Our sweet and sassy Zoey has been diagnosed with cancer – a parent’s worst nightmare. We are still waiting on final pathology for a complete diagnosis and treatment plan. Zoey has been such a trooper through all of this, watching numerous movies a day, making jokes and twirling her hair. Please pray for our sweet girl.
We are forever grateful to our family and friends who have stepped in to help with the boys, take care of our dogs and our house. Our employers have been so amazing and supportive as well, making it easy for us to be with Zoey every step of the way. All 26 nights in the hospital through 4 stays so far. We miss the boys so much.
Below is a not-so-brief backstory of everything leading up to her diagnosis.
It began with headaches and a titled head, then vomiting. 2 trips to primary care resulted in normal bloodwork and a potential ear infection. Not happy with that answer as she continued to vomit, I brought her straight to Children’s in Minneapolis (4/14). After a long wait in the lobby, we finally get back to a room and the ER physician was so kind, listened to my concerns and got things moving with bloodwork and a CT scan. The scan showed what they thought was a potential Chiari malformation, but they needed further imaging so we were admitted. Mike caught the last flight home from his golf trip and joined us early the next morning.
Her MRI showed swelling of her cerebellum on the right side, not Chiari, which blocked the cerebral spinal fluid from draining, enlarging the ventricles in the middle of her brain. We were told it could be Cerebellitis or an atypical tumor, but presented more like Cerebellitis. She was started on steroids to help with the swelling and an external ventricular drain was placed that evening to help reduce the hydrocephalus. By the next morning, she seemed to be a new girl with all the pressure released. The steroids produced some toddler roid range and hunger, but didn’t seem to touch the swelling, so they tried a second treatment called IVIG. The drain was clamped a week later to see if she could handle draining the fluid on her own, and 48 hours later the drain was removed. We stayed another night for observation and were finally discharged after 12 nights since first being admitted.
The morning after we got home, her right eye was almost swollen shut, so we headed back to Children’s where it was determined that the spinal fluid was taking the least path of resistance and following the path where the external drain had been removed, and pooling in her face. She was put on Diamox, which reduces the production of spinal fluid, and admitted to Children’s again. We were discharged the next morning and the swelling continued to reduce throughout the day and back to normal by that evening (4/27).
We were lucky to be home through the weekend and celebrate her 3rd birthday on Monday, May 2nd. She enjoyed her birthday dish of choice…sushi 😊 However, her symptoms began to show again, and we were back at Children’s on the 3rd. The MRI showed her ventricles were enlarged again, and we were admitted for observation. On Thursday, May 5th, Zoey had a permanent, programmable shunt placed in her brain to help drain the fluid. The shunt is on the right side and the tubing runs down behind her ear, across her chest and is drained into the cavity around the organs in her belly. They also coil extra tubing in her belly to plan for her future growth and getting taller. We were discharged on Saturday, May 7th, and were able to celebrate her birthday and Mother’s Day on Sunday with our families.
The following week, we found ourselves in the clinic on Tuesday getting her shunt adjusted from a 4 to a 5, thinking she was over draining as she was having symptoms again. We were back the next day putting it back to a 4 as her symptoms increased in intensity. That Friday, we spent all day in the ER, adjusting her shunt again – this time to a 3, getting fluids as she was quite dehydrated from not eating or drinking much all week. The neurosurgery team seemed stumped, as every turn in her case has been rare. She seemed to have perked up a bit Saturday night and Sunday, went to daycare Monday, Tuesday and Wednesday. However, her symptoms returned with intense pain and vomiting overnight and we made the trip back to Children’s on the 19th
The MRI on the 19th showed that the cerebellum had increased in size, but the ventricles looked stable. We were admitted again and scheduled for a sedated, 3 hour MRI with spectroscopy the next day to look at the signals and matter of the area. They also advised getting a biopsy and removing some of her skull to give the cerebellum swelling more room. That procedure was scheduled for Monday, May 23rd. Cerebellitis was ruled out at this point, and the 2 remaining diagnoses were Lhermitte-Duclos, a very rare benign malformation, and an atypical tumor. We were praying for the first diagnosis.
We kept her comfortable over the weekend with pain meds, had visitors, and she got to see her brothers on Sunday.
The procedure went well on Monday, but it was an agonizing 3 hours waiting to hear from the surgeon. He told us the initial pathology was a Glioma, but needed to wait for the final pathology to determine grade.
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