We have had the blessing of not living in the cancer world - no scans, labs once a year - but we don't hold our breath waiting to see if she has platelets or if she has white blood cells... or lay awake all night worrying about if her 10 times normal liver enzymes will keep her off treatment. Our life has become strangely normal.. her ups and downs are now driven by the agony of pop quizzes, project deadlines, Spanish tests and the lack of her favorite junk food in the house if I don't get to the store- so I don't often think of documenting it on Caringbridge.
But this raises the other question.. the site exists- if I post an update - will anyone read it? Do the emails that we all used to get notifications still work? I guess I will find out!
But this Christmas -I have been thinking of everyone who prayed for her... I have felt like I needed to post an update.
A praise ... We have been blessed. We have had so many people praying over the years - and she is healthy and dancing this Christmas. If you are around Columbus on Saturday, Dec 15, She will be Clara in the Dancer's Studio Production of "The Nutcracker"... Please join us if you are able! Tickets are availablee at the door - and it will be in Columbus North Auditorium at 2:30 pm.
I will be the lady in the front center row quietly sobbing my eyes out in overwhelming gratitude that she is here to dance.
I have attached a link to a newspaper article about the production in The Republic.
I am sitting in North Auditorium now watching a rehearsal as the prepare for the weekend. It brings back a lot of memories. When Kate was 3, for the Nutcracker performance in 2005 - . A young dancer named Sarah Farnsley was dancing as the Sugar Plum Fairy. Her mom invited Kate to the dress rehearsal. Kate couldn't go to the performance because White Blood Cell Counts were very low from chemo... But the doctors at Riley had a huddle and decided that she could go to the dress rehearsal with a mask. And she sat on my lap in this auditorium that I am sitting in right now and watched.. mesmerized. I still remember feeling her little bald head warm against my cheek as she watched. And she said "Mommy, I want to do that!".
The next year, she did. She was a little puppet in the creative movement class. Her hair had grown back enough to put into two little curly pig tails, and she was one of the little puppets that hide under Mother Ginger's skirt and come out and dance. The dress rehearsal was in the evening - we had an oncology appointment at Riley earlier in the day to go over her scans.... but no problem! We had prayed about her scans, her two previous sets of scans had been clear.. she was off treatment.. I remember thinking, "Well, let's just get this appointment done so we can enjoy The Nutcracker and Christmas."
But that is not what happened. We found out that day that the cancer was back. And all of a sudden our world collapsed. That Nutcracker became even more important - because we thought it would be her only one. We had been told that relapses of St IV Neuroblastoma were not survivable - so we desperately wanted to give her that one performance!! And she had the best time being a little puppet!! The adults backstage were holding ourselves together by sheer force of will to not cry in front of her. And she was a little puppet with little brown curly pig tails and performed with her class. She loved it.
Her doc at Riley told us a few weeks later, "I have been digging into this and the doctors at Sloan Kettering are the only ones who have had much luck with kids like her, and they have agreed to see her. Maybe they can help her. Maybe they can give you a little more time with her.". Long story short- lots of folks prayed and Dr Kushner and Dr Modak at Sloan did help her... and she survived, she is here, and she has danced in every Nutcracker production that Dancers Studio has produced since then. And she is 16 year old, she is dancing the part of Clara on Saturday.
I can't help but be overwhelmed as I sit here letting it soak in - It has been such a long journey and we are so blessed to have her here. Thank you, Lord.
And so - to everyone who has been praying for her over the years -please feel free to join us Saturday afternoon if you are able! I will be the one in quietly sobbing my eyes out in the front!!