GRACE’s Story

Site created on October 22, 2010

October 20, 2010 Grace was diagnosed with Optic Pathway/Hypothalamic Glioma.  She started chemotherapy immediately to try to shrink the the brain tumor.  It was confirmed she has a Juvenile Pilocytic Astrocytoma with pilomyxoid characteristics. 

Grace has two older brothers, Grant and Owen, who have unending love for their sister.  God has truly blessed our family and friends with this sweet little miracle girl with the longest eyelashes you will ever see.  

On October 20, 2010 we made the trek to University of Minnesota Amplatz Childrens' Hospital to have the eye appt. and MRI. Well, that is when they found the "lesion" brain tumor on the left temporal part of her brain. (3.5x6.4x3.8cm) They diagnosed it as an Optic Pathway Glioma.  Grace was 4 1/2 months old. 
We were admitted to the hospital right way and started on the steroid Decadron. Because of her small size (diencephalic syndrome) and the size of the tumor, they felt this was needed to help her body handle the stress the chemo would put on her. On the 22nd, her single lumen Hickman Port was inserted and that night she got her 1st dose of chemo. Her 1st protocol was Carboplatin/Vincristine. She got 6 weeks of this before going back for another MRI.

Unfortunately, the MRI showed *) the tumor has grown in width and height 7.1x4.0x4.2 cm*) that has in turn affected the fluid in the ventricles, what appeared to be blockage (hydrocephalus) ; *) there was also a black cavity in the middle of the tumor, which was dead tumor tissue.

Dec. 1, 2010..a surgery was done to place a VP Shunt on the front temporal right side of the brain. It appeared after surgery that her right side was affected by surgery, as she became limp in her movements. It seemed to be more because of the pressure on the left side of the brain causing weakness on the right side of her body and possibly some pain from the shunt because a lot of the fluid is on that side.

 Dec. 3, 2010..a Biopsy and a Left Temporal Craniotomy Partial Resection surgery were done.  The pathology report on the biopsy was a Juvenile Pilocytic Astrocytoma with Pylomixoid characteristics. She recovered in the hospital for 17 days with different complications along the way Seizure activity, blood pressure issues, sodium issues, etc. She did physical and OT therapies at the U of M for 2 weeks for her right sided weakness and tightness throughout her body. We stayed at the Ronald McDonald House and weren't able to see our boys for 5 weeks b/c of winter storms and weather, so they weren't able to travel. We spend Christmas together in MN though!

January 2011 MRI was done and showed the tumor had already filled in to most spots where the tumor had been resected. We started on Avastin/Irinotecan protocol.
She also was weaned from Decadron and started on a daily Hydrocortisone dose because her adrenal glands weren't yet able to function on their own.
February 2011 only after 3 infusions, we had to stop the chemo b/c her shunt needed revising, and b/c of bleeding issues b/c of Avastin, we had to wait a few weeks from her last infusion to get that done.
March 2011 She had her shunt revised
April 2011- She had a G-J Tube placed to take all the meds that she was on. She was vomiting all the time after meds, and sometimes we couldn't even get them in, so this is the route we needed to take. She was taking Bactrim, Supprax, Keppra, Hydrocortisone, Amlodopine, Prevacid, Synthroid, Zofran. It seemed like our entire day was spent trying to get her to take her meds. Of course by this time, she had started having oral aversions to everything.

April 2011-August 2011 she was on the Carboplatin, Vincristine, Temodar, scanning after each cycle. No big changes to the tumor. When doing her Carbo/Vinc infusions, we had to do them in the hospital b/c she needed to be on fluids with all her nausea and vomiting. Typically we would have a 2 night stay with every infusion.
June 2011- We started doing overnight continuous feedings into her J-tube to help her gain some weight because she was holding steady at 16 lbs. Her only form of nutrition was being breastfed (she wouldn't take a bottle)           September 2011 we added continuous feedings into her J-tube during her naptimes.

August 2011-January 2012- The doctor wasn't happy that the Carb/Vinc/Tem didn't do much for the tumor, so we decided to give Avastin/Irinotecan another shot. With these 2 chemo drugs she had major cramping issues and diarrhea, which they would give her Atropine to help. We were able to stop doing the infusions in the hospital in November and switched to in clinic.
February 2012 The scans have shown less enhancement and very little shrinkage, but with how crummy Grace felt all the time, our Dr. suggested just trying Avastin alone for awhile to help Grace make some gains in her development and give her a better quality of life. What a difference taking Irinotecan away made!!
August 2012 It had been 1 year since starting Avastin, so it was time to make our next decision since our Dr. didn't want to do any more doses of this drug. The tumor remains stable, not really shrinking, but not growing. He gave us 3 options: TPCV, Vinblastine or Venrelobine, or take a break. (She was on chemo for 22 months, 48 treatments, no major shrinkage, just less enhancement). We decided to TAKE THE BREAK!!

January 2013-- MRI showed the tumor is growing again :(  We decided to try Avastin/Irinotecan again since she had a decent quality of life on it and we necessarily didn't see shrinkage, but we would see less enhancement. She had a PORT-a-cath surgery to have a PORT placed this time to receive her chemo treatments.  She needed to do an overnight stay in the hospital because of nausea and needed the extra fluids because of sodium issues. 

October 2013 -- MRI showed there was slight growth. We decided to start Vinblastine a weekly infusion.

December 2013-- Ventricles were showing enlargement on the past few MRI's so we decided to do a Shunt Revision Surgery, and the Valve wasn't working.

February 2014 -- Requested scans a month earlier than our scheduled appointment because Grace has regressed and seems to have lost some vision, most of the strength in her right side, stopped taking anything orally, and is very fatigued.  MRI shows growth 9.3x6.4x6.5 cm.  We are now faced with the decision of doing another new chemo or a Resection of the tumor again. 

Grace started showing signs of regression by getting more weakness in her right side, sleeping excessively, slowly losing her vision and most recently high body temperatures.

March 3, 2014 - 3 years and 3 months to the day after her last re-section surgery.  Dr. Haines and Dr. Guillame performed a 13 hour de-bulking surgery.  They were able to resect a substantial amount, however; a lot of tumor still remains.  She will now spend time recovering and healing and coming up with a future plan.

We are so thankful for all the family and friends who have followed us on our journey and those of you who are just catching up.  We couldn't do it with all your love and support and all the prayer warriors for Grace and our family.  She is such a miracle and a huge blessing and we are grateful for each day that we are able to see her smile.  She is our "AMAZING" GRACE. 


Proverbs 3:5-6     Trust in the LORD ( with all your heart and lean not on your own understanding;    in all your ways acknowledge him, and he will make your paths ( straight. ( (  

 Isaiah 41:10  fear not, for I am with you;  be not dismayed, for I am your God; I will strengthen you, I will help you,  I will uphold you with my righteous right hand.

Newest Update

Journal entry by CORY BITTNER

Hey Grace supporters -

Well, we continue to be humbled and blessed  by the enormous outpouring of love and support for Grace.  We continue to receive letters and cards, beautiful and encouraging words, and people showing us their love for Grace with incredible ideas and memorials. 

First, I want to tell story of how Grace has continued to be a part of my life already.  I have heard many people tell me that my eulogy was so good, well Thank You!  But what people don't know is Grace was part of it.  The first night I put the pen to paper as I began writing my ideas, I had eventually finished and began to pray to Grace.  Of course and as usual, I fell asleep with my head resting on her bed, just like always:)  I was awoken by a girls voice in my head that said to me, "I do not think that is a good idea."  All I could think about was Grace talking to me.  So the next morning I woke up and started jotting down a different layout of what I was going to do for the eulogy.  In the end, my eulogy was a version of that second draft.  I know for a fact, it was a better eulogy than the path I was going down originally.  I was awestruck by what had taken place, but truly I know Grace was a part of the plan and helped me through my entire eulogy. 

Second, we have been visiting Grace's gravesite at the Dickinson Cemetery every morning and evening since Friday.  What is incredible is the amount of people that have visited her as well. Andrea and I have been sent pictures and messages of people that have stopped to see her.  We have also come each day and new surprises and gifts have been placed by her.  She has accumulated a couple butterflies and solar lights of an angel, cross and rose, some flowers and from Owen, a big Caribou straw that she liked, so she can drink:)

We continue to mourn our loss of Grace, but also we find comfort in knowing and hearing the stories of the lives Grace has inspired or impacted. The stories of one of her best friends from kindergarten going to talk with her and another friend who left her a special note, which is so heartwarming. Grace was left a cup of her own water with a green straw from two special people who will never forget her water ever again.  Grace had some beautiful purple flowers there one morning  and we still aren't sure where those magically appeared from, but they are fitting with a purple bow.  And my guess is there have been other visitors as well that just wanted to pay their respects.  Thank you all. Andrea gets sad when she thinks of Grace all alone, so she it gives her some peace knowing Grace has visitors.

Now for some happenings to honor Grace.  Bakken BBQ and Make-A-Wish contacted me Monday as the Bakken BBQ was presenting their very gracious check to Make-A-Wish.  They asked if we would attend as they wanted to present the check in honor of Grace.  Remember Grace had received a Wish in early 2015 and went to Disney World to play and dance with Princess Belle for over 2 hours.  It was one of her best moments and she did the whole trip during her time when she was completely blind, just amazing.  We are so thankful and were honored to be present for Grace. 

Next, we received a message from a teacher walking the halls at Lincoln Elementary.  They had repainted the walls in different colors for the different wings of the building.  One of the wings was painted in Grace's colors with purple and gray to honor Grace.  This was so touching when we were sent the video.  In addition, Lincoln will be planting a tree on their property in honor of Grace next month.  This will be a great remembrance of Grace's impact on so many kids and teachers in her short 3 years attending school. 

Next, we were contacted by the Badlands Bigsticks general manager for an upcoming night to honor Grace.  Next Wednesday, July 24, at the Badlands Bigsticks baseball game, it will be Go Grace Go night which is also planned in conjunction with the Dickinson Diamonds youth softball club night.  Grace will be honored by having all the baseball players wearing Go Grace Go jerseys which will be auctioned off during the night with all proceeds going to the Go Grace Go Memorial Fund and the Dickinson Diamonds softball club.  In addition, Grace's brothers will throw out the first pitch in honor of Grace.  I am sure Badlands Bigsticks will have more details to come about this night soon.  We hope to see many of her supporters fill the stands with your awesome Go Grace Go apparel when you come out. 

As you read some of these stories, there are many wonderful reasons why we feel so, so blessed and overwhelmed with emotions for the outpouring of support in honor of Grace.  You know, sometimes we felt like we were actually in the presence of a superhuman when we were with Grace, but at the same time she was just our gentle, calm and loving child.  We could sense the impact she was having on others while she was living, and now we are feeling that impact even greater and in a different way, so amazing and grateful, but she is greatly and deeply missed. We appreciate your continued prayers .

Go Grace Go!!
The Bittners.
Patients and caregivers love hearing from you; add a comment to show your support.
Can you help power GRACE's site?

A $30 donation powers a site like GRACE's for one month. Help keep CaringBridge online for them and for you.

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser
Support Links
Helpful Tasks