That look!! This girl is a ball of fire! I loved her honest personality! She let me know that she wasn’t going to do something and she also let me know that she liked me! haha I love her! Please pray for sweet and spicy, Ziyah and her family, be present with the ones you love and be thankful.
Little Heroes Session, written by her mama…
Ziyah Lucius was diagnosed with DIPG on April 23, 2021. Diffuse Intrinsic Pontine Glioma is a brain cancer in the Pons of the brain stem. It’s is a rare cancer only affecting about 200-300 kids per year but is also the most fatal of all children brain cancers.
On April 22, 2021, the day before Ziyah was diagnosed, she was completely lethargic and could not keep any food or liquids down. We took her into the doctor and told it was likely a virus. Later that evening her symptoms were worsening. We quickly called 911 out of fear of driving with her in the car to the hospital. In the ER they asked millions of questions and ran every test all of which were completely fine. They found a mass through CT scan that night. She was admitted to the PICU in the early morning hours of April 23rd. That morning/afternoon Ziyah had her first MRI. They were able to tell from MRI that Ziyah had DIPG. She was given steroids, fluids, and an NG feeding tube to help build back her strength and reduce any swelling or bleeding the tumor was having. It was recommended by Seattle’s Children tumor board that Ziyah receive radiation treatments as soon as possible. So on, April 30, 2021, only one week after diagnosis, Ziyah began her first treatment of radiation. She received 30 rounds of radiation therapy and finished June 18, 2021!!
At the moment Ziyah is still her spunky, fun, crazy 4 year old self. She no longer is on a feeding tube and is completely off steroids. She enjoys going to the pool, doing tik toks, and playing with her brothers and sister! She likes to pretend play princess and loves dressing up and putting on makeup. She absolutely loves spending time with family and if she’s not at home she’s with her grandparents.
We are so proud of how strong Ziyah has been through this whole journey. It has definitely been an up and down battle but she takes everything on so well and it’s amazing to see how far she has come since the beginning of her diagnosis. Currently she is waiting to receive another MRI on August 24th, to see the status of her tumor and we are praying that she receives a stable diagnosis. Then we will be heading to San Francisco to participate in a clinical trial at UCSF.
We just want people to know that it’s okay to enjoy your life in tragedy. Everyday is a challenge but we choose to embrace those challenges with positivity. Together we have grown stronger as a family and we cherish every moment to be made with our precious babies.