Thursday, August 20, 2009

An Update On Emma's Leg

When Emma was 8 months old the doctors discovered that there was something wrong with the bone in her lower left leg. At first they had no idea what is was and they ran a zillion tests on her. (okay, maybe I am exaggerating just a little bit--but it's not by much)


They had her admitted to the hospital that afternoon and she stayed in the hospital for 8 days. Keep in mind that we had Mia also who was only 19 months old, and she didn't understand why mommy, daddy, and Emma were never around. Thank goodness that she was able to stay at Mammy and Grandpa's while we were at the hospital. Erik would go to work while I was at the hospital with Emma, he would come to the hospital to see us, and then one of us would go pick up Mia take her home to sleep, and then drop her off in the morning, and the cycle would start all over again!

They wanted to keep her in the hospital longer but we were just waiting for test results and she was getting sick being around all the sick kids in the hospital and I had Mia to take care of, so I convinced the doctors to let us go home and that we would come back for whatever else they needed.

While she was in the hospital she had her first bone biopsy. Her biopsy was performed by the best orthopedic doctor at Loma Linda, Dr. Shook. The reason we got him to perform the biopsy was because he was the doctor on call the day she needed her biopsy done.

Anyway, they finally figured out that it was Melanoticneoectodermal tumor of infancy. (Don't mind my spelling of it, just sound it out phonetically! And I'm sure there's suppose to be spaces or hyphens in it as well. Erik knew how to spell it correctly, I don't think I ever knew how to spell it.)

They then did a second biopsy within two months to double check and make sure they were correct in the diagnosis. They were. But because of having the biopsies done so close together she had to have her leg in a cast, just when she was starting to stand and take her first few steps. Melanoticneoectodermal tumor of infancy is a very rare bone disease that has only been seen in a handful of cases, and she was the first to ever have it in the lower leg. It is usually a fast growing tumor that if not operated on immediately and the whole bone removed ends up killing the child by squishing major organs.

Their recommendation to us was amputate her leg. Stop it before it could spread. They sent us to UCLA and allover for 2nd and 3rd opinions. Contacted the Mayo clinic, everything. So, we said okay if this will save her life go ahead and amputate her leg.

Many prayers and much fasting was offered up on this sweet little baby girl's behalf. Her name was on so many temple prayer rolls. Through one of the many Priesthood blessings that she received during this time she was told that she would be able to have full use of both her legs. Talk about WOW!

We went to her doctor's appointment when we were suppose to set up the date for the amputation the doctor surprised us by saying that there was another option. Which was to wait and keep a very close eye on her and here leg. We had to go back weekly, then every other week, then once a month, then every two months, then every four months, then every six months. Until finally we are on yearly visits. The bone has started to self-correct itself, if I remember correctly the technical term is "reorganizing itself."

Well, we just had our yearly visit and all is looking well, it is looking better and better each time we go. Her first x-rays looked as if her bone had been wrapped in gauze and a dog had chewed on it. This last x-ray shows the bone almost completely smooth! Both legs are growing at pretty much the same pace, they both have the same basic bone mass and muscle mass, she doesn't limp or favor her leg, and there is no pain whatsoever!

The doctors are amazed and call her the girl with the miracle leg. They want to write up a paper or two documenting her case so hopefully in the future it will help other families with children with the same thing. UCLA wants to do tests on her original 2 biopsies and see if they can discover something that will help others.

But best of all, she still has both her legs!!!! Now I just have to keep in mind whenever she's running all over the place, climbing and getting into everything that I prayed for her to keep her leg.
We know that it is through the faith, prayers, and priesthood blessings that she is a healthy almost 7 year old girl running around on both legs today! Thank you to everyone who was there for us during that trying time!
Emma's leg today with her scars from the biopsies.
The following pages are from her baby book!


4 comments:

Lizeth said...

We are so happy that Emma's leg is doing so well. She is such a happy and sweet little girl. We love her.

Barbara said...

Marci, that is an incredible summary of a very traumatic time in Emma's life. Thank you for doing that for us. We love that girl with the miracle leg--and the rest of her family!

Monty and Kristin said...

That is super great news!! I'm so excited that she's doing so well. I can't believe she's 7! I remember when all that was happening...wow, such a huge blessing to the family. Glad all is looking good. Keep it up Emma's leg!:)

Michelle said...

It seems so long ago at times and then just like yesterday at others. I'm so glad that everything worked out for the better and that she is doing so well. We sure love her!!