Today we did a lot of WAITING prior to her eye removal procedure. Lots of time spent keeping her busy and for us to contemplate what was about to happen. Agony for us. Ania, just danced and played like she always does. Without fear.
She wore her special butterfly wings and ballet shoes and just put on a show for the waiting room. Hardly a single complaint from her for the nearly 6 hour WAIT time.
When we were finally called back, she started to get a little nervous and anxious but remained as brave as can be. We helped her into her hospital gown and she climbed into her daddy's lap for a little nap. While she was asleep, the doctor came in and marked her face with an arrow pointing at her left eye. War paint. A map to the war zone in her eye.
She went back for her procedure shortly after and Mike and I took a moment to hug and reassure one another that all will be well.
Nearly 2 hours later we were summoned back to see our girl. She looked so very peaceful and angelic- even with the large bandage covering half of her sweet face.
Dr Sheilds came in to tell us that the eye removal procedure went very well and that removing her eye was absolutely the right decision. Her eye was full of disease- over A MILLION tumor seeds were in that eye. It gave us great relief to know we did the right thing to save our daughters life. No questions about that fact remain.
However, one question still remains that we did not expect. Apparently the optic nerve of Ania's eye appeared white/pale and that can be a sign some the eye cancer metastasized (spread) beyond the eye. It also could just be a sign of damage done by all the intra arterial chemotherapy she's had over the last few months. She gave us a 40% likelihood that it's still cancer and in that case, Ania would need to have 6 months of systemic chemotherapy. Not what we expected nor wanted to hear. It actually devastated us. Ania's removed eye will be sent to pathology and in 2 weeks we will find out which path the journey is taking us down. More WAIT time. I was fully prepared to celebrate a cancer free daughter today. We unfortunately don't get that celebration yet......
This information left me feeling angry and weak. The weakest I've felt through this whole 6 month experience. Thankfully Ania has not seen me at this low point because she has been sleeping/resting through it.
When we returned to the hotel, I felt so angry and crushed. I did myself (and everyone else) a favor and put on my running shoes and went down to the hotel gym. I kept the image of Ania in the recovery room in my mind and played her "I Will Wait" song on through my headphones. I ran very hard for the length of the song. As soon as it was over, I lost it. I cried and just mourned the loss of our celebration day I was so looking forward to. After a few minutes, I felt better- and it hit me.
"I WILL WAIT FOR YOU.... "
I will wait for my Ania. She will get her celebration day. It may be in 2 weeks or it may be in 6 months. It doesn't matter. She WILL get her day.
"I will be bold. As well as Strong.
I'll use my head, alongside my heart."
We will get our celebration day. Just not today. It's all just part of the bigger picture and HUGE impact Ania is having on showing us what true strength is. I find peace in knowing that. It's all I can think right now as we WAIT.
"I WILL WAIT FOR YOU.... " and I will sing it loud and proudly like Ania does... Or just run really hard when I hear it ;) - for Ania.
Ania & her special Rosie doll resting this evening.
First post-op smile :) that's my girl!!
Tomorrow we return to Chicago. We will try our best to focus on recovery and helping Ania adjust. In a few weeks we will know what's next as far as this crazy cancer journey. In 6 weeks Ania will get a new special eye made just for her. What an emotional day today was but at the end of it all, we will still take time to smile, laugh, sing, dance, run or do whatever it is that allows us to keep up our strength and bring us joy!
Thanks for all the kind words, thoughts and prayers today for Ania and for us. It does not go unnoticed.