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. 

GO GRACE GO!!!

Proverbs 3:5-6     Trust in the LORD (http://www.biblestudytools.com/proverbs/passage.aspx?q=Proverbs+3:5-6#cr-descriptionAnchor-1) with all your heart and lean not on your own understanding;    in all your ways acknowledge him, and he will make your paths (http://www.biblestudytools.com/proverbs/passage.aspx?q=Proverbs+3:5-6#cr-descriptionAnchor-2) straight. (http://www.biblestudytools.com/proverbs/passage.aspx?q=Proverbs+3:5-6#fn-descriptionAnchor-a) (http://www.biblestudytools.com/proverbs/passage.aspx?q=Proverbs+3:5-6#cr-descriptionAnchor-3)  

 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

July 7, 2019 was that last morning we held Grace in our arms.  It’s been two months, but when you think about wanting to hold her again and what it felt like, it feels like eternity.

The void is tremendous, the days are short but long, the noise is silent, the daily paths are different, and lives have changed since that day.  What is a normal day supposed to be? 

Even though the many day-to-day tasks, challenges and tired evenings are gone, they are deeply missed, because it meant that we would still be taking care of Grace and in survival-mode for our little girl and that is something that does not go away easily at all. 

People ask me, how's it been?  I might ask, do you want the 2 second answer or the 2 minute answer or the 22 minute answer. There is not a very easy way to tell somebody because the way I am coping does not even justify the depths of what Andrea is going through as a Mom who lost her sidekick and best friend.  The one thing I will tell you though, please ask, we want you to.  “Acknowledgment goes a long, long way to help ease the burden of grief. Acknowledgment and validation are GIFTS to the grieving.”

Most days include a trip or two to visit Grace at the cemetery.  We have had some picnic dinners and lunches, card nights and many nights just sitting at the cemetery by Grace’s grave and looking at the sky.  Those nights we have watched the clouds, watched the sun set, watched our boys live without their sister and sometimes just sat there because we can’t focus on anything else besides wanting to be near her in someway. 

The prayers, support and appreciation that people have had for Grace and our family still continues to amaze us every day.  I would guess that we did what all parents would have done these last 9 years, but for some reason people have told us Grace was different. Grace gave them meaning and purpose, hope and strength, bravery and determination, she never gave up and others didn’t want to either.

The stories had been endless from people that met Grace and even people that never got to cross her path but have just heard or read about her life.  We have received cards and letters from so many people, thank you for all the encouraging words.  Some of you have explained in depth what Grace meant to you and how she changed your lives and those are such a gift to us.  

Grace's impact on so many people is hard to grapple with when she is not in our arms.  Many days we wish we could hold her again, smell her hair, listen to her sweet, soft voice, help her see or walk, play games, watch her rip magazines, tickets, construction paper, do stickers, want to color, stack cups, feel what we are holding, ask what we are doing or just be put in our place because we knew she was always the wise one of the family. 

But I think one of the toughest parts is that as time is passing by, we don’t have pictures or stories to share, so we don't hear as much about Grace and we wonder if she has been forgotten, not only by others but even in our own daily lives.  Andrea even mentioned one day if we think about Grace anymore, because we all come and go with work, school and activities... so that might tell you how tough things have been, especially for her. We have always lived in “Grace Pace”, and sometimes we might need to be reminded to not miss the simple things that Grace showed us everyday. We miss her presence and the way she completed our family. Her beautiful, loving spirit was a light in each of our days and that is a huge part of the emptiness in our home.

Milestones are difficult and will continue to be. Grace would have started 2nd grade this year. That day was extremely difficult. Her School, Lincoln Elementary, planted a tree in her Memory. We are extremely grateful for that gift and know she is always remembered and loved at one of her favorite places.

There is a new sign in our house that we received as a gift, it reads "Because someone we love is in heaven, there's a little bit of heaven in our home."  We know that Grace will always be a part of us and believe she is somehow watching over us, but it doesn't make it all easier.  We are learning something new and it sometimes seems impossible for the extreme sadness and grief we feel to ever diminish or decrease; however, the Lord is our hope and our our salvation, and he can turn our mourning into comfort. with God's grace and mercy, I would suppose we will be okay.

Go Grace Go!!
The Bittners.
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