Saving Sarai

On February 16th we went for an eye exam because our daughter Sarai’s left eye had been showing signs of straying for about 2 weeks and it appeared to be getting worse. Something just wasn’t quite right. We casually assumed it was strabismus, since it’s hereditary in our family and scheduled an eye exam. We were able to get Sarai that same week for her appointment. At the appointment the ophthalmologist diagnosed her with 6th nerve abdunct left palsy. He then ordered an MRI. Looking back on that day, he must have known what we would later find out. On that following Monday, February 20th we took Sarai to get her MRI. We left the MRI clinic around 2:00 p.m. The same day around 4:00 the ophthalmologist’s office called and wanted us to come back in for the results. This made me nervous because my husband, Broderick, was at work and that was quick! We made arrangements to meet with him at 8:00am the following morning.

That ride was full of anxiety. When we arrived the office explained to us that our daughter had a mass on her brain stem about 3 cm. The mass was causing the pressure on her optical nerve. We were given so many terms we didn’t understand and quickly they set us up with an appointment the same day with a pediatric oncologist at Children’s Medical Center.

We will be forever grateful to the ophthalmologist for requesting that MRI, he was very kind and so were his nurses. We left and went to pick Sarai up from school to meet with the pediatric oncologist. While there we learned that she had a rare brain tumor on her brain stem and there was essentially nothing we could do about it, but make her comfortable in the next few months. Sarai our sweet, sweet child was diagnosed with cancer. She has Diffuse Intrinsic Pontine Glioma (DIPG). DIPG is a very rare, aggressive, and inoperable brain tumor.

Doctors informed us that radiation treatments are the best options for DIPG. Unfortunately, it will only shrink the tumor and it could come back more aggressive. In addition, the complications associated with the side effects are tremendous and those complications are what accelerate the demise of so many DIPG children.

As Sarai’s parents, we can’t just sit by and allow this diagnosis to take our baby’s life, we must fight! We have been exploring all options and using alternative, natural treatments, researching facilities that offer different successful approaches to fight cancer and DIPG on the local, national, and even international level.

This is where we need your support. Most cancer treatments are expensive. There are trials all over the world that require significant costs including treatments, travel, food and lodging. There are also alternative treatment facilities that don’t take insurance that could cost upwards of $6K - $20k a month. Primary consultations alone are expensive and out of pocket. Services, if agreed upon can also range from hundreds to thousands of dollars monthly.

DIPG is aggressive and we have to work quickly to find a cure. As I'm sure you can imagine, we are all deeply shattered by this news. Understandably, some days are upbeat and productive and other days are challenging, filled with anxiety and uncertainty for Sarai’s future. At times, we are all hopeful and at other times, we simply feel overwhelmed and helpless. However, we choose to stay positive, proactive, and to continually educate ourselves in all facets of DIPG. We are completely devoted to her health and well-being. Going home to make her comfortable in the months to come is just not an option for us.

FACTS about DIPG:
In DIPG, the tumor is located at the base of the brain stem near the top of the spine. Each year, 200-300 children in the U.S. receive this diagnosis. However, due to the lack of research and DIPG’s aggressive pattern, a struggle to find a cure remains. Less than .4% of funding goes to DIPG research.

Please help us to provide Sarai the very best treatment. She deserves to fight and overcome Diffuse Intrinsic Pontine Glioma. We solicit your prayers for our family. If our family touches your heart, please consider donating on Sarai’s GO FUND ME page. ANY amount will help! All donations are appreciated and will further enable us to give Sarai a fighting chance. She deserves that. We also ask that you share our family’s need with your family, friends, co-workers, churches, ministries, prayer groups, organizations, and social media. We firmly believe there is a cure out there for her and all of the other children affected by DIPG. Thank you for your time. God bless.