- September 25-27, 2023- Grace's Final Days

- Monday-Tuesday 9/25-26- Grace Makes Final Plans

- Wednesday 9/27- Grace Lost Her 3 Year Battle with Cancer and Passes at Home at 3:57 pm

In the days leading up to her passing Grace ate her favorite foods (cinnamon roll, Nutella, Christmas spritz cookies and her favorite treats), was anointed and blessed by her home care pastor, had lots of cuddle time with Snickerdoodle and her mom, watched Baby Groot on Disney+, and planned a six year gift for her mother with the help of her hospice volunteers, aunt Hollie and neighbor.

- Wednesday 9/27- Grace Lost Her 3 Year Battle with Cancer and Passes at Home at 3:57 pm

Grace's cancer spread to her spine and the nodules in her lungs continued to grow despite cryoablation for her lungs and 10 high dose cycles of radiation this year. She passed peacefully at home with her mother Carrie and service dog Snickerdoodle September 27, 2023.

Grace's Special Service Preparations

- Wednesday 9/27- Grace Lost Her 3 Year Battle with Cancer and Passes at Home at 3:57 pm

Grace's Special Service Preparations

Grace's celebration of life service planning was in process while Grace was still with us. She helped her mom plan the details of her funeral and shared her plans for her favorite flowers and music. Her mother worked with family and friends to make her day special. Her casket was handmade from Trappist Caskets in Iowa and blessed by the monks there, her flowers were donated from around the country, her favorite Christian music was thoughtfully chosen for her day, and the thousands of cards, letters and gifts she received throughout her fight were on display.

- September 2023 -Vala's

Grace FINALLY Tried a Twister Potato

After years of seeing these delicious potatoes on YouTube, Grace finally had one to try and she LOVED it.

Go Grace Go

Grace FINALLY Tried a Twister Potato

Grace had a blast zooming around the farm in her brand now electric wheelchair. It was so awesome at going up big hills and motoring on gravel paths. She was hard to keep up with even with oxygen, nothing slowed her down.

Delicious Foodie Delights

Grace FINALLY Tried a Twister Potato

Delicious Foodie Delights

Grace tried EVERY food at Vala's this year. One of her favorites were the sticky buns. She did cute "yummy dance" when she tried them. She also had cider donuts, popcorn, pie, homemade pretzels, a turkey leg, fudge, and homemade fried chicken..

- September 2023 -Grace Turns 15

Cancer in Spine/Lungs is Terminal and Grace's Health Begins to Rapidly Decline

Family Gathered to Celebrate Grace's Birthday AND Christmas Together: We Called it "Gracemas"

Grace and her mom receive news her osteosarcoma has spread uncontrollably and nothing can be done to give her more time or improve her comfort. A second cryoablation is cancelled for her right lung and Grace and her mom make preparations to maximize the weeks she has left. Family and friends rally around Grace to make her 15th birthday very special. Grace won't survive the month.

Family Gathered to Celebrate Grace's Birthday AND Christmas Together: We Called it "Gracemas"

Our family came together to celebrate Grace's 15th birthday September 16th and Christmas together because her health was declining. Our home was full of holiday decorations and cheer.

Carolers Visited Too!

Grace Gets an Electric Scooter for her Birthday

Family friends made the weekend extra special by surprising Grace with holiday carolers complete in costume.

Grace Gets an Electric Scooter for her Birthday

Grace's biggest birthday gift was from her grandparents: a double battery electric wheelchair so she could continue to enjoy every minute of her final days.

- August 2023 -First Lung CryoAblation

Grace is the First Child and Osteosarcoma Patient to Receive Cryoablation for Left Lung at UNMC 8/1

Grace and her mom meet with an interventional radiologist at UNMC to attempt to freeze the nodules in her left lung that are causing her discomfort with breathing. They are told several large nodules cannot be treated near her heart and spine. The surgery provides Grace with a great outcome and her discomfort with breathing is greatly reduced and it was only an overnight hospital stay, which made her very happy. Grace requires 24/7 oxygen support pre- and post-surgery.

Hamilton!!

Grace is the First Child and Osteosarcoma Patient to Receive Cryoablation for Left Lung at UNMC 8/1

Carrie and Grace had orchestra seats to see her favorite broadway musical: Hamilton. We took Snickerdoodle and she also swam with her cousins.

Macaron Masterclass

Grace Transitions Into Palliative and Hospice Care

Endless Journey Hospice came on board with us early August and arranged for Grace to have personal baking lessons from her favorite French Bakery: Grand Patisserie.

Grace Transitions Into Palliative and Hospice Care

Grace and her mom chose to bring on her palliative care and hospice teams early to get to know Grace before her cancer was terminal. Grace has a blast with the team from Endless Journey Hospice. She got massages to help with her pain, music therapy and great nursing care to manage her breathing and pain needs. She maintained a positive outlook and had fun as her energy began to decline. She even made a trip to the hospice office to make cotton candy cakes for the other hospice kids!

- July 2023 - More Radiation for Spine

Radiation for Lumbar Spine + Cancer Nodules Cause Issues

Grace chose to have more high dose radiation for new cancer found in her spine. We know this will not cure her cancer, but we're hoping to give her more time. The nodules in her lungs continue to grow and put pressure on her heart and start to cause discomfort with her breathing.

Jam Making

Radiation for Lumbar Spine + Cancer Nodules Cause Issues

Grace is having a blast picking mulberries and cherries this month to make homemade jam. She has been busy with Carrie selecting neighborhood fruit and visiting friends to pick fresh berries. We should have enough jam to feed an entire army.

Learning to Crochet

Radiation for Lumbar Spine + Cancer Nodules Cause Issues

Learning to Crochet

Grace asked to learn how to crochet and started making bumblebees with mom! She is so good at this, seriously!

Garden Takes Off

Lunch Date with My Jellybean

Learning to Crochet

Grace's garden is growing like crazy. Her herb garden is incredible. We should have basil for months to make her favorite pesto and her tomato plants are growing like crazy.

Lunch Date with My Jellybean

I had a special lunch date with this cutie pie. We both dressed up and headed over to First Watch for her favorite watermelon mixer and fried potato hash.

- JUne 2023 -New spread in Lumbar Spine

Scan Results on Vactosertib Show New Spread to Spine and Grace Begins Radiation Again

Vactosertib is not stopping the spread of Grace's cancer. New scans showed increase in size of her current nodules, new spread in her thoracic spine. Grace elected to not do another surgery for her lungs and stopped taking Vactosertib. In doing so, she knows there is no cure or treatment left for her cancer other than to attempt to slow the spread with more high dose radiation in Nebraska.

Puppy Therapy with Midwest Puppy, LLC

Scan Results on Vactosertib Show New Spread to Spine and Grace Begins Radiation Again

After the hard news at her last scan appointment, Grace and her mom visit a labradoodle breeder to give Grace some much needed play therapy with the puppies.

Grace Spends with Day with Friends at Berry Fest at Nelson Produce Farm

Scan Results on Vactosertib Show New Spread to Spine and Grace Begins Radiation Again

Grace Spends with Day with Friends at Berry Fest at Nelson Produce Farm

Grace enjoyed a fun day on the farm with her closest friends Dhriti and Shuban. The three ate yummy strawberries and treats, had their faces painted (Grace wanted a potato), had a tractor ride, played on the swings and tire mountain and pet all the farm's cute goats and horses.

Sunflower Gifts Come From Around the Globe

Grace Spends with Day with Friends at Berry Fest at Nelson Produce Farm

Carrie asked Grace's followers on social media to send her silk sunflowers to cheer her up after getting some hard news her cancer was continuing to grow while taking Vactosertib. Gifts, cards, flower seeds and silk flowers poured in from all over the country-enough to fill an entire 4' panel full of flowers!

Grace Tries Crawfish Boil

Sunflower Gifts Come From Around the Globe

Grace Tries Crawfish Boil

Grace was a BIG YouTube watcher of all things food. As a self proclaimed foodie, she had been dying to try a real crawfish boil so when one opened up in Omaha, she was itching to go. Grace had a blast using the tools made a proper mess!

- May 2023 -Vactosertib arrives

VACTOSERTIB IS HERE!!

Grace Enjoys Cooking at Home

Grace received her first dose of the breakthrough immunotherapy drug, Vactosertib, May 15th. Vactosertib is a special medicine from South Korea designed to strip aggressive cancer cells of an immunosuppressive protein so the body's own immune system can destroy them. She is the second child in the US to be taking this medicine ahead of a national trial. Our hope is it will be the miracle to finally stop her cancer cells from coming back and spreading.

Learn More

Grace Enjoys Cooking at Home

This summer is the first summer Grace will not be in the hospital and Grace is LOVING cooking all her favorite foods with her mom like pizza!

Grace and Snick Enjoy Spring

Grace Enjoys Cooking at Home

Grace and Snick Enjoy Spring

Grace and Snickerdoodle have a blast playing and hanging out in the outdoor screen tent mom set up for them to shelter from the hot sun and keep mosquitoes out.

- April 2023 -Radiation for Cervical SPine

Grace Gets Targeted Radiation for Her Cervical Spine

Grace continues to receive targeted radiation to control the spread of her cancer in her cervical spine at UNMC in Omaha, NE and completes therapy mid-April.

Team Finds a Potential Miracle Immunotherapy Drug

Grace Gets Targeted Radiation for Her Cervical Spine

Carrie and the team at UNMC found two solid tumor pediatric specialists at the University Hospital Rainbow Babies and Children's Hospital in Cleveland, OH. Dr. Alex Huang is preparing to start a national trial for Vactosertib that breaks down TGF-1 immunosuppression in osteosarcoma cancer cells. The medication is made in South Korea and Grace will start treatment May 8th for "compassionate use" BEFORE the US trial gets started. She is the second child in the US to receive this breakthrough new immunotherapy ahead of the trial and the doctors at UNMC worked with the FDA to bring the medication to Nebraska-just for Grace!

Grace and Snick Celebrate Easter

Grace Gets Targeted Radiation for Her Cervical Spine

Grace and Snick Celebrate Easter

Grace is able to send Easter at home this year and made special plastic eggs full of Snickerdoodle's favorite treats for her to find. Grace learns quickly a poodle breed has an amazing sense of smell and Snick makes quick work finding all her hidden eggs.

- March 2023 -Cancer Is Back and Spreads

New Scan Results Show New Nodules in Lungs and Spread Cervical Spine

New Cancer Spread Makes Grace Ineligible for the Listeria Osteosarcoma Trial in Denver

In new scans after her February thoracic procedure that removed 17 new nodules in her lungs and the lower half of her right lung, Grace's cancer spread less than 4 weeks after surgery. The news was devastating to Grace and her mom.

New Cancer Spread Makes Grace Ineligible for the Listeria Osteosarcoma Trial in Denver

The breakthrough cancer trial at Children's in Denver, CO that Grace and Carrie were so hopeful for her to participate is no longer an option after the news Grace's cancer has returned and spread to a new site in her cervical spine.

Snickerdoodle Comes Home After A Month Away After Grace Had Lung Surgery

After a long wait and recovery from her second lung surgery, Grace and Snickerdoodle were finally reunited March 3rd. The two were inseparable and were incredibly homesick for each other.

Grace Learns How to Make Homemade Mozzarella

Snickerdoodle Comes Home After A Month Away After Grace Had Lung Surgery

As Grace continued to fight her cancer, her mom continued to support her health by cooking clean, organic foods for Grace to keep her strength up. They learned how to make their own cheese from locally produced milk and organic yogurt to maintain Grace's protein needs.

- February 2023 - Lung Surgery and Dior

Thoracic Lung Surgery Removes 17 Cancer Nodules and Lower Lobe of Right Lung 02/15/23

A year to the date of her first thoracic lung surgery, Grace had her second to remove more cancer from lungs. Doctors removed the lower lobe of her right lung in a nine hour procedure because it contained cancer nodules surgeons were unable to reach to remove. Grace spent a week in the PICU and another two weeks in recovery before coming home. Grace said after this surgery she was done and decided to try immunotherapy. She planed to participate in the osteosarcoma listeria trial at Children's in Denver, CO after making a full recovery. Early study patients were showing great promise and Grace was excited to be part of the trial.

Vintage Christian Dior Dress for Early Valentine's Day Gift

Thoracic Lung Surgery Removes 17 Cancer Nodules and Lower Lobe of Right Lung 02/15/23

Grace loved watching the movie "Mrs. Harris Goes to Paris" about a woman who traveled from England to have a couture Dior dress made for her in the 1950s and fell in love with the label's vintage designs. Carrie found a vintage dress in in Grace's favorite color that fit her perfectly. Grace swooned and looked like a model in her dress.

Portraits Done Together By JBloom Photography in Waterloo, NE

Thoracic Lung Surgery Removes 17 Cancer Nodules and Lower Lobe of Right Lung 02/15/23

Portraits Done Together By JBloom Photography in Waterloo, NE

Grace and Carrie had a fun day in the studio with JBloom Photography. Grace was professionally photographed for the first time in her Dior dress and the two had several photos taken together.

- January 2023 - New Lung Cancer Found

Scheduled Scans Show New Metastasis in Lungs 1/10/23

Thrift Shopping Becomes Grace's Favorite Winter Outing

Scheduled Scans Show New Metastasis in Lungs 1/10/23

After taking Cabometyx oral chemo for months to try to keep her cancer at bay, we find new cancer in Grace's lungs. It's a big blow to our family as we struggle to understand how Grace's cancer is so resistant to every chemotherapy she receives. Carrie and Grace's medical team look for osteosarcoma immunotherapy trials for Grace.

Baking Runza's at Home

Thrift Shopping Becomes Grace's Favorite Winter Outing

Scheduled Scans Show New Metastasis in Lungs 1/10/23

Grace LOVED to bake bread and one of her favorite winter foods was to make homemade runza's with sweet Napa Cabbage. her favorite part was eating them-yum!

Thrift Shopping Becomes Grace's Favorite Winter Outing

Carrie introduced Grace to thrift shopping as a way for the two to spend fun time together but to also help Grace explore clothes that made her feel confident with her left arm mobility challenges, disfigurement and scar. She found many adorable outfits that complimented her sassy hair (Cabometyx oral maintenance chemo made her hair gray).