me): nothing about our situation had changed. He thought Will and my idea of trying an egg donor was a very, very good one, one that could scientifically answer the question of whether I can carry a baby or not. Given this, we should just gather ourselves emotionally, pick a proven donor from their in-house pool, and run this experiment asap. (No problem!!)  Sounds good from a scientific perspective but misses entirely the fact that it is not so easy for us to find a donor we feel comfortable with. God help us, but we're skittish about this; it took months of searching through multiple agencies to find E. And...well, we know how that turned out. The sister donor idea, he said, was also not a bad one, assuming she is fertile enough and that it makes sense for us and our family psychologically.

Bottom line, there were no clear cut answers, but it was really great to hear their thoughts. Even more than this, though, it just meant so much to Will and me that they took the time to discuss our case and weigh in on it. This is one of those reasons why it would be very, very hard to leave the Denver clinic. They get that we are a tough case with potentially multiple reasons why conception and carrying has been such a struggle. Their medical care is excellent. And then on top of that, they really want us to succeed.

I'm not sure there is much more I could ask for from a clinic. (Unless maybe they could relocate to NYC. Now that would be pretty cool.)


p.s. My sister has passed the paper and phone screen...we are trying to get some of her bloodwork drawn locally as soon as possible and then get her in for a one-day-work-up. Fingers crossed.

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  1. It is such a tough, complex position. I, too, agree that moving forward with finding an egg donor is a prudent path, however, I'm not sure it exists mutually exclusively from using your best embryos. I so want for them to be given a chance at life. I'm not sure if you discussed this in a prior post, but is your sister a possible surrogate (I know she is single, etc., but thought it was worth asking)?

    Sometimes the question is best posed in terms of what you will regret more? If the donor selection process is protracted and ultimately unsuccessful, will you wish you'd used your normal embryos first? The good news is that those embryos are frozen in time, so, while getting to live, take home baby is the goal, those embryos will always be as viable as they are, no matter when you decide to use them.

    As for using your sister as a donor, I completely see the psychological complexities that bear down on both you and her, but I think the story you tell your child/ren would be straight forward and lovely and no more complicated (and perhaps less) than if they'd been conceived through donated embryos, etc.

  2. I am glad they are so invested in your success. I am also glad you're not going to clinic-hop. Honestly, other than the obvious nightmare that is traveling, I think it's better to stay with a clinic you know & trust. They've done right by you, and they have your best interests at heart.

    Hoping that things become more clear for you, and that you find a solution that works for your whole family.

    Thinking of you all.

  3. I agree with Susan, I'm glad you are sticking it out with Denver. I do think they are invested in your care, and want what is best for you. And I appreciate their honesty, that they have differing opinions, and are willing to be transparent with you about that. Signs of good care, to me.

    It is not an easy choice (there's an understatement!), so I won't offer my assvice, other than to say I hope nothing but the best for you.

  4. Gosh this is tough. I wouldn't even dream of putting forth any perspective on this. I'm just glad that you feel you're getting taken care of at C.CRM and that they get what you're going through. I love that they are taking extra effort with you - you need/deserve it. I hope that you are able to come to some sort of decision soon, and more importantly, that whatever path you go down WORKS.

    Keep us posted, am thinking of you...

  5. Intending no offense, and recognizing that I'm looking at a written second-hand communication that may not accurately convey all the details of your conversation, the idea that you and Will should "gather [y]ourselves emotionally, pick a proven donor from their in-house pool, and run this experiment asap" leaves me feeling very uncomfortable; if successful, the experiment will bring you a child. I know you're painfully aware of this (far more than I am) but just because something could work (and has produced wonderful results for others) doesn't make it the right path for any given individual/couple (something I struggled to get my own RE, who advocated that I move to DE, to understand).

    That said, I know you guys are putting lots of thought into this process and are hardly likely to rush headlong into some poorly considered plan, so please don't take that as a criticism of you, just a concern about that sort of thinking/language when it shows up in the heads (and practices) of REs -- which, regardless of whether it's actually applicable in this case or not, I do think happens.

  6. Sorry they didn't have a more clear cut answer for you but it speaks volumes that they even bothered to have the meeting. Good luck.

  7. I think it's wonderful that so many people are working on your situation- it really seems like you are more than just a patient. I hope we find that too!

  8. It's probably 'cause I'm hyper-rational and all-but-lacking in any recognizable human emotions, but what your RE said is exactly the kind of thing that I would have thought (though perhaps not said).

    Which doesn't mean it's right. In fact, very much au contraire.

  9. I first discovered your blog yesterday and left a comment. With this post I went back and read your cancer story and IVF history.

    I think we are about the same age (I'm 39) and we both had cancer. Let me tell you quickly mine and share with you what I would do - essentially what I did do in similar shoes.

    At age 33 I found a lump in my right breast. No one thought it would be malignant but I had a bad feeling about it. The first 3 docs told me to come back in 6 mos. The 4th doc, a general surgeon, finally agreed to biopsy it. After the excisional biopsy he told me the tumor looked fine (it was round and smooth vs. jagged and rough) and he expected pathology to tell me it was benign. The next day, in shock, he called me to tell me that not only was it cancerous but it was extremely aggressive. Had I waited the 6 mos everyone was telling me to, I would be in a very different boat.

    Anyhow, I had a double mastectomy (plus several reconstruction surgeries) and did 8 rounds of infusions (Adriamycin, Cytoxan, Taxol, Taxotere and Gemzar). The side effects were awful. Losing my hair wasn’t such a big deal but I got pretty severe bone pains and neuropathy and was in a wheelchair because it hurt too much to walk. I lost my period and went into premature menopause for a good 3 years. Then I started to get periods about 2-4 times per year. CCRM tested me and my fertility was wiped out. No eggs to speak of and super high FSH.

    We went straight to donor eggs. I had no idea what the chemo had done to many of my organs, particularly my uterus. I know my heart had suffered a bit and I still have some neuropathy. Otherwise I was pretty healthy. We got a donor through an agency and CCRM did the rest. We transferred 2 5-day blasts and both stuck! I was very impressed with my uterus! I’m now 24w with twins.

    Now, you were on totally different meds. You’ve had implantation occur but can’t find heartbeats (is this an egg quality issue? I know they’re chromosomally normal embryos but older eggs do pose their own issues). My hunch (and I’m not a medical professional) is that you CAN carry a baby, especially from a young donor (mine was 22).

    Since your body is ready for a transfer anyway, I would transfer your best blasts. You’ll know soon what your result is. Simultaneously, you can pursue an anonymous donor or your sister as a donor. Assuming you are healthy, I would try to carry your embryos or DE embryos first. If those don’t work then you’ll have more info to determine whether you need a gestational surrogate. But right now, I don’t think you have enough data to assume you can’t carry. Aside from cost savings, carrying your own baby is so precious. An experience you’ll treasure forever whether they are from your own eggs or not.

    Anyway, you can totally disregard what I’ve just said. Regardless, you have a community of people who will support you and want you to succeed! Take care!

  10. Denver's looking out for you, that's for sure. I hope all the screening with your sister continues to go well. And I desperately hope that 2012 is your year of the Take Home Baby!

  11. After trying to wade through decisions about donor sperm, PGD, and adoption what I quickly learned is that everyone has their own version of what is right for them and what you thought that might be has no bearing on what you feel when you are actually faced with making the choice. That being said I think I would give the healthy embryos a chance. Whether you use them or use a donor you will be transferring to your body and so will run the same risks of what your body can do. I know these are precious irreplaceable embryos but if the embryo from a donor is successful then you will have that added psychological maze to navigate plus have to decide what to do with the embryos. If a subsequent transfer of your embryos to you or a surrogate results in a bring home baby then you have a whole extra layer of each child having different biological circumstances. If things don't work out with your embryos you will still have the option of donor eggs. I do not envy the decisions you face. Regardless of the choice you make as long as it feels authentic to you it will work out. With much empathy and well wishes,

  12. Hmm, It was interesting to read Michelle's response. Sometimes it's easier to decide when a door is shut. And you've got alot of open doors! I think you are smart to stick with CCRM and I pray that you find a donor in their pool that is acceptable or your sister passes their tests. I know all these decisions must be keeping you up at night. If you were successful with an egg donor, would you try to have another child with your own embryos later?

  13. TurtleMama, yes, we would, definitely.

  14. I love the compassion and "heart" that CCRM are showing with your "case".

    I said to a friend yesterday who was telling me about her friend's infertility to please just get to our clinic. Yes, they are the most expensive in SA but they are the best - they're compassionate and you feel like they actually do care.

    And that's what I get from your post - it does speak volumes that they get what this is doing and that they're invested in your outcome.

    PS thanks for your lovely words on my post yesterday :)

  15. From your posts, I understand how much it means to you to have a genetically-related child. (It was very important to my husband and I too.)

    Therefore, if I were in your shoes, I'd pursue that fully first. Meaning, using your sister's eggs or a gestational carrier with your best embryos. Foregoing a pregnancy, although a huge loss in itself, seems like a "lesser" loss than not having children, or not having children who are genetically related to both you and Will.

    Wishing you much strength and peace with these incredibly complex decisions. I also just want to say how much I admire families that are built using donor eggs, sperm or embryos, and families who are able to adopt.

    By no means am I trying to say that a genetically child is any way superior, I am simply understanding from your posts that it is very important to you and Will.

    Even though you're ready for a transfer, using embryos that do not meet YOUR criteria seems like it wouldn't ultimately meet your goal fully. You'd still want to have yet another child or children using your embryos or your sister's eggs, right?

    Hang in there, Mo. I'm sure the path will become clear to you. Regardless of anyone's opinion, go with what feels right.

  16. It really does sound like an awesome clinic that has a staff that genuinely cares. I think that itself is worth it's weight in gold.

    I so wish I had answers or recommendations, but never having been through this I can't even being to imagine where to start. So, I will just keep cheering you along and saying lots of prayers. It breaks my heart all ya'll have been through and I will be the one on my front porch shouting for joy when you finally hold that sweet baby in your arms (because I have no doubt that you will). <3

  17. mo,
    i feel i have to tell you- whatever direction you choose, when you hold your child in your arms for the first time, all of these monumental concerns will melt away. it won't matter at all if s/he came from your egg, your sister', or the perfect (or not so perfect...) donor. it won't matter if you carried a pregnancy, or used a surrogate. however your child comes to you-none of those things will mean as much as they do to you now. the mountains of worry, and waiting, and wondering if you are doing the right thing, will crumble like dust in the face of your child.

    you are smart, you are sensitive, and it is not easy at all, but you are doing all the right things to get to that moment.

    it isn't fair that you have had to have such significant losses along the way, but that does not mean that you are doomed to fail. i have come thru to the other side (and seen those mountains crumble...), but it has not been without tremendous, harrowing, multiple losses. i don't ever think i will know why it had to be that way, or why it is this way for you and will also, but i am standing by your side, thinking of you always, watching you come closer and closer to your eventual parenthood.

  18. Just wanted to say, as someone w/o the sororal donor option, what a wonderful choice it sounds like, and that I am glad that you can at least consider that as one of your paths. I am currently in the midst of an IVF cycle with an anonymous donor, and though I selected her from thousands, and think she is a great match on paper, there are so many uncertainties that I know would be answered, for me and my husband, as well as a future child, if we actually knew this person.

    Thank you so much for your intelligent, honest blog. I wish you and Will only good things in your journey to becoming parents.


  19. Saw this article and thought of you:

  20. I am very sorry for the huge disappointment you've had to face recently. Disappointment on top of years of grief is like a kilo of salt in a wound. I'm really sorry that this lovely potential donor could not fulfill her intentions to be your egg donor.
    I am very glad to read that you are getting such excellent care at the Denver clinic. You and your husband are clearly experts in terms of fertility treatments, but also very educated and it would not work to have medical professionals placate you with half-baked answers to your questions. You need their expertise to guide your decisions, and it sounds like this is what you received.
    I wish you well as you and your husband make these decisions for what the next step will be.


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