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.
God Bless,
Erica
Very beautiful little girl, and I send all my prayers to her and your family! I wish all the best through this step in life!
ReplyDeleteThinking of you & your family Erica! I got a surprise for Ania when you return home. Have a safe trip.
ReplyDeleteShe is so beautiful. As are both of you. Have a safe trip home. Can't wait to hug you all. xoxo
ReplyDeleteErica, what a beautiful song to be "hers". It is so fitting and so perfect for this period in your life. The entire album from Mumford & Sons is a great one if you have time to listen.... I love it. That song was super popular a year ago at this time too, I remember because my best friend had just given birth to her son 8 weeks early and so he was in the NICU while she was at home. Everytime I heard it play I thought of how she must feel, going home without him, waiting for him to come home. Such a great song that can be good support for so many. I wish for peace for you and your family. And am praying for you often.
ReplyDeleteI'm praying for the 60% chance that it's NOT metastasized and that your beautiful daughter is cancer-free. I am a firm believer that Faith can move mountains ... it has for me many times, and it will for you and your Dainty Warrior. God bless Ania and all of you!
ReplyDeleteI don't know you, but I know Elizabeth Macias. I read her post. Your precious daughter is in my prayers. I am praying that God will heal her and strengthen you. Trust God and have Faith. Dovey A. White
ReplyDeleteStay strong girly! Have faith and we will continue to pray! ::hugs::
ReplyDeleteSending love from Colorado:
ReplyDeletehttp://www.youtube.com/watch?v=rGKfrgqWcv0&feature=kp
Many, many prayers coming to you and your family tonight. God has walked alongside me throughout all my eye adventures, and I would be willing to answer any questions or offer any words of comfort as you journey this new path. Please feel free to reach out - I am an elementary music teacher with one eye, having been born with one and then having the blind eye removed just 2 years ago. In the meantime, my prayers and thoughts are with each of you. You can reach me at: Brenda1eye@gmail.com at any time. Peace, Brenda
Prayers and love to all of you. I look forward to seeing you when you are back in Chicago. In the meantime, you are all in my heart and thoughts. Please let me know if there is anything I can do to support you.
ReplyDeleteLove,
Susan
Hoping the best for you all. <3
ReplyDeleteI can't imagine your strength and sadness. Please know that I am praying for you and your daughter. May God heal her quickly and give you peace in this time of waiting.
ReplyDeleteDr. Shields is AMAZING and I am so glad Ania is under her care.
ReplyDeleteDear Erica and Family
ReplyDeleteMy son is a retinoblastoma survivor. He was diagnosed at 2 and is now 7. It is strange but I still struggle with the right words to say to new families. This is your's and Ania's unique journey. Just know that there is life after childhood cancer, and retinoblastoma. There is life after hospitals and pokes and doctor visits. Life is never quite the same but it does go on. You see less hospitals, less doctors no more pokes. It just takes time to get there. One day at a time. My son lives a healthy happy life. He plays baseball, and basketball. Half of the time no one knows he has monocular vision. I always loved the words "you never know how strong you are until being strong is the only choice you have" Erica if you need to talk to another RB mom I am always here. I always found it helpful to talk to people that were in my shoes. To see their kids do great things and see for myself that it will get better. My email is nicki.connelly@rbaz.org. Ania is so lucky to have you. You are all warriors. Fight on....