Help Baby Gracelyn Fight Her Tumor

Gracelyn is 7 weeks old. Born 9lbs 8oz.

 A few hours after birth she was noticed to have significant swelling in her left side of her face. Gracelyn was born with a concerning neck mass. Due to the location of the mass she was ushered to see ENT (ear, nose throat dr). The ENT required her to get an MRI. the results from the MRI showed most of it but they need more imaging. She has a tumor that goes from the base of her skull into her brain, into her spine(C4-T2 Vertebra) into her throat, and down into her chest. While she was in the MRI, her oxygen kept dropping. We were admitted the PICU. On July 31st. They did more imaging. They did an intubated -sedated MRI, CT scan and a biopsy. She started to lose weight a few days after birth, from the struggle of feeding from a bottle or breast. She gags from the amount of pressure caused by the tumor in her throat area. Which causes her to throw up all her milk and gain limited amounts of nutrients. She was started on a NG tube feeding in the PICU, but due to the long term issue with her throat, they decided to do a G-Tube Surgery. Our PICU stay was from July 31st -August 15th. She has started to show signs of decreased activity in her left lower arm and decreased movement in her left eye. She was also diagnosed with a vascular issue. Her abdominal aorta has a thinned area. This is causing high blood pressure in her upper extremities and lower blood pressure in her lower extremities. Leaving her with hypertension. Right now she’s stable on medication to maintain her blood pressure ensuring all her extremity have adequate flow to maintain function. They have recently started her on a therapeutic medication that should help maintain the tumor from growing, and could possibly shrink the tumor. In hopes this drug will work, there’s also the risks of heart complications and skin irritation. 

 She’s currently stable at home with oxygen support, feeding tube support, and a pluse ox monitor.

 We have a long road ahead of us. 

With 4 other siblings we need the help with funds for hospital bills, travel expenses, care for the children at home, and medical equipment. 

Please continue prayers over our next steps into her health care plan. If you find yourself willing to donate please do.