Date of Birth: October 17, 2002

Emma was born with a rare, fatal, genetic disorder called, Fanconi anemia (FA). FA causes aplastic anemia (bone marrow failure) and many different cancers. Emma will most likely need a bone marrow transplant in order to survive. Even after a successful transplant, she will not be cured of FA. She will continue to be at an incredibly high risk of cancer. Most children die in childhood.

Right now our biggest concern is Emma’s platelets. Since birth they have been dropping over 100,000 a year and if they continue to do so, she will be in critical ranges in about a year and a half (down to 20,000 or below). But, anything can happen. Her platelet count may go back up or level out and hold at a certain level for years…we hope and pray that it will.

Emma has her blood checked every three months to check for anemia and cancer. She also has a bone marrow biopsy once a year that checks for early signs of leukemia, other cancers, anemia, bone marrow cellularity, chromosome changes, abnormal cells…and probably several other things. Emma’s last results showed that she was doing relatively okay. Her cellularity was rather low (30% when it was 70% nine months before – normal would be in the 90’s) and she had a few megaloblastic cells, but there was nothing immediately serious to take care of.

Throughout her short little life, Emma has endured many things. She had open-heart surgery when she was only a few days old to correct a major heart defect (TAPVR). She also has conjoined kidneys that are on her right side. She has no thumbs on either hand (HUGE sign of FA). Her right ear canal is closed and her left ear canal is very small, which causes hearing loss. She wears bone conduction hearing aids on a headband that help her hear. She has submucous cleft palate, which makes it a challenge for her to speak. She is also very small. All of her birth anomalies are caused from FA – but you’d never know anything was different with her other than a special feeling you get when you’re around her. She’s such a happy, precious, intelligent, caring, loving, wonderful little girl. She brightens our days and has changed our lives forever. We love her more than we knew was possible to love someone. She’s our sweet angel girl…and we thank God everyday she is with us.

June 3rd, 2006

My little sister just had her baby!! Congratulations to her! His name is Elliot. He was 7lbs 2oz. She was induced at 38 weeks due to pre eclampsia. The baby finally made an entrance after a long labor, and he ended up with respiratory issues and is on a ventilator and will be for a little while yet. It looks like he might have to stay in the hospital for a couple weeks. He looks great in his pictures! They aren't able to hold him at all. That has to one of the hardest parts with stuff like that.
This past week we were able to go up to Wichita, KS to visit my grandparents. One of my sisters that I haven't seen since I was pregnant with Emma was also visiting at the same time in Wichita. It was really fun to get to see her and her family. It was all a very fast visit, but it was lots of fun. I hadn't ever met her youngest, so it was fun to see him. Time goes by a lot faster once your older (and I'm sure it only gets worse).
My Auntie Inga (some of you will remember the weird freakish girl that came with us to Camp Sunshine last year...that is my aunt...the one younger than me), had a beautiful baby boy, Ian!! Hopefully I'll get some pictures of him posted on the site. Emma loved holding him. Inga lives in Wichita, so it was fun to get to see her and the baby.
I had a baby appt and got to meet the dr a couple weeks ago. She was pretty nice. We mostly talked about FA and still have some clarifying that needs to be done about it. She was nice but I still have some questions to ask about the way she does things. We'll get to ask those next time. I'm about 15.5 weeks along now and (cross fingers) I think I am over morning sickness. I haven't hardly felt nauseous at all. It is so nice! We have a level three ultrasound scheduled for June 26th. That is all the testing we will do for FA - we aren't going to do an amnio or any other type of testing. It's not going to change anything we do anyway.
Emma finally said 'baby' out of her mouth and not out of her nose today!!! That is a huge first for her. She's finally figuring out how to make her 'e' sounds come out of her mouth and not her nose (cleft issues still).
Please remember little Nina who just had brain surgery. Things are going well, but they could still use a lot of thoughts and prayers their way. Also, remember all the other families going through difficult times.
Love, Teresa