HOMETOWN: MANKATO/ST. PETER, MN
DIAGNOSIS: GRADE III ANAPLASTIC ASTROCYTOMA
DATE OF DIAGNOSIS: 2013
CURRENT STATUS: IN REMISSION
From the Beginning…
(Story written by Kallie’s mom, Jessica) In the fall/winter of 2012, Kallie started vomiting for no apparent reason. We took her to the doctor in Sioux Falls and didn’t find out much, other than maybe it was just a bug, but it wouldn’t go away. We then called the doctor thinking maybe she had food allergies and we wanted to have her tested. Turns out she showed a VERY MILD egg and dairy allergy. So mild that she’d have to consume an entire dozen eggs, or gallon of milk to even feel any effects. Her vomiting continued, only by February of 2013, it had gotten much worse and then she started with a new symptom.
She would have episodes throughout the day where she would start holding her stomach and walk around in a circle. She looked like she was in a lot of pain. We called the doctor again. They thought maybe she was constipated. An x-ray showed this maybe was the case. We tried a home remedy that still didn’t help. We were then sent to a GI specialist and started on a prescription. This seemed to help, however her “episodes” of holding her tummy and walking around and not responding persisted, only now her left eye started blinking and twitching strangely during these episodes. The episodes would happen sometimes between 10-20 times a day, making her very tired.
After a lot of our own research and talking with family and friends we thought these episodes appeared to be seizures. We called the doctor and were referred to a pediatric neurologist. The wait to get in seemed like forever. One night, Kallie had so many of these episodes, I called the doctor the next day and they got us in right away. We scheduled an EEG, which was done on June 13, 2013. The EEG showed she was having frontal lobe seizures. Kallie started on an anti-seizure medication while we waited to have an MRI to rule anything else out.
On June 26, 2013, we arrived at the hospital at 10:00 a.m. for Kallie’s 12:30 p.m. MRI, which would hopefully give us some answers as to why she was having these seizures. She did great, she did not have to be sedated and we were so excited by the fact that she was doing so well. We weren’t a bit phased by the fact that she laid in that MRI machine for one hour! A 15-minute MRI that was an hour long should have been our first clue that something wasn’t right. We got back to the room and an attending physician walked in and said there were some findings on the MRI and that our doctor would be coming up to talk to us. We went silent. Speechless. Hopeful it was nothing serious. At 3:00 p.m., the doctor came in. He sent Kallie and her older brother, Kaiden, with the nurses to keep them busy. He then took us to a huge monitor to look at the MRI scan. There it is, right before our eyes, a large tumor on the left side of Kallie’s brain. We were numb.
The next day, June 27, 2013, we left for Children’s Hospital in St. Paul, MN. After a few hospital stays and a 15-hour brain surgery on July 8, 2013, Kallie was diagnosed with Grade III Anaplastic Astrocytoma. We were told she would have only 3-5 years to live. At this point we knew we needed to do more to save Kallie. We researched, we traveled, we met with doctors all over the country because our research told us that for Kallie to have any chance at long-term survival, we would need to remove at least 90 percent of her tumor. It was scary. The tumor was in a very difficult location, it was passing through an optic nerve and pushing on her carotid artery. On September 4, 2013, Kallie had her second surgery at Mayo Clinic in Rochester, MN. It was a miracle. The tumor was fully resected, but not without side effects. Kallie spent more than a week in the ICU and more than a month on an inpatient rehabilitation floor at Saint Mary’s Campus at Mayo Clinic trying to regain everything she lost in surgery. Due to the difficult location of her tumor, she suffered small strokes that left her unable to walk, talk or move the right side of her body. We knew we had a long road ahead, but we had our sweet Kallie and the surgeon assured us she would do okay due to her young age.
After more than a month at Mayo Clinic, we took a med flight to Boston where Kallie would continue her intense rehabilitation and receive proton beam therapy, a type of radiation. Kallie completed 30 rounds of radiation at Mass General Hospital in Boston. She would travel by ambulance daily from her inpatient room at Spaulding Rehabilitation Hospital. After early morning radiation treatments, each day, she would do minimum three hours speech therapy, physical therapy and occupational therapy. It was in Boston where Kallie relearned how to walk, she finally started to talk again (THANK GOODNESS!) and her eye began to heal.
After spending more than three months in the hospital, we were discharged from Spaulding Rehabilitation Hospital on December 20, 2013. Kallie returned home, started kindergarten and continued therapy for many years and still does therapy in school. Kallie is now 13 years old and in 7th grade. She now lives in Mankato/St. Peter, MN.
Some days she’s just a typical sassy teenager! She loves going to school and she simply LOVES life. While she might not be the same little girl she was when she was diagnosed, she’s here. She’s full of energy, loves music, loves her family, her blended family and anyone who is part of her life. We are so blessed to have her.
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