12/12/2008

Back in the chase...


As most of you know, we've been chasing that stork for our entire married life. We've never used any stork repellent or put out a sign that said "No Storks Allowed." Instead, we tried to attract it. We learned about the conditions that the stork likes and what would attract the stork. We learned about all the fertility signs and the most optimal time to entice the stork. We would even set out traps and hoped that we get lucky. Not once did the stork show up at our doorstep. After a while, it seemed like chasing the stork proved to be much more difficult than we first realized. So we enlisted the help of a local stork hunter. With his first attempt (IVF/ICSI/PGD-FISH), he shot me in the ovaries and I ended up hospitalized for 8 days (severe OHSS and almost lost both my ovaries). We realize that things happen that's not totally in our control but being the professional stork hunter that he claimed to be, he should've known better. However, we gave him the benefit of the doubt and gave him several other chances (3 FETs). After those failed attempts, we realized that the local stork hunter was more talk than results. He would keep stringing us along and taking our money (we're 100% out-of-pocket) until we finally realized that we had to hire another stork hunter...the best stork hunter in the United States. The best stork hunter came with a very steep price, but he has the reputation and stats to back that up. Even though there has been an empty trap (July's BFN) and unforeseen circumstances (the 7 CGH 'no result' blasts), we still have the utmost confidence that he has our best interest in mind and will do his best to catch our stork.

Before we made up our minds on what we're going to do with the 7 'no result' blasts, we spent the whole morning on the phone with a few people from CCRM. First, I spoke with John, our embryologist. Back in July, he did a re-biopsy on our blasts that were shipped to CCRM from the FL fertility clinic. Remember that he thawed the 5 frozen blasts... 3 died upon thaw (ugh, my FL RE used the old method of freezing) and 2 were re-biopsied for FISH analysis for the translocation...1 is normal and 1 is inconclusive. Both of them were vitrified and are still frozen in CCRM's lab. He told me that he personally will be doing a re-biopsy of these 7 'no result' blasts. Because the embryos were vitrified after the first trophectoderm biopsy and will be re-vitrified after the re-biopsy, he reassured me that the risk of damage to the embryos will remain at 1%. Apparently, vitrification makes a lot of difference (in addition to the skill of the embryologist). I asked him if he will re-grade the embryos after the biopsy, and he told me that the grade they were already assigned is pretty much the grade that they are even after another biopsy. He said that if we agree to have them re-biopsied, he will do the re-biopsy sometime next week and will call me afterward to let me know how things went. And we will have the results of the FISH analysis before Christmas.

Next, I spoke with our genetics counselor. She said that she doesn't have a written copy of the CGH report, but that she was told there were indeed abnormalities with 13 & 15, which we expected and there were no trisomy 21 in the 8 abnormals. I was thinking that maybe I should get the aneuploidy screening, but since she said that there were no trisomy 21 I felt more at ease. She reiterated that babies with trisomy 13, 18, and 21 can go on to have a live birth, but babies with trisomy 13 and 18 will die within a couple of weeks after birth. Those with trisomy 14, 15, 16, 17, 22, and 18 will all miscarry. Also those with monosomies (except XO - Turner's Syndrome) of any of the chromosomes will miscarry.

I asked for clarification on what 'no result' means. She reiterated that it has nothing to do with our embryos. She explained that sometimes when they amplify the DNA there is not enough DNA to test. And sometimes there is some signal but that signal is weak so they are not confident one way or the other. Now, I'm starting to get the picture. Apparently, glitches happen. She said that they happen in 10 - 15% of the cases, but that our case was unusual in that it resulted in 45%.

Then I spoke with my nurse. Our nurse Jen has been great throughout all of this. She was really upset at the number of no results. She told me that when she heard about our CGH results, she immediately ran to our genetics counselor's office. Anyway... we talked about the FET cycle and when we could start preparing for that. As we are expecting the results from the FISH analysis before Christmas, we could do the FET as early as January. I asked about the differently FET protocols, so she briefly explained them: (1) BCP & Lupron shots, (2) Lupron shots only, and (3) patches only. I told her that my regular doctor, upon knowing the results of my hypercoag panel, is concerned about my being on BCP, so she said that I will probably want to do the Lupron only protocol. She emailed me a sample FET calendar (Lupron only), and I am supposed to call her with my next AF to discuss which protocol and the date I want to do the ET. We briefly discussed about the FET schedule for February. Before we hung up the phone, she told me that once they get the results, she will schedule a re-group appointment for us to discuss things with Dr. Schoolcraft.

After the phone calls, Jerry and I discussed our options and what they recommend. After much thought and consideration, we're going to take their advice and choose Door # 1...To just do the FISH analysis for the translocation. We signed the consent form and FAXed it to them and put a hard copy in the mail. Sometime next week, John will call us to let us know about the re-biopsies. And hopefully before Christmas, we will get the results of the FISH analysis.

So our chase continues for our ever-elusive stork...

8 comments:

Jill said...

Just wanted to wish you luck, Linda. Again, I'm so sorry for all of your confusing no results. I hope you get all answers with the FISH testing. You will be in my thoughts and prayers during this time. Wish things were different for you.

kayjay said...

Taylor,

What an agonizing decision for you both. I'm sorry this chase has been so long and that you are still travelling down this road but I will cross my fingers for you and the 7 frosties that will be tested using FISH. Well, on the bright side, the decision has been made and you can go forward on this decided pathway. I wish you tons of GL!

Nikki said...

I hope you get results on your 7 "no result" blasts, Linda. I am hopeful that if John does the biopsy himself, then he will get a good cell or two, with enough un-damaged DNA for the FISH to be performed on!

Sorry that you're going through all this - hang in there.

The pieces of good news are that the 8 abnormals didn't seem to have other chromosomes affected. Also the fact that you do have one normal embryo from your FL clinic vitrified at CCRM.

I hope things fall into place soon! Good luck!

ThereseAnn said...

Wishing you all the best...You and your babies will be lifted up in our prayer.
If faced with any sort of Trisomy, I am available for support.
Blessings,
ThereseAnn, mom to Natalia 8yrs, with full trisomy 13-she is the JOY in our day.
http://www.pray4natalia.com

mlg- believe N miracles said...

I am glad that you both have made a decision, I know it must have been difficult, but it is made. Now you can concentrate on the next cycle, it will happen, I will be thinking of you along the way.

Heavy heart said...

Hey Linda I really dont understand the technical details but I can feel the frustration from the ambiguous results..I really hope things improve for you..

I have tagged you..do it only if you think it will help you divert your attention for a while.

Hugs and prayers
Heavy heart

Telle said...

You and Jerry are amazing people. And if I could catcht that stork and send him to your house please know that I would!!!!!

Nikki said...

Linda - I nominated you for a blog award. Details are on my blog!