On November 24, 2015 what started as a trip to Aurora urgent care turned into the start of a long and scary journey.  3 month old Alonzo was admitted to Children’s Hospital of Wisconsin for increased spinal fluid on his brain and what appeared initially to be a cyst.  After 2 drainage procedures (3 hours duration each) and catheter placement to relieve some the fluid and pressure, he was stable enough to undergo a brain MRI with sedation.  The results of the MRI were not good as it was discovered that the mass was not a cyst but a solid tumor sized at 2X3 inches located just under the skull on top of the brain.  On 11/26, Thanksgiving morning, Alonzo underwent a craniotomy to remove the tumor, a procedure that lasted 9 hours and required a blood transfusion to maintain his vitals.  Early stages of the surgery revealed that the tumor was not in fact simply under the skull but embedded in the brain under a thin layer of brain tissue.  Surgeons worked a miracle and were able to remove all of the mass and drain additional fluid.  The road forward is uncertain as the need for additional procedures is unknown and the overall use, development and vision on the right side of his body was in question.  Alonzo spent 7 long days in the hospital and was released on November 30, 2015 with many medications and needing constant monitoring in the upcoming days.
Alonzo’s official tumor diagnosis is for a Desmoplastic Infantile Ganglioglioma.  It is a rare form of a growth (less than 75 known cases worldwide, first diagnosed in 1989) that could have, in no way been prevented nor predicted.  It is likely that this began to develop in-utero before he was born but was not significant enough to have been noticed in routine ultrasounds.  Currently, Alonzo’s tumor has been classified at stage 1-benign, however, he undergoes constant follow-up with the neuroscience and oncology teams at Children’s Hospital in addition to routine quick-brain MRIs with each visit to monitor any seizure activity, re-growth, increased fluid, hemorrhaging and any other potential concerns.  He is being evaluated for birth-to-three participation through which he will be able to receive necessary therapies to help with additional monitoring and overall development.
While the family has insurance through Brooke’s employer they were required at the start of 2015 to switch to high deductible health plans which increased the overall immediate member responsibility.  The family is asking for help to cover some of that responsibility and to help with the out of pocket responsibility that they will incur over the next year, 2016 having to remain with the high deductible plan.  They also ask that, if you are able, you consider blood donation through the American Red Cross or your local blood bank as this was also a life saving measure for Alonzo and can be for many others.