*Please note that donating to Caring Bridge is not donating to Zasha's go-fund-me. We have set up a go-fund-me for Zasha, it is located in the 'ways to help' tab or here:
https://www.gofundme.com/64xte1c. Thank you! We truly appreciate all your loving words and support! - Auntie Karin*
Zasha had been struggling with what appeared to be congestion and an upper respiratory or sinus infection since the beginning of August. Her breathing was getting progressively worse. We saw numerous doctors and urgent cares with no resolution. No one was getting much sleep in our house, and Zasha wasn't able to stay awake at school because of her exhaustion.
On Tuesday, September 11, we brought Zasha to urgent care again, where it was suggested the issue may actually be her adenoids. The following morning she saw an ENT, and an adenoidectomy was scheduled. On Thursday, her breathing had become so labored and she was struggling so much we decided we needed to bring her in to the ER at Children's Hospital. Her whole throat had become swollen, making it hard for her to maintain a clear airway. She was treated with a nebulizer and steroid, and we went home. The treatments gave her some relief, and she spent Friday playing with her sister, auntie, mama and grandma. But by Friday evening, the swelling was back and worse, resulting in a very rough night for all of us.
Saturday, September 15 we came back to the ER at Children's Hospital. Her situation was so scary they knew they would admit her right away. Before a bed became available, the decision was made to escalate and admit her to ICU to better manage her breathing. Zasha's entire throat was swollen so much that we could see it closed as she tried to force air through, and her whole body was struggling to get oxygen past the obstruction.
Her care team focused on trying to reduce the swelling and clearing an airway for Zasha. For two days, though some of the swelling had successfully been reduced by steroids, her breathing continued to worsen, and we spent nights trying different things to try to make breathing easier for Zasha: nebulizers, C-PAP and bi-PAP machines, and a nose trumpet were all used. By early Monday morning, the decision was made to push up the adenoidectomy to try to give her immediate relief.
When the surgery started, it became clear that the adenoids were not actually the issue, but that there was a mass behind Zasha's nose, pushing her soft palate, uvula and tonsils into her airway. A biopsy was performed on the mass, and Zasha immediately went into MRI. During surgery, she was intubated, and the decision was made to keep her intubated and under sedation.
The MRI results showed a large malignant tumor behind Zasha's nose. At this time, we are still awaiting the pathology from the biopsy, but her oncologist is making an educated guess about the type of cancer we are looking at. It is a sarcoma, and we will know more specifically what type and staging within the next day or so. CT scans of her chest, abdomen and pelvis showed no metastasis. A PET scan and bone marrow biopsy will also be performed.
In the meantime, preparations are underway to get us ready to jump into a treatment plan as quickly as possible. We are getting ready for surgery(ies) for a g-tube (stomach), tracheostomy, and port that will aid her treatment going forward. EKG and echocardiograms are being performed to establish her baseline cardiac information prior to treatment. Zasha is resting peacefully under sedation with a ventilator.
The exact treatment plan will be established once a diagnosis has been confirmed, but it will likely include chemotherapy, radiation and possibly additional surgery. Our care team has been phenomenal, and we know we are in the right place. We are blessed to have access to some of the best medical care in the world, and an incredibly loving support system of family and friends rallying around us. Zasha is the toughest little girl we know, and she is ready for the fight.
