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)
$37,601
of $40,000 goal.
Raised by 406 donors
94% 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 was placed in hospice care. On September 7, 2017, Grace passed away at home. 

We've created this website to keep friends and family updated. We appreciate your prayers, support and words of hope during this time when it matters most.

Mommy is on unpaid leave from work for bereavement.  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 November 2, 2017

Posted on November 2, 2017

Thursday November 2, 2017
We are still having trouble with the youcaring site. You can't search for Grace.  You have to find her directly at www.youcaring.com/Graceskuches  Also, all of our subscribers aren't getting updates.  

Grace is gone 8 weeks today.  It doesn't get any easier.  The hole in my heart is still there and I know will never be filled.  I am a gushing wound that a bandaid can't fix.  
There is so much to say and give you updates, but I fear I can't get it all out.  John is doing well.  Enjoying Kindergarten. He says "I miss Grace, but I'm not going to cry". He is trying to be brave and strong for us.  We keep telling him it's ok to cry.  Rose is busy. She's running and climbing and starting to say more words. Every night we walk up to bed and I tell her "say night night to sister" and we wave and blow kisses to Grace's picture.  A few days ago, she said " Hi sis". I lost it.  I'm glad she is learning about her sister, but it so raw for me. We keep Grace present in everything we do.  We need to but it's emotionally exhausting.  She should be here.  

I went to clinic last week. It was therapeutic experience.  I felt like I was home.  Everyone misses Grace, and Ken and me.  Everyone, and mean everyone commented on the amazing art donations that came from the love of Grace.  It has truly uplifted the clinic.  We continue to collect art supplies, toys and dvd's for the hospital.  It's amazing what is needed.

We made it through Halloween. It is the beginning of "Holiday Season".  We have a few more to go and I know each will get worse, until we reach her birthday on December 30.  I keep looking through photos from last year and how fantastic she was. Grace was of course Minnie Mouse and loved every second of being able to eat any type of chocolate that was handed to her.  

We thank you all for the continued love and support.  This wound will never heal and we appreciate everyone trying to ease our pain.
God Bless!

Posted on October 19, 2017

Posted on October 19, 2017

Thursday October 19, 2017
We are having trouble with the youcaring site recently.  It isn't searchable for Grace's name and it won't let me post to subscribers. I'm in the process of trying to get it fixed.  You can always search directly at www.youcaring.com/graceskuches
I hope to send a full update on us soon.

Posted on October 2, 2017

Posted on October 2, 2017

Sunday October 1, 2017

The month of Gold is almost gone and pink will be plastering our lives. Everywhere. Now I’m not taking away from breast cancer survivors and angels. I just want to put something into perspective. The NIH budget is 32.3 billion for research. In 2016, $656 million was budgeted and spent on breast cancer research. In 2016, $151 million was spent on just childhood leukemia, $37 million on neuroblastoma, and $351 million on all other pediatric cancers. That is a total of $539 million for all pediatric cancers. There are many types of pediatric leukemia, like CML, CLL, ALL, AML and all the subtypes of rarer forms.  There are at least 10 different types of brain tumors that are only occur in children. We are taking about $539 million being split between 100 or more types and subtypes of cancers that ONLY OCCUR IN CHILDREN. Now this is only federal government invested money, so who knows how much will be cut in the coming years with our current president.  Childhood Cancer isn't on his radar because the white house is lit up in pink lights tonight.  For 30 days, no gold lights for our nations children.

We have lemonade stands and tee shirt boosters to raise money and awareness for our kids.  And we are the richest, most powerful nation in the world? Childhood Cancer awareness is truly a grassroots campaign.  We soldier on with our warriors and angels and get the word out and beg for funding.  

The wish list for the Art Studio at Columbia is over.  Over 230 people donated over 1100 art items spending well over $5000.... All for the love of Grace! Thank you!! We spoke with the art director today.  It was very hard for her and the volunteers to be receiving all these gifts as they were grieving the loss of Grace. The director tried to explain to me that she was so happy to be receiving all these amazing items, but she mourning Grace. How could she feel 2 polar opposite feelings at the same time? I told her that it was the power of Grace's love and to accept the love and pass the love on.  

Grace's nameplate for her niche has not been done yet.  I went and saw her today.  I love being able to visit her whenever I want. I could sit there all day just talking to her.

I spent this quiet evening looking at old videos going back about a year. She was so happy! My girl loved food! Once she mastered the spoon, she was on her way to pure freedom, shoveling whatever she could in her mouth.  One of my favorites, is her eating oreos right out of the container. I asked her what she was eating and her response: "oreo". Mind you we had da-da, mommy and John-John perfected and that was about it. And she blurts out "oreo".  

John has started art therapy through a bereavement program and he's doing well.  We are fearful that he is going to feel that he needs to make mom and dad happy. He is very comforting when we cry. I just want him to be a kid and not worry about us and all these emotions.  

We placed a large photo of Grace at the top of the stairs. Every time Rose passes that picture of Grace, she says "hi" and waves to Grace.  We have come to talk to Rose about Grace at the picture. Telling her to send kisses to her big sister and she does.

3 weeks and 3 days she is gone. Time doesn't heal. That's a lie. It makes thoughts fade. Memories fade and get blurry. You don’t remember with the clarity you once had. I know families that are at the 1 yr, 2 yr, 5 yr mark. How do they do it? Each day is worse for me. I don’t want the days to pass. September has ended and this is the month my baby has died.
The cards and private messages are slowing down. Soon they will stop. Life moves on for everyone else. I don’t want her to become an anecdotal story for someone. A story in someone’s passing conversation. “My Facebook friend lost her daughter to cancer”. Or “I knew someone who lost their daughter to cancer”.

As we close out September, childhood cancer awareness month, please hold onto my baby. Keep her and all the babies out there fighting and the angels above, close to your heart.  You don't know what tomorrow brings and it's not guaranteed.  

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