Macy

Macy

Monday, May 21, 2012

Carrier testing results

We received the results today after they tested Adam's blood sample.  The one mutation they found when they sequenced Macy's FANC-A gene did not come from him.  The results were negative.  So that means the known mutation came from me, and the one they couldn't find yet came from him.  Even though by default we know since his test was negative that it came from me; we still have to confirm it in the lab.  So they started testing my blood and should have the results June 4th.  


So we finally have what we need to start, and I tentatively scheduled our consult appointment with the PGD center for the 5th of June.  It takes anywhere from 4-10 weeks to build a test specific to a family for PGD and you cannot start your IVF meds until the test is set up and ready to go.  Therefore, after our consult in June I will call our IVF clinic and reserve the month of September to be our egg retrieval month.  


So this is basically a summary what the steps are:


1 PGD consult (send them reports of all our genetic testing along with blood samples so they can start building our test)


2 Reserve IVF month (September)


3 Do some of the required IVF pre-testing in June (blood tests, and a sonohystagram (sp?) for me, and a sample analysis for Adam


4 Meet with IVF clinic in the end of July to get started


5 Start IVF meds (daily stomach shots)


6 August/September = lots of ultrasounds to make sure the follicles are growing and maturing but not too fast or slowly; and adjusting med dosages accordingly if needed  Along with blood tests.


7 September = egg retrieval if all goes according to plan.  Fertilization of embryos, biopsies of embryos, and implanting those that are FA free and an HLA match for Macy (hopefully we have some---statistics are 18% chance per embryo so if we have 15 good embryos; 2 or 3 will meet criteria if we are lucky).  Start daily booty shots (big, long needle....ouch!)


8 10-12 days after embryo transfer I find out I'm pregnant with twins or triplets!!  YEAH!!!!!!!  just kidding.  Twins would be nice though!  :)  But a singlet would be a miracle in itself!  


Especially since there is a whole lot that can go wrong in between step 6 and 8 that would cancel your cycle to where you have to start over...and of course, just because you transfer an embryo doesn't mean your gonna get pregnant.  


However, I have decided we are going to get pregnant on the first try.  That's just the way it gonna be.  cause I said so!  hahaha.  okay, better finish this post I'm getting a little crazy now.  


Wish us luck!  :)


take care,
Jenn

Friday, May 18, 2012

Support Fanconi Anemia Research!




Please take a moment to watch this video by clicking on the link below to see who your $2.00 donation is helping! The faces of the children like Macy who are fighting this disease, and those we remember that have lost their battle. I can't think of a better way to honor these children than to find a cure. If you haven't donated please consider it. If you don't feel comfortable donating online at www.fanconi.org/index.php/donate then please send me a comment or message, and I will happily send you a stamped envelope addressed to FARF that you can put your donation in, and pop in the mail.  Please feel free to make your donation "In honor of: Macy Stewart"   Thank you!


                  https://vimeo.com/42341108



Thank you!  Your donations mean so much to us and the entire FAmily!  We appreciate it more than you know!  Take care,
Jenn

Friday, May 4, 2012

1 year today

1 year ago today marks the day that changed our lives forever.  Macy was diagnosed with Fanconi Anemia (causes bone marrow failure usually before the age of 10, and many types of cancer including Leukemia at a young age) and we were devastated.  In the last year we have grieved our old life, and taken on a new life.  Through wonderful Doctors and organizations like the Fanconi Anemia Research Fund we have hope a cure will be found.

There is amazing research going on not only for FA but also cancer research through the FA community.  May 1st was International Fanconi Anemia Day.  The month of May has turned into a month of great effort to raise as much money for FA and cancer research as possible.  

Too many children have been taken from their families much too early because of this disease, and this will continue until we have a cure.

The FA community is trying to raise $2 million dollars this May by trying to have 1 MILLION PEOPLE DONATE JUST $2.00!  If you have ever wanted to make a difference in a child or family's life now is the time.  If you have ever love or lost someone affected by cancer; your donation will help further cancer research as well.  Some of the best cancer research going on including breast cancer research is being done with the help of FA researchers.

Please share this with as many people as you know so we can reach our 1 million people!  All we ask is for $2.00!  That is not even the price of a cup of coffee at most places.  

You can donate directly through the Fanconi Anemia Research Funds web page at this link


Please note you do NOT need a paypal account to donate.  It is just the company making the transaction.  There is also a place you can put "In honor of: Macy Stewart" if you would like.  You will be emailed a receipt for your taxes as well.  

You can also send cash/check directly to the 
Fanconi Anemia Research Fund
1801 Willamette Street, Suite 200
Eugene, OR 97401

I can't express enough our thanks for your donation!  Your donation could be the one to save Macy's life!
take care,
Jenn

Tuesday, May 1, 2012

You never know what tomorrow brings

What a huge relief...I can't even begin to explain the relief. I have spoken to a few people since yesterday. We have good news! After speaking to the place that does the PGD testing we CAN move forward without knowing the second mutation. They can fingerprint Macy's DNA to the parent's DNA that the unknown mutation is from. And they can go by the markers on the DNA! We still need to do Adam and I's carrier testing so we know who the known mutation is from and who the unknown one is from. But that shouldn't take too long. Then we can START!!!! Thank you everyone for thinking of Macy and praying for her because it worked! You never know what tomorrow will bring! Take care Jenn