13 Pavements

Wednesday, September 14, 2011


Where to begin?  I don't even know.  Words, thoughts, and emotions are colliding so violently within myself it's hard to make sense of it all.  But I will do my best.

Last Friday, Liv took a nasty fall at the swimming pool resulting in arguably the larges goose egg I have ever seen right above her eye.  Like any other mom, I obsessively checked her for signs of concussion for the next 24 hours.  As far as I could tell, everything seemed okay.

The next day as I was changing her I studied her eyes, still worried about the angry bruise that had formed over her eye when I noticed a glimpse of white underneath her  left pupil.  Alarmed, I looked more closely and saw not only the white underneath the pupil, but also that her once blue eye was now brown.  I showed Brandon and we rushed her to the ER, unsure if the change in her eyes was due to her fall or if it was related to her chromosomal deletion.

At the hospital, I explained to her doctor (who had never heard of 13q deletion)  the risks of eye tumors associated with the deletion and why all of this concerned me more than it would if she only just had a bad fall.  I poked her forehead a few times, shined a light at her, said he "wasn't sure" what caused the eye color to change, told us she was fine, and sent  us home.

We were furious.

It was agony waiting the rest of the weekend to call her specialist in Seattle.  On Monday night, she returned my message having cleared an opening for Olivia the next day.  Since, the husband was out of town, I arranged for my sister, Katie, to take over my business for the day and my sister-friend Nichelle went to the hospital with Liv and I.

They started with the typical eye exam for small children, where they show the child a series of gray boards where the child my find the square of vertical lines on it, each board getting smaller and smaller.  The checked with both eyes uncovered and then with her bad eye covered and she did great.  When they covered her good, Olivia began to panic and started to cry.

The assistant and Nichelle stood in front of Olivia as I held her, trying to get Olivia to find them, to look for them.  Olivia only cried harder.  Nichelle said, "Livi, find Aunt Shell."  A fresh wave of sobs escaped her as she reached out towards Nichelle's voice, but never making contact with Nichelle's hands or face.  Nichelle and I looked at each other and we both knew this was bad.

As we walked back to the exam room I said a silent prayer pleading to Heavenly Father to brace me, to soften the blow that was sure to come.

Minutes later, Dr. H came into see us and began to examine her eyes.  It took less than four minutes for Dr. H to confirm that there is, in fact, a tumor.  I felt my heart seize.  Somewhere, deep inside me, I already knew this.

They dilated her eyes to get a better look and then performed something similar to an ultrasound on her eye to get a better idea of the kind of tumor, the size, and placement of it.  The second Dr. H stepped out of the room, my world seemed to collapse in on itself and I began to sob.

Another doctor was brought in to consult on the images and look at her eye himself.  I couldn't seem to find my voice and remained mostly quiet, softly kissing the cheeks of my exhausted child.  Thankfully, Nichelle was there to ask all the right questions and keep me from falling apart completely.

At this point, they are quite certain that the tumor is a retinoblastoma, which is cancerous, and that based on the size of the tumor that it is most likely Stage E cancer (like Stage 5 cancer).  Back in May, her exam was completely clear.  She had no signs of tumors.  They are alarmed and concerned that this tumor has grown so big in such a short amount of time.  This is completely baffling to them.  If what they suspect is true, Liv's eye will need to be removed.

When I called Brandon, we didn't speak for a long time and just cried together.

This coming Monday after Olivia's Botox surgery, they will do a CT scan to confirm what they already suspect.  Additional staging procedures will be done, an MRI to make sure the cancer has not spread, and surgery will be done within the next couple of weeks.

None of this seems real.  It is such a cliche statement, probably because it is so true.  There are no words to articulate the heft of this burden, the seemingly infinite unknown that comes with it, and the sorrow we feel for what our daughter, our baby, will have to go through.

We will know more on Monday.  I may not sleep until then.  In the meantime, please, please, please pray, think happy thoughts, send love, light a candle, chant, or whatever it is you do, for our sweet girl.


  1. It doesn't matter how many times I read and re-read and say these words...It brings me to tears every time. Your strength is amazing and inspiring Jules. I love you and that precious baby girl so much.

  2. Julie, I am so sorry for what you may be going through at this time... We will pray for Brandon, You and Olivia. She is such a beautiful sweet little girl.. We love you. I can't wait to meet your sweet olivia someday. Our thoughts, prayers, and positive thoughts will be with you especially over the next few weeks.
    Liz Blake Memmott

  3. Julie, so sorry your little Olivia has to go through this. Hard to realize that the trials are for our good while we are going through them. Just doesn't seem fair that such an innocent little one would have to deal with so much already. Our thoughts and prayers are with you at this hard time. Give sweet little Olivia hugs and know we are sending hugs for you and Brandon as well.

    Love, a friend, Emily Blake Albrecht

  4. Oh Julie...i'm sobbing as I write this thinking of you, brandon and Liv and the trials you have already overcome and have yet to conquer. As i've mentioned before, you have more strength in one pinky finger than I could ever hope to muster. You are such a great example to me and I ache for your sadness during these unknown times. Sure do love you...

  5. I'm so so sorry. We will most definitely be praying for all of you.
    Sending much love to your sweet family.

  6. Julie, i'm so sorry that your little family is going through this. I can only guess the amount of mother's agoney that you are going through right now, my family will pray for your sweet baby, and hope that everything goes well.

  7. Am I correct when understanding that the tumor was there before the goose egg? And if it weren't for that fall, however terrible, it may have been too late before it was detected? If that's so, I marvel at the mysterious workings of our Heavenly Father, who is clearly mindful of you and your trials. My tears and my prayers are pouring out in abundance for you!

  8. Dear Julie, I am so sorry you and Olivia have this really, really hard thing to go through right now, but then I remember a truth I've always known- Olivia is not just any little girl and you are not just any Mother. No matter how profound the struggle, or how formidable the journey may seem, it will be OK. I love you and you are in my prayers always.

  9. Sometimes I wish that I had magical powers that I could use in moments like this. I would use them to take away all the hurt, confusion, suffering and fear that comes with trials like these. I would make it so that you and Branden wouldn't have to continually worry. I would make it so that Olivia would be healed. Obviously, I can't do any of this, but I hope that my words have some magical powers when I say I love you all. My heart aches for you, but it also knows that our Heavenly Father is watching over you all, especially Olivia. Julie, I knew you were meant for great things the moment I met you. Your strength, your faith and your constant positivity will only be magnified in this difficult time. Hold on. Please let me know if you need anything.

  10. Julie I am without words of comfort. I don't think there are any. Love you so much and pray that the doctors will feel the spirit guide them in their endeavors to heal Liv.

  11. Julie..wow. I can hardly type because I am just crying for you. I really don't know what to say except I am so sorry and I will pray for you and your sweet little girl. You know Kaden and I both think the world of you and we will keep you in our thoughts. Good luck through everything coming in the next little while. I hope you will feel comforted.