Amazing Graces Journey
Home
One of Graces NICU nurses at the Cleveland Clinic made this for us.
NICU adventures
More Pictures of my warrior princess
More Pictures of my warrior princess
More Pictures of my warrior princess
More Pictures of my warrior princess
Grace
Once upon a time she was able to be home. Grandma Chong knitted her this cute hat.
She still had a little bit og hair, this was early in her treatment, learning how to strengthen thos
Grace was born 33wks 4.12#
Amazing Graces Journey
Home
One of Graces NICU nurses at the Cleveland Clinic made this for us.
NICU adventures
More Pictures of my warrior princess
More Pictures of my warrior princess
More Pictures of my warrior princess
More Pictures of my warrior princess
Grace
Once upon a time she was able to be home. Grandma Chong knitted her this cute hat.
She still had a little bit og hair, this was early in her treatment, learning how to strengthen thos
Grace was born 33wks 4.12#
Overview

Amazing Graces Journey

Grace was born prematurely at 33wks on 10/24/2016, weighing 4.12 pounds. She immediately was a fighter, as she and her mother survived an Amniotic Fluid Embolism (AFE), a very rare condition that remains an unpreventable, unpredictable and often fatal complication of pregnancy.

From birth Grace was diagnosed with Downs syndrome, (TMD) Transient myeloproliferative disorder (a form of Leukemia) and due to being premature; heart, liver and kidney issues that eventually resolved over time with some treatment.

Grace received her first round of chemo at only 2 days old and had several blood transfusions following that. The Leukemia went away and we where told there was a 20-30% chance of it coming back when she got older. During her time in the NICU it was discovered that she had an oral aversion and she required a surgery to install a G tube to receive her nutrition directly to her stomach. Grace failed her hearing test and through tests confirmed that she was bilaterally deaf. Grace spent her first 2 months of life in the NICU, We spent her first Halloween, Thanksgiving and Christmas in the hospital. She was released on Dec 27th 2016 We were overjoyed to finally have our baby girl home!

It was short lived, within a few months she had gotten sick again and she was hospitalized in Feb.2017 for about 7 weeks.

In Aug. 2017 we found out that the Leukemia (now AML) had returned. Throughout the testing process the doctors also discovered that she had it in her spinal fluid.

**Leukemia (AML) is common in children with Downs Syndrome, however there hasn't been a case like my daughters since the 1990's. The fact that it was found in her spinal fluid is what makes her case a more complex case.**

We were given two options-one being a more aggressive treatment that included lumbar punctures as well as chemo injections into her spinal fluid in hopes that we are able to completely eradicate the Leukemia in her spinal fluid as well as the rest of her body. The second was a more standard chemotherapy that held a higher risk of potential relapse. We decided to go with the longer more intensive treatment with the hope that she will be cured and not have to go through this ever again.

She has managed to go through so many countless pokes, tests, and procedures all with a smile on her face. Anyone who has met her or has seen her picture can clearly see she is a very strong, happy, blessed and loved little girl. My family lived in the room with her at Cleveland Clinic Main Campus beside her crib as she fought to beat this ugly cancer.

Grace has received several chemotherapy treatments, lumbar punctures as well as numerous blood and platelet transfusions and surgeries.

We celebrated Graces 1st birthday along with our second Halloween, Thanksgiving and Christmas in the hospital.

Our amazing little girl has beat the odds living through an AFE and now beating cancer 2 times before she turned a year and a half!!!!

This whole situation has taken its toll on us in ways we never imagined. My hope is that there will be a cure for childhood cancer and for my sweet girl to never have to fight Cancer again.

No child should ever have to endure what our little girl has been through. She is such a little fighter, so strong and brave. She is the perfect combination of princess and warrior!!

Thank you for taking the time to read Graces story and please share to help raise awareness.

Psalm 91: 4 "He will cover you with his feathers, and under his wings you will find refuge"

Comment on this Story

Please login to comment on this story.

SB

Shannon Beach on February 05th, 2018

Love this. This is one of my favorite quotes. I have it hanging in my daughter's bedroom.

SB

Shannon Beach on February 05th, 2018

Thinking and praying daily for baby Grace! What a great day Valentine's Day will be--last chemo :)

SB

Shannon Beach on January 30th, 2018

Valerie, she is the most precious, most beautiful baby! I admire your and her fight. YOU GOT THIS!

Want to receive updates on this story? Register now and follow this story to receive updates straight to your inbox!

Register Now

Sign Up to Help

Signing up for

Share This Story

Click one of the icons below to share this story and help spread the word!

Photo Gallery

1 of 22