Heather Fought Through a Rare Diagnosis for Motherhood

This is a guest post by Heather Williams, 25, an ER nurse who was diagnosed with renal medullary carcinoma. She lives with her husband Josh and daughter Indy in North Carolina.

In November of 2021 I married the love of my life. We had a great first year of marriage and hoped to have children soon. I graduated nursing school in May 2022 and began my dream job working as an ER nurse.

In December of 2022, I started having severe back pain. I assumed it was a kidney stone and drank a lot of fluid to flush it out. January 17^th my husband and I were in Colorado on a ski trip and the pain became unbearable. I had been seeing a urologist who suspected I was simply dehydrated. When we landed back home in North Carolina, I requested an ultrasound as soon as possible. On January 24^th, 2023, I had the ultrasound which showed a 5.9 cm mass in the middle of my kidney. My husband and I went to the ER that same day where an MRI confirmed that the tumor was renal cell carcinoma – kidney cancer.

A pregnancy test was run off of my labs that same day and was negative. My urologist suggested that we remove the entire kidney immediately due to the size of the tumor and not waste time on a biopsy. On February 6^th, just 13 days later, I went into the hospital for a total nephrectomy.

Before the operation, I had to take another pregnancy test to be cleared for surgery. I remember joking with the nurse about how there was no way I was pregnant. But the two pink lines on the test results could not have been clearer. A blood test confirmed the results. I was, in fact, pregnant.

In consultation with my surgeon and obstetrician, both agreed that the cancer could not sit inside me for 8 months without potentially fatal complications. Everything was made as safe as possible for me and the baby and we proceeded with surgery. My surgeon informed us that the surgery was successful and that he was able to remove all the cancer. He said we should expect biopsy results within a week.

My husband and I spent that week researching the different subtypes of RCC. When we came across renal medullary carcinoma (RMC), we skipped over it. RMC makes up less than 1% of all kidney cancers and typically affected African Americans who harbor sickle cell trait. None of these seemed to apply to me, a young Caucasian woman without sickle cell trait.

Nine days went by without word so I called my surgeon for an update. He told me my biopsy had to be sent to a larger lab at the Cleveland Clinic. Then, he asked me if I had sickle cell trait.

I knew in that moment my situation wasn’t good. I was referred to oncology with RMC. My husband and I were scared. RMC was not only extremely rare, but also had a very poor prognosis. On top of that, I was already experiencing severe morning sickness.

I met with Maternal Fetal Medicine who advised that I have an abortion immediately if I wanted any chance at attempting to fight this cancer. My heart has never been as shattered as it was in those days, but I knew that giving up my baby for my own life was not an option. A cousin of mine told me about a young client of hers who had RCC, I reached out to her for some support and she directed me to the Kidney Cancer Association (KCA). I started researching the KCA and found Katie Coleman, another young woman with a rare kidney cancer that also had a very poor prognosis who was diagnosed at stage 4 and was in remission.

I wanted to be like her. I found Katie on Instagram and messaged her about my diagnosis. She messaged me back and told me that her oncologist – Dr. Pavlos Msaouel at MD Anderson Cancer Center in Houston, Texas – was the top oncologist in America for RMC and one of the only doctors who was actively researching this cancer. She was at a conference with him the following weekend and told him about me and we were able to get in touch.

After a few days of emailing back and forth about my case, I finally told him that I not only had RMC, but was also 6 weeks pregnant. His next email changed my life. He said, “I will do everything in my power to make sure that this baby is born.”

I started chemotherapy at 17 weeks pregnant. My baby was born prematurely at 33 weeks weighing 4 lbs. We spent 3 ½ weeks in the neonatal intensive care unit (NICU) and then were discharged home.

Today my daughter is 8 months old and a completely healthy baby. I resumed chemotherapy 2 months after she was born and I also completed 6 weeks of radiation at MD Anderson Cancer Center.

Had I not gone down a path that brought me in contact with Katie Coleman and Dr. Msaouel, things could have turned out very differently for me and my daughter. She is the first baby in the world to be born from an actively fighting RMC patient. I am on the road to remission and plan to fight this aggressive, evil cancer to the very end.