WEST POINT, Ala. – She told her mother a list of things she dreamed of doing someday- mostly family vacation destinations she hoped to experience including the beach. She, along with her mother and two older brothers, was able to feel the sand and the ocean’s waters on her feet. Sadly, it was the first and only family vacation for 4-year-old Maggie Grant of West Point. She is currently at Children’s of Alabama with acute myeloid leukemia (AML), and doctors say they have exhausted all treatment options.
“She is 4 years old and loves everything Disney princesses. She loves everything unicorns. She is HILARIOUS! She will have you rolling, and it is insane,” said Maggie’s mom, Kathryn Grant. “She is just the life of the party when she is able. That’s been one thing that has inspired me and surprised me about this is her attitude and her perseverance and her integrity and her strength through all this. The fact that she has had the most beautiful attitude throughout the entire process. She has never been defiant. They’ve never had to fight her, and she has been through A LOT. When I say a lot, I mean a lot- more than any adult would be able to handle- and never once has she complained or shown any bad or negative attitude. She’s always smiling and always happy and she will light up a room.”
Maggie, daughter of Victor Grant and Kathryn Grant, was only 2 when she suffered from persistent ear infections. While at the hospital for tubes to be implanted into her ears, little Maggie and her family waited for pre-op lab work to be completed.
Her mom explained, “She had been having several ear infections and one day she had a double ear infection, so we had a checkup to see if the antibiotic she had been on had cleared up the infection. The night before that appointment, her face became paralyzed. The next day the pediatrician felt we needed to have imaging done.”
Doctors performed imaging to look for tumors and also considered Bell’s Palsy but had not seen that condition in 2 year olds.
Kathryn continued, “There were no tumors, and they said that she just needed tubes. They ran all the pre-op bloodwork, and everything needed to do the surgery. Somehow it was ordered: a blast count. It was a God thing.”
The blast count was ordered by accident and the results were shocking. “It showed up that she was just eaten up and it was the craziest thing. They kept doing labs to make sure it wasn’t a mistake because we had had no problems and no symptoms of leukemia. I was in nursing school and just accepted a job at Grandview. I would have picked up on that,” said Kathryn.
The day the family thought it would be leaving Children’s after Maggie’s surgery, a team of 15-20 doctors came in to inform Kathryn the family would be staying and would be there for a while. “They gathered around me and told me and told us that we wouldn’t be going home for a long time and that she had cancer and they would be transferring us to 8-Quarterback. We’ve been here ever since, and that was two years ago,” Kathryn said.
8-Quarterback is the Hematology/Oncology- Acute Care Unit at Children’s of Alabama. It has become home for Kathryn and Maggie, with the exception of a brief two-month remission after Maggie’s third birthday. “I just started knowing that it was back, but it took over a month for it to show back up in both her peripheral blood work and in her bone marrow,” Kathryn recalled.
For Maggie, the only life she has known for two years is inside the walls of a hospital. The understanding she has of oncology terms is both impressive and devastating. Said her mom, “It’s unbelievable. The way she would get her chemotherapy is called a port or central line that goes directly into her heart. When the lines aren’t being used, to keep them clear from infection, you have to flush them with saline and then hep-block them. The nurse would be in there flushing her line and Maggie would say, ‘Is that heparin? Are you fixing to hep-lock me or is that just saline?’ You are like, ‘what? You are 4!’”
During her two years at Children’s, Maggie has also experienced the loss of many friends. Kathryn explained, “I think she has two who have not passed away. There have been about 10 of the ones we were close to that have died at this point. That is scary and more so now knowing that she is fixing to become another one.”
Maggie also possesses a sweetness and a kindness that everyone notices. So much so that it has sparked conversations regarding how she worries how her illness has and will continue to affect others once she is gone. The doctors have informed Kathryn that Maggie could only have a few days left here, and Maggie has recently expressed anxiety.
When asked if Maggie had ever asked “Why me?” Kathryn shared, “I’m not sure if it is, ‘Why me?’ as much as it is, ‘I’m scared.’ Yesterday morning, it was 4 in the morning and she was awake, and she asked to turn on a movie and it was a scene she had seen 1,000 times. It was a scene of a girl dying and she said, ‘I don’t want to die’ and that has never been anything even close to what she would say. She has talked so many times about how excited she is to be able to meet Jesus one day and how glorious that will be- what a beautiful and perfect homecoming that will be and no more hurting. That perspective has shifted to almost maybe a little bit of anger and fear. We are working with Child Life to try and make her more at peace again.”
For Kathryn, thinking of Maggie being scared is incredibly difficult. She said, “At this point, anything that will help her not be scared. That haunts me; that is what my nightmares are made of- thinking of her being scared of dying and me not being able to do a thing and her not wanting to let go because of being scared.”
With Maggie and Kathryn being at the hospital, times have been difficult on Maggie’s older brothers, Kyle (8) and Eli (7).Both boys attend West Point Elementary. “Before COVID, they were allowed to go to school in Cullman and if there was an opportunity for them to see her, they would have to completely strip down, shower, put new clothes on, wash hands and not kiss her, those kinds of things. They were able to continue with schooling.” A week and half ago, the decision was made to pull the boys from school so they can be with their sister.
Last year, after a strong round of chemotherapy that the family hoped would work in order to have the opportunity for a bone marrow transplant, doctors allowed Maggie to go home for a couple of days. Maggie asked to go to the beach, and a family in Cullman arranged for the trip.
Kathryn shared, “They arranged for us to go to a private island because she can’t be around people or in public. It was also during the peak of COVID. I left, went home, packed all three kids a suitcase and we took off to the beach. My doctor was irate and did not like the idea due to the risk of exposure.” Within an hour of being at the beach the call came that the chemo did not render the desired results. “That kind of knocked us back and put a monkey wrench in our plans.”
Once they returned, Maggie underwent full body radiation, and the bone marrow transplant was attempted. Maggie’s older brother, Kyle, was her bone marrow donor. “That’s a lot of burden and responsibility that an 8 year old should not have to carry,” said Kathryn.
The bone marrow transplant did not work, and the cancer came back more aggressively than before. “It’s just kind of gone downhill and there’s just nothing more to try at this point,” she said. “They have tried everything they can, and the cancer is just so much more aggressive than we can battle.”
On Maggie’s fourth birthday, people sent her hundreds of Disney princess gowns. She has a couple of favorites, according to her mom. “We are talking beautiful ballroom gowns. It was so amazing and so humbling. The Elsa dress, in particular, is her favorite and it has a long train. She usually would put her dresses on and get all fixed up and walk down the halls and show everybody and wave.” Two days ago, Maggie woke up and wanted to put on her Elsa dress. Soon she discovered that she was no longer able to walk. “We just carried her down the hallway in her dress and tried to make it work the best that we could.”
One of the main hopes Kathryn has by sharing Maggie’s story is raising awareness of childhood cancers and the amount of money spent researching childhood cancers. Less than 4% of cancer research funding focuses on childhood cancer research. Said Kathryn, “It’s extremely discouraging and disappointing, the lack of funding. They are worth more than 4%. There are only four drugs/chemotherapies approved for the use in treatment of childhood cancer. Adult cancers, there are hundreds upon hundreds of FDA-approved chemotherapies approved. Why are children only getting 4%?”
She also urges parents to be aware of your child’s symptoms and to pay attention to how they react, saying, “Sometimes, their internal and emotional reactions can manifest in physical ways like ‘My tummy hurts.’ Sometimes there is not one thing you could have done differently, which is what I am trying to tell myself because it is easy as a parent to blame yourself.”
Three days prior to Maggie’s cancer diagnosis, Kathryn took a job with Grandview Hospital but had to quit in order to care for her daughter. The financial burden has been overwhelming. “God has blessed me with what I needed at the time and I am a single mom with three kids and no job,” she said. “Whether it be a T-shirt fundraiser here or there or someone just donating a little bit of money, it’s been enough. We haven’t been without at any time.”
The Maggie Grant Fund has been set up at Cullman Savings Bank to help Kathryn and Maggie. Donations can be made at any Cullman Savings Bank location.
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