Monday, June 30, 2014

Paving The Way For Progress

Emma had her follow up appointment today and it went quite well. She is healing nicely and we got the clearance to take her back home so tomorrow we have a six hour drive back!

Her surgery went so well that the university asked for our permission to use the video in a book!
Holding her healing oils
Emma's surgery will be published as a good alternative for a Neurofibromatosis optic nerve glioma. It is our prayer that Emma helped pave the way to bring healing and hope to other children fighting NF1. The study will also be forwarded to The Children's Tumor Foundation to add to their research on NF1 treatments. The surgery was such a hard choice but I believe we made the best decision for Emma and it looks like some good research will come as a result.

The next steps are to allow her a four months for healing. In July we will go to the Genetics Specialist for a check up and to update the doctor on the surgery.  At the end of September Emma will go for another MRI to see what the tumor did after surgery then we will come back down here for a follow up with the Herbert Eye Institute. At that time Emma will be fitted for glasses to protect her eye sight in her good eye by preventing strain and to add prisms to her blind eye to help keep the eye straight. We are hoping that if we can get her blind eye muscles to tighten and get used to bring straight it will prevent her blind eye from constantly turning in a different direction from her seeing eye. I'm sure our little fashionista will be excited for a new accessory!

Grandma helped us at today's appt.
Some of you already know that the day after Emma's surgery her father was hospitalized as well. We had an unexpected ER trip for a bad case of pneumonia. He is recovering well now, thank you to everyone who prayed for Brad during this trying time. He has his own tests and follow ups with doctors when we return.

So for now, other then our Genetics appointment, we get four months off to heal and begin preschool.

Wednesday, June 25, 2014

Photo Story

The surgery went well today. We were up at 4am and spent about five hours in the hospital. The surgery itself went fast. The less invasive technique worked so that shortened the surgery time and made the whole process easier. 

The surgeon was able to remove a 2cm chuck of her tumor from behind her eye. Hopefully this will relieve some pressure and help her eye to sit in the socket. The tissue is being tested to determine if it is cancer, we should know in a few days. 

I was able to scrub up and be in the operating room while she was put under. I'll never forget the look she gave me. It still brings me to tears. Emma, I'm so sorry I couldn't help you to fully understand. I hope you have no memories of this as an adult. 

Emma is recovering well. Her eye is red, bloody and swollen and she has nine self dissolving stitches. As I write this I'm rocking her gently as she sleeps trying to forget the traumatic events of the morning. 

It went as well as it could have and yet I find myself emotionally spent and ready to cry until the tears are gone. The doctor said she will recover quickly, I hope my nerves mend just as fast. 

Thank you to everyone who prayed for us today. And thank you to the UCI staff, you were amazing and very supportive. We could feel all your support!

Monday, June 16, 2014

A Call For Prayer

Emma's surgery is coming up in about a week. I thought I'd post about her picture book again. I'm making her a book with pictures and prayers from loved ones to read before and after her surgery. If anyone wants to contribute you can post in the comments here or email them to me at

I made a pray for Emma image that I posted below. Please share it, we need as much prayer as possible! On the surgery date I am going to post a picture story so I can quickly add to my post through out the day.

Monday, June 9, 2014

Picture Prayers

Exam while holding her Balance oils!
We did not have surgery today. It turns out that we have to do a few exams and sign offs first, along with a preOP, a postOP and a possible set of hospital recovery days. Originally we planned to do surgery today but the doctors office said we couldn't do it on this trip. So today was a surgery consult.

Emma will go back to UC Irvine on June 25th for her surgery. The goal is to debulk her tumor and
After doctor visit cuddles
biopsy the mass to make sure it is not cancer. Hopefully the pressure relief will help her eye to go back into the socket more to lesson her facial deformity.

We did learn today that her tumor is still growing toward the orbital chiasm, if it crosses over she will go completely blind. Right now she is only blind in her right eye. There is nothing we can do to prevent this from happening but pray. Chemo cannot prevent it from happening and the surgery cannot stop it without getting very invasive and dangerous Please pray that Emma's tumor will stop growing.

So the plan is to return home tomorrow and have a "normal" two weeks then drive back down for surgery. I'm making a picture book for Emma of all her friends and family who are praying for her, if you feel so led please send us a picture of you and include any notes you want me to read to her. I will fix it to pages, laminate it and let her read it over the surgery journey.

Thursday, June 5, 2014

Hold My Hand

The results are in and it's not good. I do not have many details yet but Emma will be having surgery this Monday. The tumor grew another 1.3mm making the overall growth since December 3.1mm. Time to do something.

Up till now I've put on brave face, crying at MRIs but holding it together the rest of the time. Now I'm not so sure. I'm frightened.

I will update when I know more and I hear from her doctor on the plan for next week. I know its a quick post but many of you are lovingly asking what happened at her MRI on Friday so I wanted to inform everyone at once. For now please just pray for us.

Monday, June 2, 2014

The Times, They Are A Changing...

One would think that repetition makes it easier but that is not the case. Each MRI we do I panic thinking "this will be the time there is complications, we are pushing our luck". Thankfully the trip
went smoothly. I had Emma's amazing Auntie / Godmother with us so her presence certainly helped. However, no amount of preparation or repetition can stop the waterworks that occur when I have to leave Emma in the MRI room.

We don't have the results yet. The neurologist that read the results for us last time told us there was no growth and later we discovered there was growth so I was not about to go back to that office. So we wait for the official report which should be here in the next day or two.

Emma's MRI was not the only event last week, we moved homes and Emma's auction took place. That auction surprised everyone by bringing in $1,000! I am so thankful
for all the donations and bids. That truly made us feel supported and loved.

Our next adventure is a drive down to UC Irvine to Dr. Tao. Depending on her MRI results it will either be a surgery consult or the actual surgery. We will know more when the MRI reading arrives.

We also had a mandatory insurance change in providers this week. I'm not sure yet what this will mean for billing and if Emma's current medical team will accept her new insurance, please pray for us as I sort out that mess. Right now I'm still hoping it will be a good thing.

I will update everyone when we have the results. For now we are off to play with Grandma and Grandpa for a few days.