Wednesday, August 6, 2014

"I Got A Boo Boo On My Chest"

The road to recovery will be a long one but we are determined to get there one day. Someday,
someday, I will look back and say "we did it". Yesterday was just another step in the right direction.

We arrived early for the first MRI of the day. We are watching her tumor behind her eye to see what it did after the surgery, depending on how it responded it could be nicer or more aggressive chemotherapy. We were also checking for more tumors down her spine. Of course the MRI machine decided to sleep in so we waited for about two and a half hours. Thank God for Auntie Amber! She helped keep both Emma and Cora entertained for the wait. While she was in the test we traveled over to the OR to do Emma's check in paperwork so she could seamlessly travel from the MRI to the OR with out coming out of her anesthesia.

The surgery went well with out any complications. The doctor placed her port slightly lower then most doctors so her scar is lower and the tube has more room just in case she gets an infection in the tube and it needs to be replaced. As a mother I am glad that the port is lower so it does not rub on tank top straps, I was worried that she would complain about discomfort with rubbing and it has been over 100 degrees in our town this summer. Also I am glad that her scar is lower so it is easy to cover later if she does not want to explain to people. She did a great job. She came out of surgery much less tramatized then last time. I think it was a combination of it being her second surgery this summer so she knows what to expect, we talked a lot about it and had the chemo port doll for a week, and this was a less invasive surgery. So far she is doing well with her recovery. As I write this she is sitting on the couch watching a movie and applying her boo boo oils to herself. She is doing well but so far my
issue is keeping her perfectly healthy sisters away from her, she just wants to cuddle and be left alone but try telling that to your twin and younger sister! They keep pestering her, poor kid.

We were unable to start chemo yesterday because we do not have the second and third diagnosis opinons from Boston and UCSF yet. We are unwilling to begin treatment until we know exactly what we are dealing with, no matter what it is cancer but we want to know specifically what type. So far UC Irvine and Boston have very conflicting theories which does not sit well with us. Hopefully UCSF can provide some insight.

So that is where we stand, chemo port is in place and this week we will lay low and heal. Next week we will begin chemo and pray that is all goes better then we expect. Thank you for all your love and prayers over the last couple days. We greatly appreciate everything. All the lovely busy activities you gave to the girls, soft blankets, hats, robes, freezer is all amazing!! If I can just make one teeny PSA, we are now in a constant battle of infection. Yesterday our world completely changed. Please, please stay away from us if you are sick or even if you have been around someone who has been sick. Even if you are trying to help us with something, please do not bring any known germs. Also, loved ones who live near us: please do not touch Emma. She is very prone to infections now and any temperature over 101 we have been instructed to bring her straight back to oncology. We can't even go to the ER unless it is a breathing or heart issue because the risk of coming out with something worse is very high. Lastly, please do not touch the rest us with your hands. No shaking hands unless you sanitize right before (and we can see you do it). If you are healthy we fully welcome hugs! Ironically those are much more hygienic! I know it will be hard for all of us but we have to protect Emma. If any of you are wondering why we homeschool all the girls it might make more sense to you now. We will be trying to kindly remind each of you so if we with hold a hand shake or ask you not to touch Emma please do not be offended.

I have a fun project I am working on with Emma, a small hint is it involves pretty dresses and inspiring other childhood cancer girls. More details to come!!

1 comment:

  1. Anya,
    Hello! My name is Andrea Liles, and I work at KABC in Los Angeles. I'm the one that met (your mom?) at the fundraiser car wash a couple of weeks ago. I know you have "spoken" to my co-worker Julia with regards to telling Emma's story. I just wanted to introduce myself, and let you know that all of you are in my prayers, that I intend to follow this story through to its happy ending! My hope is that I will have the opportunity to meet you all one day. My personal email is if you should have any questions. Thank you for your time ��


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