Help Baby Grace's Brain Cancer Battle

For: Grace Skuches
Township of Washington, NJ
Organizer: Jennifer Dondero Skuches
Help Baby Grace's Brain Cancer Battle (Grace Skuches)
$37,501
of $40,000 goal.
Raised by 405 donors
93% Complete

The Story

At 6 month old, our daughter Grace, was diagnosed with Atypical Teratoid/Rhabdiod Tumor (ATRT). An extremely rare, very difficult to treat pediatric brain tumor. The tumor has been fully resected and there are no other tumors present in her brain or on her spine. Her spinal fluid was negative for cancer cells. We are very hopefully of a positive outcome. Grace has already completed 5 rounds of chemotherapy, 1 stem cell harvest, and 3 stem cell rescues. In December, it was determined that Grace was No Evidence of Disease.  By the first week in January, Grace had facial paralysis that ultimately was determined to be caused by a recurrent tumor.  The cancer was back. She started Proton-Beam Therapy in January 13 and completed the treatment on February 24. She has been on maintenance chemo for over 18 months. Grace has endured a many setbacks, like a subdural hematoma, shunt revision, and a PICC reinsertion. She is a fighter! 
In August 2017, Grace relapsed for a third time. She is now in hospice care.

We've created this website to keep friends and family updated. We will update as we go through testing and treatment. We appreciate your prayers, support and words of hope and encouragement during this time when it matters most.

We are truly asking for prayers! We also will be experiencing large medical bills, travel expenses and Mommy will be on unpaid leave from work unless leave is donated from other Federal Government employees. We are asking if you work for the federal government and can donate leave please contact Mommy or Daddy.  If you want to help out financially you can through this website.  If you still want to help and can't financially, we ask that you donate blood in her honor.

Fundraiser Updates

Posted on September 17, 2017

Posted on September 17, 2017

Saturday September 16, 2017

Today, we were alone, as a family of 4. No grandma's, no babysitters, just us. We survived.  We ventured out to an annual fundraiser for The Friends 4 Michael Foundation that has been very supportive of our family. The event is Bikers Against Brain Cancer and it starts at Orange County Choppers Headquarters in Newburgh, NY.  Last year, we made it with Grace and John.  They both had a great time.  This year, we made the decision to get out of the house and attempt to attend.  It was hard. Mike, who runs the foundation, has been a big support for us.  He lost his son Michael to brain cancer. He knows how we feel right now.  He was really glad to see us. We got to send off the bikes, even getting to meet Paul Teutel Sr from American Chopper and OCC.

We had survived.  We both had moments that were really hard. We stopped at the McDonald's drive thru and that was really hard for mommy.  I'm used to getting 2 trays of pancakes and hash browns, prepping them and serving them up to the munchkins in their car seats.  Today it was just for 1.  Rose had her bottle.

While spending the rest of day at home, building legos with John and chasing Rose around, we decided to eat out.  I'm on a "no cooking" streak so it was order in or go out.  Many mom's in our town have generously donated gift cards to restaurants in the area.  We decided to venture out to the Garden State Plaza to eat at Legal Seafoods.  Now if you know the GSP, it is insane! I really thought with so many people, I wouldn't be able to focus on Grace. I was wrong.  We made it through dinner.  John was great as usually, but Rose isn't used to restaurants since she we hadn't taken her to many because of Grace's health.  She was a little tough. The people next to us complemented us on our beautiful family. And how blessed we were. My heart burst. I wanted to tell her about our Grace and it wasn't a complete picture of our family.

After, dinner we walked around the mall. Rose was in Grace's stroller.  Pushing the stroller, I only saw lower legs and feet.  I swore it was Grace every time I looked down.  At one point Rose pointed with her finger at balloons, and I lost my breath. It was completely a Grace move.  I held my composure the entire trip, but I was dying inside.  I lost it when we got home. 

I proud that we went out, but I'm drained from it. 

I haven't gone into Grace's room since she passed.  Tonight, I went in and touched everything. I sat in the chair in her room for about 30 minutes.  Mostly crying.  I smelled her towel, her stuffed animals, her pj's, hoping to get a whiff of her, but nothing. Her smell is gone from the house.  I gently touched her Bible, with her name engraved on the cover. I thought about the many nights I slept on the floor in her room, watching over her. I could curl up again and sleep right on that floor. 

On Thursday, 1 week after her death, Ken and I went to our church in the city and spoke with our priest. It helped. The cemetery is on the grounds of the church. Grace's ashes are interred in a niche in the cemetery.  You can see her spot from the courtyard. We actually entered through the back door, ironically we took photos in front of it when we got married. We made are way to Grace. We had the whole place to ourselves.  We both cried and talked to her.  We stood in silence looking at the 100 year old maple trees protecting her. I look forward to seeing her every Sunday.

This Sunday, September 17 at 7pm, a candlelight vigil will be held near our house. It is being organized by the amazing moms in our town.  All are welcome to attend. It is a the corner of Salem Road and Barry Drive in Township of Washington, NJ. We plan to sing and pray with our neighbors. Gold and purple balloons will be released.  The purple balloons are to honor Natalie Lopac, a tenth grader in our town that has been battling 2 different types of cancer for years now.  She passed away 1 week after Grace.  

Thank you all for your continued love and support. We are living moment to moment. Pieces of Grace are everywhere in our house. How do you remove them all? How to do you just put them away? 

Posted on September 10, 2017

Posted on September 10, 2017

Sunday September 10, 2017

Today we inter our beautiful daughter, Grace.  We welcome everyone to her funeral mass to celebrate her amazing life. Even if you never met her and she has inspired you, please come.

Ken and I are completely devastated.  Know that we see all your posts and words of prayer and support. We love you all.  For those that attend, know we see you and appreciate you being there.  We might not reach each of you to speak with, but we know you are there for Grace.

Grace’s Funeral Service will be held at The Basilica of Saint Patrick’s Old Cathedral, 273 Mott Street, New York, NY 10012 on TODAY, Sunday, September 10, 2017 at 4pm.  Interment to follow in the Columbaria. A gathering of family and friends to immediately follow at the St. Patrick’s Youth Center, 268 Mulberry Street, New York, NY.

Our church doesn't permit large flower arrangements. In lieu of flowers, memorial contributions in Grace's name can be made to:

Hope and Heroes Children's Cancer Fund
AIM Studio
161 Fort Washington Ave, IP-7
New York, NY 10032
http://hopeandheroes.org

The Emily’s Smiles Foundation (which will help fund research to Pediatric Brain Cancer, specifically ATRT)
P.O. Box 241, Royersford, PA 19468

Cure ATRT Now
1 Colonial Drive, Merrimac, MA 01860
http://www.cureatrt.org/grace


Expressions of sympathy may be addressed to:
The Skuches Family, 97 Salem Road, Township of Washington, NJ 07676


Once again, September is Childhood Cancer Awareness month.  Please "Go Gold" for Grace and all the other warriors out there.  We are still trying to fulfill the Amazon Wish List for Grace's art studio at Columbia.

Below is the Amazon Wish List titled "Grace's Art Studio".  
https://www.amazon.com/gp/registry/wishlist/?ie=UTF8&cid=AUKAA6MLZ0FRT
You can also search "Lists" by typing in "IP-7"

This list is some dream items that the studio is looking for.  Pick something off the list or be creative and find something you think they would like.  The items will be shipped directly to the art studio.  If you would like to purchase items from someplace else, you can mail them directly to the studio at:
IP-7 AIM Studio Nitza
Herbert Irving Pavilion
161 Fort Washington Ave
New York, NY 10032

Any issues or questions, email me directly at [email protected]


Posted on September 10, 2017

Posted on September 10, 2017

Sunday September 10, 2017

Today we inter our beautiful daughter, Grace.  We welcome everyone to her funeral mass to celebrate her amazing life. Even if you never met her and she has inspired you, please come.

Ken and I are completely devastated.  Know that we see all your posts and words of prayer and support. We love you all.  For those that attend, know we see you and appreciate you being there.  We might not reach each of you to speak with, but we know you are there for Grace.

Grace’s Funeral Service will be held at The Basilica of Saint Patrick’s Old Cathedral, 273 Mott Street, New York, NY 10012 on TODAY, Sunday, September 10, 2017 at 4pm.  Interment to follow in the Columbaria. A gathering of family and friends to immediately follow at the St. Patrick’s Youth Center, 268 Mulberry Street, New York, NY.

Our church doesn't permit large flower arrangements. In lieu of flowers, memorial contributions in Grace's name can be made to:

Hope and Heroes Children's Cancer Fund
AIM Studio
161 Fort Washington Ave, IP-7
New York, NY 10032
http://hopeandheroes.org

The Emily’s Smiles Foundation (which will help fund research to Pediatric Brain Cancer, specifically ATRT)
P.O. Box 241, Royersford, PA 19468

Cure ATRT Now
1 Colonial Drive, Merrimac, MA 01860
http://www.cureatrt.org/grace


Expressions of sympathy may be addressed to:
The Skuches Family, 97 Salem Road, Township of Washington, NJ 07676


Once again, September is Childhood Cancer Awareness month.  Please "Go Gold" for Grace and all the other warriors out there.  We are still trying to fulfill the Amazon Wish List for Grace's art studio at Columbia.

Below is the Amazon Wish List titled "Grace's Art Studio".  
https://www.amazon.com/gp/registry/wishlist/?ie=UTF8&cid=AUKAA6MLZ0FRT
You can also search "Lists" by typing in "IP-7"

This list is some dream items that the studio is looking for.  Pick something off the list or be creative and find something you think they would like.  The items will be shipped directly to the art studio.  If you would like to purchase items from someplace else, you can mail them directly to the studio at:
IP-7 AIM Studio Nitza
Herbert Irving Pavilion
161 Fort Washington Ave
New York, NY 10032

Any issues or questions, email me directly at [email protected]

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