Diagnosis • 2016

Ryan was nearly six months old when, one night out of the blue, our easy-going baby started crying a cry I didn’t recognize. It was one of pain but unlike any I had heard from him before. He was screaming relentlessly, and neither Titus nor I could make it go away.

Our pediatrician, Laura, asked about Ryan’s family history to which I still didn’t know any of the answers. Then she said,

“None of the siblings have sickle cell disease, right?”

“I don’t think so. Wouldn’t we know by now?”

 

After reviewing Ryan, Dr. Laura sent us for lab tests. 

While we waited for results, I read and read about sickle cell disease in Africa.

1000

Approximately 1,000 children are born with sickle cell disease each day in Africa.

More than half die before they will reach the age of five.

All because of a single error in Ryan’s DNA code, a T that should have been an A.

The pathology results came by email. A PDF held the expected but devastating news that Ryan had sickle cell disease. Countless times over the years, I have sat with parents and shared news that no one ever wants to hear. Now it was my turn. I knew all the other siblings had to be tested too, but for today, I was going to focus on Ryan and grieve.

I don’t want this.

I repeated these words to my parents who were a world away, “I don’t want this for Ryan, or for us.” They were quiet as I processed and grieved. 

“I don’t want this for anyone. Why are the kids here dying before they turn two? Why are there such better outcomes for them in other places?”

Days later, Titus  took Ryan’s brothers and sisters for sickle cell screening tests.

Nothing prepares a parent for the moment they must walk into a cancer center with their child as a patient—or in our case, three children on the same day.

Countless times I entered this building as a nurse practitioner to provide other patients and families palliative care.

This Tuesday morning, my role changed. I entered as a mother. Defensive and heartbroken, trying not to completely melt down, I was living what felt like a nightmare. I did not imagine this story would be mine. Tears filled my eyes as I scanned the sea of faces, mostly women and children coming for the clinic.

After days of figuring out logistics for HLA testing (a complex lab test  used to match patients and donors for a bone marrow transplant), a long line of siblings sat in a row in a doctor’s office in Eldoret. It was Valentine’s Day. Lots of cheek swabs were done. Even with the explanations given, confused looks filled the kids’ faces as they tried to imagine what we were doing.

Medical forms were filled out, cross-checked and signed. The cost to know if there might be a cure possible for these children? $684. Each sibling had a twenty-five percent chance of being an identical, 10/10 match for Ryan, Geoffrey, and Alice.

The waiting was over. The news bittersweet. As our hematologist later described, Geoffrey and Ryan got a golden ticket while Alice did not.

I forwarded the reports to Dr. Jodi the next day and asked for input and possible next steps. I was certain there were at least 1,001 to be taken. From the other side of the globe, Titus and I talked to Jodi by phone. She walked us through transplant procedures, risks, and her recommendations. Her knowledge, experience, and kindness led us down a path that seemed both hard and right.

One comment Jodi said stood out to me the most,

“To get through transplant, you need community support. It’s the only way to make it.”

Dr. Moore’s message, along with Jodi’s wise words, led us to decide that if we were given the opportunity to do transplants, Los Angeles would be our choice and UCLA would be our treatment center.