Miss Mattea Lesorgen

My name is Allie- I am Tara’s younger sister— and sweet, Miss Mattea’s aunt.

As many of you may have already heard, on November 10th, Mattea was discovered to have had a return of brain cancer, in addition to extensive disease throughout her cervical and lumbar spine. On November 13th, Mattea underwent a several-hour long craniotomy/laminectomy with the hope of removing enough tissue for biopsy, while possibly debulking part of the mass present. Because the tumor has infiltrated such vital structures, including the brain stem, biopsy alone was the only choice. While we are all still awaiting pathology results, it is clear that regardless of what these results show, the extent of cancer, and the areas it encompasses leave only palliative options for our beautiful girl. Due to previous treatment, and lifetime max dosing of radiation to the area, even palliative options will be limited.

Mattea finished treatment on October 14, 2007 and remained without disease for all of the years in between. Though she spent the better part of 16 months in the hospital from 9 weeks of age on, Mattea has enjoyed a medication-free, 16+ years of life since that time. Far surpassing any expectation of survival then, Mattea became a beacon of light, and pillar of hope in the ATRT community. As this rare, and highly aggressive childhood central nervous system cancer spared few, Mattea was a pioneer that led so many families all over the world to hold out hope that more may be just like her. She’s had an impact with a reach that extends beyond our comprehension. To us, she was a first daughter, granddaughter, and niece. She was just sweet Mattea to us. To the world, she has been likened to the North Star. A guide in the dark, no matter what.

While our girl, affectionately known as “Toots” to us has defied odds repeatedly, we do realize that this time, Mattea’s quality of life will deteriorate rapidly, as promising treatments and studies for disease this extensive are beyond the amount of time she has remaining. Now is the time for my sister, Tara, as well as Toot’s younger sister, Mackenzie, and two brothers, Maddox and Marley, to make the very best of memories in the “good” time she has left.

Tara has now been on a leave of absence from her job as a NICU Nurse—a career decided upon after receiving the extraordinary care given to Mattea from nurses at Children’s during treatment all those years ago—after promptly leaving work to get Mattea to Lurie Children’s Hospital of Chicago in the night just one week ago. She will remain on this leave to see Mattea through, but also to provide stability and support to all 4 of her children. Their goal is to add an abundance of memories to all that already exist, but to do so with the knowledge that they are all being made on a tight limit of borrowed time. To make that happen, I'm creating this fund to help support her, the family, medical expenses, the Tara/Toots bucket list, and anything else that may come up along the way. Any and all will help.

We love you, and appreciate the outpouring of love and support during the most heartbreaking time.