Tyra Johns
Mommy to Elijah
Malignant Rhabdoid Tumor Predisposition Syndrome
February 23 – May 20, 2022

The pregnancy itself was hard. Shortly after finding out I was pregnant I caught COVID for the first time. A few months later I was diagnosed with severe anemia, needing transfusions done weekly. Then right after New Years, at 8 months pregnant, I was in a bad car accident. I was due any day and my car wreck left me with a bad concussion, bruises all over my body and no transportation. Two weeks after my car wreck I tested positive for COVID again.

I gave birth to my son, Elijah, on February 23, 2022 at 2:37am. Because of my severe anemia, I ended up hemorrhaging and lost 2x more blood than what I should have. I didn’t have a support person, so I stayed in the recovery room by myself for the entire stay. Despite everything I had just been through, I was ready to go home and introduce Elijah to his siblings. My heart felt full and my little family was complete.

I gave birth to my son, Elijah, on February 23, 2022 at 2:37am. Because of my severe anemia, I ended up hemorrhaging and lost 2x more blood than what I should have. I didn’t have a support person, so I stayed in the recovery room by myself for the entire stay. Despite everything I had just been through, I was ready to go home and introduce Elijah to his siblings. My heart felt full and my little family was complete.

After all I went through during pregnancy and delivery, I didn’t think life could possibly get any worse… I was wrong. A few days after bringing Elijah home from the hospital I noticed he kept spitting up as much milk as he was drinking. I was assured by Elijah’s pediatrician that he was fine. I took him to the pediatrician’s every week for the first 8 weeks of his life and each time they all told me the same thing.

By 8 weeks old I noticed his stomach was swollen, the vomiting was the same no matter how many times I switched formulas, and he still wasn’t gaining any weight. I was told he had acid reflux and the swelling was an umbilical hernia, nothing to be concerned about. On April 29th Elijah wasn’t crying for his bottles like he usually would. A couple days later he started crying during feedings, like he was in pain and his stomach looked more swollen. On May 5th he wouldn’t eat at all and wasn’t staying awake so I rushed him to the ER. I was thinking worst case scenario being severe constipation and dehydration. Hours go by then a doctor comes in to tell me that my 9-week-old son has a large mass taking up his entire abdomen as well as other masses found in his left lung, his liver, both kidneys and his upper right thigh. My newborn son had cancer.

We were flown to St. Jude’s the next morning for more test and to look into treatment options. Finding out that my son had cancer was devastating and I knew my whole life was about to change. I had to leave Elijah’s siblings behind while we stayed in Tennessee. I didn’t know how long we were going to be there, but I was hopeful that we would start a treatment and Elijah would get better. We were going to get through this no matter what and I was going to bring Elijah back home to his siblings, cancer free.

Before St. Jude’s could start treatment, they needed to know what type of cancer my son had. On May 12th we got the results back and every Mother’s worst nightmare became my reality: my son wasn’t going to make it. Elijah was born with a rare type of cancer caused by a genetic mutation that happened in the first stage of pregnancy. There is no cure or treatment that can help and there is no known cause for why it happens. They gave Elijah a few days to a week left to live and suggested we go back to Missouri to start hospice. We flew back to Missouri the next day so Elijah’s siblings could spend time with him. On May 20th I had to say goodbye to my son forever.

On Angels’ Wings took our photos at the hospital back in Missouri while we were in the PICU. Before Elijah was diagnosed with cancer, I wanted to get family photos done but never got to do it. OAW was able to take photos of all of my kids together and that’s something I will always be grateful for.

After Elijah passed, I had to return to work and go back to a ‘normal’ schedule but life will never be the same. My 4-year-old misses his baby brother and we talk about Elijah often. I talk to my one-year-old about her baby brother and show her pictures of him as well. Even though he’s no longer with us physically, we still try to include him in holidays as much as we can.