July 2021

Taking advantage of a few days out of the hospital, Grace got to go paint pottery at a local craft shop. She chose the brightest colors to paint her plate and had fun looking all the ceramics to paint. 

Coworkers at Carrie's job sent Grace a very special delivery: live Painted Lady butterfly larvae to raise and release. Grace was so excited to see them and read up on how to properly care for them in the weeks to come.  

Grace's hair had started to regrow the month she was out for surgery recovery. After restarting chemo in June, he hair was gone again by early July. 

Grace wasn't excited to be back so soon for more chemo or to spend the holiday in the hospital. Carrie purchased paper lanterns and electric lights, decorated the room with streamers, and brought Grace's favorite cotton candy and party pops to share with her other cancer friends in-patient with her. 

After only a few days home, we were back for a neutropenic fever and for high dose antibiotics. During her stay, Grace kept busy painting and doing crafts. She was also gifted a Cancer Barbie. She laughed when they opened the box with her because it's so strange to see a Barbie without her long hair and a wig.

Grace's butterflies were ready to be set free. We waited for a warm and calm weather day to release them. In her cute tube dress and sun hat (with her hydration pump hooked up) she gently carried them to our front flower garden.

Grace received blood products often because chemo almost always made her red and white blood cell counts drop below safe levels. Sometimes she would get chemo then her counts would drop in-patient. 

Grace worked with her music therapist to compose and sing her own cancer song she called "Realization" about what it is like to be diagnosed and live with cancer.

Carrie made Grace's song into a lyric video to commemorate the anniversary of her passing, birthday, and September's pediatric cancer awareness month. After her first thoracic lung surgery to remove cancer in her lungs Grace struggled for breath control, but still enjoyed singing even though she struggled. She worked on the song over a year before it was completed in 2022.

Grace had a lunch date with her friend Amber and her surprise Hermes vintage butterfly scarf Carrie ordered arrived. It was so late that the seller sent another scarf for Carrie (Amber in this photo) to wear too. 

Grace couldn't wait to get her wound vac and dressing removed and to let her skin breath so the dressings would stop being so "itchy". She was a little shocked by how long her scar was, and Dr. McGarry assured her it looked great and was normal for her procedure. Later Grace would call her scar her "beauty mark".

During treatment and throughout her surgery recovery, Grace napped often and loved nothing more than to be comfy in her super cozy bed (with extra padding) napping the afternoon away. Then she would wake up hungry and ready for dinner.

Going through cancer during the COVID pandemic was a challenge. Carrie learned that C-Diff can be carried from the hospital too and started packing in hard case roller coolers. Due to Grace's fragile skin, she packed soft towels, blankets and creature comforts from home to make Grace's in-patient stays more comfortable. 

During the pandemic, the hospital ran out of betadine swabs and the skin barrier Grace needed. Carrie bought her own online and carried a standby port access kit with everything Grace needed to protect her skin for chemo treatments. 

As a fun day out, Carrie took Grace to the new Lindt Chocolate store at the Gretna Outlet Mall. She signed up for a membership and stocked up on her favorite gels and chocolate truffles.

As a chicken fan, Grace grew to love and prefer farm fresh, free range eggs. She enjoyed driving out to Valley, NE to buy them and see all the chickens. Carrie taught her how to use a pasta machine and how to make cavatelli pasta by hand.  

When Grace found out about the Mexican Bakery she couldn't wait to try it. She went "ham" as she would say and tried every sweet treat and bread you could imagine. 

Blood labs came back with low platelet counts (which happens with chemo) and Grace needed a platelet transfusion. She was not feeling the best during her infusion. 

Grace was so excited to receive such a LARGE and expensive gift from Bags of Fun in Omaha. She had so much fun opening a gift put together just for her and things she likes. There were comfort items, pour painting supplies, a tablet, and so too many fun things to mention. 

Big bear was a home care item to help support Grace's left arm and back while in bed at home. She liked it so much she asked if we could take him to chemo (of course). You should have seen the nurses on the pediatrics floor when she came rolling up in her wheelchair with a bear almost as tall as she was. Many awesome naps were had.

Grace hated cisplatin chemo. We called it "mean pee" and "the yellow devil", this treatment always made her very sick and caused her kidneys to ache (she received extra hydration and sodium bicarb in her IV fluids to protect her kidneys from damage).

After having abdominal pain during her last chemo, we were back to make sure her belly was ok. Pain medications slowed her GI system down and caused discomfort. Consults with the team at UNMC helped us get her on the right stool softeners and belly care pre-and post chemo so her pain meds wouldn't cause such an upset. 

Grace had her tumor removed (we called Frank), her arm replaced with a prosthetic form her shoulder to her elbow and lost her rotator cuff muscles to cancer. The procedure took nine hours and doctors ran several pathology results to make sure Dr. McGarry had clean margins (no evidence of cancer) before building her bespoke prosthetic. 

While recovery is long (almost 3 weeks in-patient), limb salvage surgery was a success. Grace is able to regain sensation in her hand within days after her procedure. We later find she has 100% sensation in her left arm from her elbow to her fingertips without any loss of sensation. She lost mobility and the ability to raise or lift her left arm. 

After receiving so many gifts from family and friends during her stay after her LSS surgery, Grace started to gift other kids her gifts. She gave her big bunny to a transplant child who came all the way to Nebraska from Houston, TX. His mom said he was so happy to get her gift. 

Grace's surgery site was a long scar from her shoulder to her elbow and required a wound vac to enable healing and prevent infection. Carrie had to learn how to care for Grace after she was discharged and used liquid head packs (unactivated) to provide Grace with some comfort and relieve pressure on her shoulder and back post-op.

Grace couldn't wait to be home and out of the  hospital away from the noisy machines, and stiff beds to her soft and snuggly bed at home. She made the pull-out sofa her day bed then transitioned to her real bed at night. This picture says it all. It felt amazing to be home.

Grace's skin didn't like the antibacterial CHG prep and dressing adhesives. In late March she developed a serious skin rash (dermatitis) and needed special care with the wound team to treat and heal her skin. Carrie was trained on betadine and sterile saline prep with skin barriers and adhesive removers to gently remove dressings without tearing Grace's skin.

Grace was admitted with gauze dressings for chemo due to her fragile skin (this is not typical as a sterline environment is required). Grace as upbeat though and had enough sass to give me a silly face before her infusion began. 

Determined not to let cancer spoil Easter, Carrie surprised Grace with an egg hunt in her room and gave her bunny ears, Peeps, and her favorite snacks. She enjoyed finding eggs from her bed and opening the ones with money!

Grace was admitted for more chemo and was not feeling great. Chemo is taking it's toll with mouth sores that make it really hard for Grace to eat or drink without pain. While she slept, Carrie visited the gift shop looking for something to cheer Grace up. She found llama bandages and Grace had a blast giving them to her nurses and putting them on her forehead like a sticker. 

Grace was so surprised to come home to an entire case of Moosh-Moosh Plushies from our friends. She fell in love with a cow named Clara with colored spots. She decided to take the box to her next chemo in-patient to share the rest with her fellow pediatric cancer friends. 

Friends at Rent the Chicken surprised Grace with 5 baby chicks for her to play with and chicken sit over the weekend before heading back for more chemo. Grace fell absolutely in love with the little fluffy babies and became a chicken lover with the first cheep. 

As a homebound student, Grace's teacher visits her several times each week to help her stay on top of her classes. We were so surprised to learn she received awards for each of her semesters. 

Spending so much time in the hospital, when Grace was discharged from her last chemo-it seemed all the sudden spring was here. The ornamental pear trees were in full bloom and we stopped on our way to take Grace to the park to swing. 

If Grace had a favorite food, it was tacos! She LOVED her mom's tacos and begged to eat them every time she was out of the hospital. This late day in April Grace was enjoying the warm weather and eating outside.

The first day of the month was BUSY with so many tests. Her doctors wanted all her baseline tests completed to make sure her heart and hearing were healthy for her to begin chemo. Grace (who hates needles) did great getting her first IV injection for the contrast dye. 

Grace and Carrie LOVED seeing all the bright and colorful Chihuly Glass in the Healing Garden of the Buffet Cancer Center. She also met her oncologist, Dr, Don Coutler for the first time to set her appointment to receive her chemo port and to begin chemo prior to having her limb salvage surgery (LSS) in May. 

Grace's CT scans reveal the size and magnitude of her tumor. The lesion extended up to 5" beyond her shoulder. Doctors confirm the results and share with us her left arm will have to be replaced with a prosthetic the length of her shoulder socket to her elbow and her rotator cuff muscles front/back will have to be removed due to the cancer. 

On the way into the hospital to get her port placed, we passed the UNMC gift shop. Grace spotted a bright yellow duck and asked if she could have to take with her on her appointment to preop. Not only did duck go to pre-op with her, he got to stay with her as she went to the operating room. While there the doctors and nurses made him an official doctor and dressed in scrubs and hospital attire. 

Grace who enjoys singing got a special visit by the UNMC music therapist to help ease her stress and anxiety in getting her first dose of Doxorubicin and Cisplatin chemo. She began her song list with John Legend's "All of me"- one of her favorites. 

Grace had adverisions to chemo and it really upset her stomach and gave her nausea. To combat the challenges with her treatments, her team gave her medicine to help her sleep through treatments. They also scheduled her chemo to begin at midnight so she could recover during the daytime hours.  

Grace had adverisions to chemo and it really upset her stomach and gave her nausea. To combat the challenges with her treatments, her team gave her medicine to help her sleep through treatments. They also scheduled her chemo to begin at midnight so she could recover during the daytime hours.  

Grace started losing her hair about a week after her first dose of chemo. In an effort to reduce the shock of losing her hair in long strands, she asked to have it cut into a cute bob. The change from such long hair to short was a little shocking at first, but she actually liked not having to brush such long and tangled hair and the ease of a shorter style.  

By the time Grace was admitted for her next chemo appointment, she had lost most of hair (she asked to have it shaved before all her hair fell out because it was so messy and itchy on her clothes and bedding). She was in good spirits for her next chemo appointment, but chemo was never easy for Grace or her stomach. As the month progressed, Grace contracted C-Diff and had to take bitter liquid antibiotics and chase it with her favorite buttercream frosting. 

Grace was referred to Dr. Sean McCarry at UNMC. He is one of the few ortho surgeons that performs limb salvage procedures and works with bone cancer patients. In our consult, we found Grace had a large tumor the width of her left shoulder socket and she would need a biopsy to determine the type of sarcoma she had. She had a CT of her lungs that day as well, and to our relief her lungs were clear and free of cancer. 

Grace had her biopsy early in the morning and she is NOT a morning person. Getting her up for her procedure was a challenge, but we made our appointment in time. The procedure went quickly and we learned her cancer was a high-grade G3 osteosarcoma tumor and not Ewing's Sarcoma. She recovered well from her procedure and was pampered at home for a few weeks as she healed.

Carrie doted on Grace during her biopsy recovery at home. Grace ate her favorite meals in bed, ate homemade baked treats, watched movies on the pull out sofa, ate treats and her favorite foods while cuddled up with Harley. 

Grace was gifted a full acrylic painting set by friends and family and began painting to help reduce stress leading into the weeks she would receive her chemo port and begin chemo. She and Carrie set up easels on the dining table and played her favorite Christian Music while they both did their best to try to not think about Grace's cancer and upcoming appointments. 

Grace waited for months for the grand opening day for Hurts Donuts last fall. We got her the special t-shirt so she could avoid the long lines and go right to the register to get her favorite "raised glazed" donuts by the dozen! She loved wearing the bright shirt with leggings.

Our closest family and friends wanted to support Grace and encourage her in her cancer journey. Gifts started pouring in from all over the state. She got a fuzzy robe, painting supplies, her favorite snacks and treats and her favorite pastries on speed dial. 

As an asthmatic and eczema sufferer, we opt to continue to keep Grace home as a remote learner until we know it's safe for her attend in-person classes. She attends all her class remotely via Google Meet and enjoys working with me from home. We eat breakfast together and then meet up again for lunch and we LOVE it. 

Grace loved to bake and during COVID when we were still trying to isolate, she spent a lot of time perfecting her favorite French pastries: pate choux, madelines, meringues, and macarons. Her baked goodies were loved by all our neighbors and friends because she always baked enough to share.

Grace adore winter and especially liked it when they cancelled classes due to snowy weather. Our neighborhood looked like a wintery wonderland and Grace suited up first thing to to play with the neighbor kids in the first "fluff" as she used to call it. 

Grace eating her favorite bacon and not willing to share with our little dog, Harley. We didn't buy bacon much during the pandemic, due to expense-so it was a special treat.

Grace enjoyed making homemade butter and almond milk during the pandemic. We made large batches in our KitchenAid mixer and whipped with honey for our pancakes. 

Grace was doing a "hold a plank" challenge for her PE class and felt something. Thinking she just sprained it from inactivity, we iced it and gave her some Motrin. The site didn't bruise or swell and a few days later she said it was hurting so we took her to Nebraska Ortho for x-rays and have it checked.