“Amazing Grace”

By Becky Jacobs

This is the story of a truly “Amazing Grace”.

Grace Bittner
Grace Bittner

Published February 28, 2014

The Herald

I spoke with her Dad, Cory Bittner today and he told me Grace is in the hospital with a high ever. The cause is unknown. They are praying that it breaks in time for her to have surgery on Monday March, 3rd in order to do a resection on some of the tumor. This “Amazing Grace” is 3 ½ years old and will be 4 in May. She and her family are members of St. John’s Lutheran Church in Dickinson. They all need your prayers and support.

On March 1, 2014 there will be a benefit fundraiser sponsored by Bravehearts for Kids held at the Enchanted Castle Hotel and Tavern in Regent. Bravehearts for Kids is a non-profit corporation that is dedicated to providing support for the ongoing fight against pediatric cancers. The theme is a Mardi Gras Celebration. Social hour and bidding for a silent auction items will begin at 5:00 pm. All you can eat jambalaya and crawfish will be served at 5:30 pm. There will be live music for entertainment. Please wear a Mardi Gras mask to show your support for Grace. There will be prizes and lots of opportunity to help this family.

Please join us in prayers and support for “Amazing Grace” and her family. I hope and pray we will see many of you there. You can call Becky Jacobs at 701-690-3901 for further information or to donate for the silent auction.

The following is taken from Grace’s page at caringbridge.org. You can search Grace Bittner or updates and journal information.

October 21, 2010 Grace was diagnosed with Optic Pathway 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 Children’s’ 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. (3.5×6.4×3.8cm) 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 7.1×4.0x4.2 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 9.3×6.4×6.5 cm. We are now faced with the decision of doing another new chemo or a Resection of the tumor again.

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.

GO GRACE GO!!!

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.

 

 

 

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