Amazing Grace's Fight

Hi Everyone! This page will be updated and managed by Carly Goodman, Gracie’s Aunt, and Dawn Carrington, Jenny’s best friend. For the most current update on Gracie, please visit Gracie's Caring Bridge Page Here.

Our Amazing Grace has been diagnosed with an exceptionally rare form of cancer. We have a very long journey ahead of us, which will include extensive testing, surgery, chemotherapy, potential travel and many appointments, etc.

**Update from Jenny** August 8th 2022

***Outside of the day we were told that Gracie had cancer, today was probably the hardest day we have had so far. We have lived in this in-between/not knowing/what if stage for exactly 4 weeks as of today. We found out on July 11th that she had cancer and the past 4 weeks have been unimaginable. Maybe surreal is a better word. Chris and I were talking today that it still doesn't seem real. Finally hearing the diagnosis as well as the plan of care was extremely overwhelming today. All of the what ifs became our new reality and Chris and I have both shed a lot of tears today.

Today we had an appointment with Dr. O at 9am. We didn't leave until noon. Chris and I spoke with Dr. O without Grace for about 45 minutes and discussed her options for care moving forward specific to the order of events as well as our two different options for Chemo and what long term effects all of these things could have on her. I feel like we continually hit a place where we feel there is nothing else we can be told that could be worse...and then we are dealt something else.

Gracie will undergo surgery this Thursday. They will resect her tumor (clear her margins) as well as place her port for chemo. They are allowing her two weeks to heal and on Friday, August 26th she will be admitted to start her first round of chemo. She will be receiving chemo for the next 6 to 8 months. Likely all of her chemo will be in patient meaning she will be in the hospital 3-4 days each of her 21 day cycles...however we hope this will change and we will be able to do her chemo at the clinic. This number is not exact but could be longer depending on how things go. They are also running genetic testing on her to see if she carries any cancer genes as well as testing her cancer to see if it is positive for something else which would give us an option of another drug that has proven to work. As we continue on the rare journey, we are kind of backing into things in terms of treatment. There was some good news - Sarcomas that are superficial like hers have shown to be less likely to return.

I have always promised Gracie I would be honest with her to the best of my knowledge about her diagnosis and her treatment. For the first time today, she was told the name of her cancer and what her treatment would be moving forward. We have been living in this weird space the past two weeks where life seemed normal because Gracie is still Gracie. She hasn't felt sick yet and I think for all of us it made today and knowing what the coming days will bring even harder. The chemo will make her very sick. Having to sit in a room and watch someone tell your 9 year old what chemo is, how it will make her feel, that she will lose her hair, that she cannot go to school until at least March, that she cannot play soccer....was one of if not the hardest thing I have ever had to sit thru. It was literally heartbreaking. Gracie was very stoic as tears rolled down her face... she didn't say much. I am very thankful for the wonderful child life specialists at Levine's. They are literal angels. I feel like I am leaving other stuff out - but in days like today... adrenaline carries you thru most of it and then you crash. My brain is literally fried.

I do want to continue to say thank you. People have and continue to show up for us in ways I could have never imagined. I am literally brought to tears multiple times a day by the generosity of everyone. I am so very thankful our family and Gracie are so loved. Please be patient with us responding to all of the texts and messages. If it takes us a while - it is not intentional we are just trying to be present with her as well as work thru all of the things coming our way. We love all of you and ask that you continue to keep Gracie in your prayers.

Specific Prayer Requests: Please pray for her surgeons and his hands on Thursday. Pray that they get clear margins easily and that the placement of her port is seamless. Please pray for Gracie's mental health...that she continues to digest all of this information and that her heart is put at ease. Please pray for Jackson and Izzy as well as Chris and I. We know she's got this! We are ready to fight this and we are going to win. I will finish this on a funny note ... Most of you should know Gracie's love for The Rock aka Dwayne Johnson. If you don't know she is obsessed. After all of the craziness of today, in true Gracie fashion...she said, "Mommy, Will I still be bald at Halloween?" I told her yes...she replied, "YESSSSSSSSSSS! Now I can be Dwayne Johnson!!" LOL She continues to find the positive in all things. She truly is #AmazingGrace!

Grace is nothing short of a miracle and has been since she came into this world! If you know Grace, you know her kindness, humor, compassion, love, and fierceness. We need our Grace. Dealing with a diagnosis like this is extremely difficult, and we need all the love, hope, prayers, and help we can get.***

Given the circumstances, Jenny and Chris need the ability to focus on Grace’s health, and the financial piece of this puzzle is ever looming. Please consider donating to our fund to help cover the expenses incurred by the Sage Family as they navigate this unimaginably difficult journey. More than anything, please pray for our Amazing Grace.

#AmazingGrace