Help Baby Grace's Brain Cancer Battle

For: Grace Skuches
Township of Washington, NJ
Organizer: Jennifer Dondero Skuches
of $35,000 goal.
Raised by 322 donors
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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 is currently receiving maintenance chemo. Grace has endured a many setbacks, like a subdural hematoma, shunt revision, and a PICC reinsertion. She is a fighter! Grace has a long road ahead, but we have faith in God that she will survive and thrive. 

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 February 22, 2017

Posted on February 22, 2017

Kenneth Skuches  21 February 2017

Short day at clinic.  Flushed lines and dressing change.  It turns out Grace has rhinovirus.  The nurses, doctors and Jen call it rhinovirus, I call it a cold.  Then again, Jen calls beer, Yuengling or Stella Artois where I call it Bud.  Doctors have their own language so best to learn it.  The good news is Grace will be fine as long as we keep everyone else in the family from getting sick.  

After clinic, Grace had a dentist appointment... having her first cavity filled.  Chemo wrecks havoc on teeth.  Combine that with her doctor pushing feeding at any chance we get in order for her to gain weight (middle of the night) and poor brushing habits by her parents has caused Grace to have a small cavity.  Small enough that they didn't have to drill just "scrub" out the soft spot of the tooth and use a time released fluoride filling to prevent further decay.  The entire process lasted less than five minutes but Gracie screamed the entire time.  She was wrapped in a cocoon and held down.  It was a nightmare!!!!  Dads are supposed to slay dragons with one arm, hold their child with the other all while drinking a Coke.  It was tough to have her go through this ordeal and Dad being the one holding her down.  The good news was the moment she was done, she forgave and forgot and held me tightly.  A great feeling!

Since Jen will never say this, I will...  My wife, Gracie's mother is the most amazing person I have ever met.  Grace is alive today because of Jennifer. She spends countless hours researching protocols, clinical studies, genetics and just about everything you can image about Gracie's cancer.  She can have an intelligent argument with doctors, fight battles and quote studies.  She has done this while being a mother to two other children and the most incredible wife possible.  Our family is blessed!  With everything going on we are very fortunate!  Thank you Jennifer!

God bless!

Posted on February 17, 2017

Posted on February 17, 2017

Kenneth Skuches  16 February 2017

Nothing new resulting from tumor board.  We are in a good place right now!!!!  Thanks to all for your kind words, support and many comments appreciating my postings.  With all the comments, I took a second glance this morning at what I wrote.  Ugh!  I really need to to proofread my posts.  My good friend and old boss, Ron Hansen would not tolerate laziness and half-hearted work.  There is no excuse for such poor grammar.  So... to my friends Mandy Scarpula, Sian Roberts, Louise Scaffidi, my lovely Mother in Law and her best  friends, Uncle Frank, my mother who taught me better, and the many more of you who have dedicated your lives to teaching others I promise to do a much better job with my postings.  You must cringe as you work your way through these updates.  

We have a long weekend ahead of us and we plan to spend it together, enjoying Gacie's fantastic news!  Grace's next clinic visit is Tuesday.

God Bless!

Posted on February 16, 2017

Posted on February 16, 2017

Kenneth Skuches    15 February 

Good news!  We heard late this afternoon that Grace's MRI is negative.  Tumor board meets tomorrow, Thursday and Grace's MRI will be discussed.  We will wait until after they meet and after Jen reviews the report to see if there are any other area's of concern.  We know there will be emergency issues but there can be something that the doctors want to keep an eye on.  But... for now we celebrate the good news.  

So as you all know, we spent our Valentine's Day at the hospital and surprisingly it was a day filled with love.  After the MRI Grace had a chemo infusion.  Jen and I spent the better part of the day with each other and of course Gracie loves having Mommy and Daddy at her beck and call.  Yesterday was special for several other reasons.  Gracie's first nurse, Michelle came to visit Grace during recovery after her MRI.  I had the chance to visit with another of Gracie's favorite nurses while Grace was inpatient  last year.  We were back with Gracie's current nurse again.  Karen provides Grace with the most amazing care each and every week!  She knows Grace mood as we, her parents do and can immediately tell when Grace is out of sorts.  Finally, one of Gracie's first Doctors, Lenat was at clinic and we had the chance to catch up.  It ended up being a great day with lots of people who truly love Grace stopped by to visit her.  Finally, there is a gentleman who sings to the children in clinic on Tuesdays and it's always a pleasure to catch up with him when our paths cross.  

When Jen and I are at clinic together, it always amazing to see how many people miss seeing her on that weekly visit.  As horrible as hospital/clinic visits can be we are truly surrounded by a second family who are with us during this nightmare!  Again, no way to thank everyone!  

Our car spent the full day in the valet and no money missing!  

Speaking of cars... We recently purchased a used Toyota Sequoia.  With three kiddies we need the third row and there is no way we are buying a mini-van.  Matter of fact, we don't say that word in our house.  The words soccer and mini-van are considered potty words and they are never to be spoken in the house.  Kind of like Ramesses removing any reference to Moses.  Well, we had an ice storm this past weekend.  I thought it necessary to teach Grace the importance of gaining gaining control of the car after spinning out in the ice.  A valuable lesson, if not now but down the road.  WHAT WAS TOYOTA THINKING !!!!  When the wheels start to spin, the vehicle sounds a warning chime.  WHY???  I'm driving, I know the car is starting to slide.  The soul purpose of this chime is alert Jennifer who immediately tells me to slow down!  Horrible move Toyota!!!!  At some point we will be buying a newer Sequoia... let's hope Toyota as solved this issue or else it could be a deal breaker!

Happy delayed Valentines to all and thank you to all those who contacted us asking for is we heard and update yesterday and offered prayers and well wishes.  Prayers mean everything to us and we truly believe it has made a difference in Grace health!  We are truly blessed!  

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