Help our Sweet Nayia Battle Glioblastoma

We are reaching out for Assistance. This Summer, Nayia, the 12-year-old daughter of our dearest friends, Anna, and Zim Markos, was diagnosed with a very rare and aggressive cancer of the Spinal Cord; Spinal Glioblastoma Multiforme 4.

This battle started in April when Nayia started feeling numbness in her hand, then wrist and elbow. This was chalked up to possibly too much iPad use. Once the numbness moved down the right side of her body around mid-May, she was taken to Lutheran General and diagnosed with Acute Transverse Myelitis. She was treated with steroids and after a stay in the hospital for 5 days, was released. Towards the beginning of June, the numbness and weakness started coming back and on June 4 she was taken to Lurie Children’s Hospital of Chicago. It was then that we learned of the misdiagnosis and that there was a tumor in her Spinal Cord. On June 5 Nayia underwent a surgical biopsy where a piece of her spine was removed to access the mass and take a tissue sample. The following day it was confirmed to be Spinal Glioblastoma Stage 4. There are no words to describe the look in her Parents eyes and the words that came out of their mouths begging for this not to be true. Every Parents worst nightmare was realized at this moment.

Nayia remained in ICU following the surgical biopsy for 4 days. From that moment until the present, the Cancer has rendered her paralyzed from her neck down.

In June, Nayia began Chemo and Radiation for 6 weeks while staying at a Rehabilitation Center in Wheaton. She, unfortunately, had multiple setbacks and interruptions in treatment due to her blood platelets dropping to low levels. After being sent back to Lurie Children’s Hospital for platelet transfusions and waiting for levels to get back to a safe level, she was able to start up treatment again.

In August, Nayia ended her therapies but had to be admitted back to the Hospital for dangerously low levels of platelets and white/red blood cells rendering Nayia with no immune system and no blood clotting ability. After almost 10 days of daily transfusions, she was able to be transferred to Shirley Ryan Ability Labs in Chicago for physical therapy.

Nayia suffers from intense nerve pain daily, is unable to move from her neck down, yet never ever complains. Her last MRI showed that the Chemo/Radiation did not shrink her tumor, but it has not grown. She will start round two of treatment next week.

Unfortunately, this Cancer has no cure. Several chemotherapies can help target her specific gene mutations, which can hopefully prolong her time while new drugs are being developed. This is the most devastating of all cancers, with a tumor regeneration rate of 80%.

We set up the Go Fund Me site because so many people have asked how they can help.  Any money raised will go towards Nayia’s medical expenses and ongoing care, as well as offset the financial burden of time away from work.  All donations, no matter how small, are deeply appreciated.