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.