Thursday, September 29, 2011

Lemonade for Olivia!

There's a fantastic fundraiser in Washington this weekend so if you're in the area, please go and support!  Thanks to Tami for organizing this - good luck!

Wednesday, September 28, 2011

Update on today's surgery from Julie

Yesterday Liv, Nichelle, and I made the three and a half hour trek to Seattle to meet Olivia's oncologist, Dr. P, anticipating that we'd be at the hospital a couple of hours and then be free to go home. About a mile from the hospital my phone rang. I had Nichelle answer since I was focused on driving. Her side of the conversation went something like this:

Hello?.........Yes....Okay?.....Procedure?  What procedure?....Uh, we were told that would be in October.  We haven't seen the oncologist yet........Oh!......Okay....Okay.  Thank you!

She hung up and said," Um, apparently Olivia is having her eye removed tomorrow."  How had no one told us about this?  We had no idea this would be happening so soon. None.  We were completely unprepared and dumbfounded.  A fury of phone calls and emails to employers, teachers, friends, and family and an hour and half later, Brandon was on his way here to Seattle with everything we needed.

It has been a whirlwind.  Even though Brandon and I have been talking about this and doing our best to mentally prepare ourselves for the surgery, we didn't feel ready for it.  We had anticipated that we'd set a date for the procedure and a have a week or so to really mentally build up to it.  But no. 

My sister Katie reminded me that it would be like ripping a band-aid.  And rip it did.  And it hurt.  It still hurts. 

                        .                    .                    .                    .                   .                    .

This morning we made our way through dark streets of Seattle to the hospital.  We checked in and went through all the typical steps and procedures.  Brandon decided to take Liv back to the operating room this time to save me from the trauma of doing it a third time in less than week and a half.  She instantly recognized where she was, began to cry, and repeated, "All done! All done!" over and over through her sobs before drifting off to sleep.

When the surgery was over, Dr. W spoke to Brandon and I.  He said the surgery went well and she had no problems with it.  There are two areas of concern in the eye where he and Dr. P are concerned that the cancer may have spread.  Dr. W said that just looking at the eye he couldn't see himself that it has spread, however it is difficult to tell and that the people from pathology and Dr. P from oncology would be running a series of tests on the eye to determine the need for chemotherapy.  We should know the results of that next week.

We stood around Liv's crib after they wheeled her into her room after surgery, watching her sleep.  After a few minutes, she opened her eyes, smiled, clapped her hands, and in rough, scratchy voice said, "Good job!" We all applauded her and she drifted off to sleep again. 

Right now Liv is sleeping peacefully in her daddy's arms.  She will only wake up for a few seconds at a time.  She will be kept mostly sedated the next few days, and for that I am grateful.  All of the prayers and love said for our little family are being felt in ways you can't imagine.  We are so grateful.  Please keep them coming.  This road is far from over. 

Tuesday, September 27, 2011

Love 4 Livi Benefit in Lindon on October 29th!!

We are hosting a benefit fundraiser at the Bella Vista Reception Center in Lindon on October 29th!  It will have everything from a rummage sale, amazing boutique vendors, food, entertainment, silent auction and raffle to a full Zumbathon!

If you would like to be a boutique or food vendor, entertainment, or have donations to offer for the raffle or rummage sale, please contact Lindsey or Hana for more information. Thank you!

Lindsey Bean 801-503-4931 or
Hana Benson 801-419-6400 or

Monday, September 26, 2011

She is Happy.

The human spirit is stronger than anything that can happen to it. ~C.C. ScottEvery time I talk to one of my sisters or my mom up in Washington, I can hear live squealing and chattering in the background. She is still happy as ever.

One morning, a couple days after they had gotten home from Seattle, my mom and Katie went in to get Liv out of bed. They opened the door and before they could say a word Liv looked up at them with her enormous grin, clapped her hands and said "Happy!"

She is a constant reminder of happiness.

Liv goes into see her oncologist tomorrow so please say more prayers for her tonight.
And MANY Thanks to everyone. Your kind thoughts, and generosity have been overwhelming.

Wednesday, September 21, 2011


To all who have something to give...we need you!

This is the official call out for items that you may wish to donate for the auction.

Items will be accepted until October 1, 2011.

If you wish to donate an item, please contact JaLee Rappleye at

Thank you for your support and love.


(Written by blog contributor Lauren)

I had the privilege of getting to know Julie during the short time she spent in New Jersey. I always admired her and thought she was an incredible person in so many ways. In truth I wished I could be more like her. She has an amazing spirit, and is just a wonderful person to be around. So while Julie and I were never the closest of friends, I know she has friends much closer than me who are probably more qualified to write this... I can't help but feel drawn to her, and an overwhelming desire to help her in anyway I can. This page has been set up by Julie's friends to help raise funds for all the many expenses that come along with having a baby with special health needs.

This might be a good time to tell you about Julie's sweet two year old daughter Olivia. Olivia is just the most beautiful precious little girl you could ever lay eyes on. And unfortunately I've only ever been able to do so via pictures! :( But even through pictures this little angel's sweet spirit shines through. This is my version, pieced together from Julie's blogs, of Olivia's story. So sit back, grab a tissue and read away...

When Olivia was first born she was absolutely beautiful, and breathtaking, and squeaky. She had trouble with eating, rabid breathing, and this adorable, yet troublesome, squeaking. She was diagnosed with Laryngomalacia. It was manageable and would likely resolve on it's own. It posed some problems, but we managed. After 11 months of RSV, multiple ear infections, and hospital stays they were going to have tubes put in Olivia's ears. It was at this point someone noticed that something more may be going on with sweet Olivia. This doctor recommended seeing a geneticist. Scary words for any mother to hear. In Julie's words here is what she found out from the geneticist: "Olivia has a very, very rare chromosomal disorder called 13q Deletion. As I understand it, at her 13th chromosome, there are breakpoints. Within those breakpoints are about 102 genes. That missing material of those genes is what is causing many of her problems. There are learning disabilities and developmental delays in addition to the various health problems. We aren't sure to what degree this will affect her, although she has already been in various therapies for several months already addressing these issues. Most notable, Olivia is missing the RB1 gene. Because of this specific deletion, Olivia is at an incredibly hi risk of retinoblastoma (eye cancer) bone tumors, and other related tumors. While the 13q deletion syndrome is not fatal, complications from it can be. We are being sent to see special teams in Seattle at an urgent status to start doing these scans. She will have to have these scans every 3 months for several years."

Not what any mother ever wants to hear. But in May Olivia had her first eye scan and all seemed well. I cheered silently in front of my computer when I read Julie's update. And then my heart sank this week when I saw postings on Julie's facebook that things were not well with Olivia. As it turns out, that while Livi was tumor free, just a few short months ago - that is no longer so. She recently took a spill while playing at the pool, that caused some unusual reactions. What appeared at first to be a bump and nothing more soon alarmed Julie that not all was well. Livi's once blue eye now appeared brown, and a glimpse of white under her left pupil. Alarmed Julie took Livi to the local hospital. Here they never heard of Livi's condition, assured Julie she'd be fine, and sent her on her way. Could you just imagine the mama bear instinct kicking in here? It must have been heart wrenching to have to wait until Monday to get in to see their specialist in Seattle. And then the day came where they got their answer.... and I can't imagine ever hearing these words... but Julie's worries and suspicions were confirmed, Olivia had developed a retinoblastoma. Considering she was tumor free just a few months ago, and now has a sizable eye tumor that was confirmed cancerous is quite alarming. As of now, it appears she will lose her left eye and start chemotherapy. With a two year old daughter of my own, my heart just shatters imagining what it would be like to hear those words about my own daughter. Cancer. Chemotherapy. Removing an eye. It's just too much for any mother to bear.

Having to worry about holding her family together is enough for Julie to handle right now. Our hope and prayer is that this little blog will help ease her burden in anyway, especially the financial aspect. Julie and her husband both work hard to support their family. They will miss many hours of work, have to travel, undergo tests and procedures not entirely covered by insurance. If you have the means and the desire to donate I know any amount would be so appreciated. Currently, the only way to donate is to go to your nearest Wells Fargo and ask to make a donation to The Olivia DeCoria Donation Fund. That should be the only info you need. We are working on getting a pay-pal account set up, and a silent auction will be under way soon. If you can not donate financially but would like to donate to the auction please contact me, or any of the contributors of this blog.