Nephroblastoma- Wilms' Tumor Awareness 

It was sometime around November 2021, that I felt a large lump on the left side of her belly. I knew there wasn’t anything else other than a kidney on the left side because I knew the appendix and gallbladder were on the right. So, as I usually do, especially as a first time mom, I went straight to WebMD. Of course I saw the worst on there. I remember telling my mom, “What if it’s cancer?…What if it’s Neuroblastoma? What if it’s Nephroblastoma?” I kept thinking my baby had cancer and I ended up talking myself out of this spiral.. I remember telling myself, “Seriously Abbie? What are the odds that your child has one of these rare cancers?” No type of cancer even runs in the family and definitely not any childhood cancers. Two months later, on January 27, 2022, I took Blakely to her nine month wellness check up. She was healthy and perfect then. I had kind of forgotten about the lump. However, right before the doctor left the room, I caught a case of word vomit which came out of nowhere and I said, “Can you feel this lump?” I had no intention of mentioning it going into the appointment and can only give praise to God for that. Our wonderful Pediatrician felt it and immediately took action. She scheduled us for an ultrasound at Children’s (CHNOLA) for that afternoon. She never made me feel like a crazy new mom and also never ever made me feel like I needed to panic. Even after my webMD rabbit hole..I never once thought it was cancer. During the ultrasound, I knew something was wrong when the actual radiologist walked in the room in the middle of the ultrasound. The tech was just as shocked. She took more pictures and left. Ten minutes later our Pediatrician called. She said a lot, but to this day, all I remember hearing her say is, “You’re about to meet a lot of different doctors. Is Blake there with you? Give him the phone.” She was right. We eventually made it to an emergency room, room 16 to be exact. How could I forget? I was holding Blakely and she was just squirming to get to something. So, I turned around and saw a llama picture on the wall. In the middle of all this chaos, all my baby wanted was to go see that llama picture... Room 16 is where our life officially changed. Blakely had just fallen asleep on my chest when the doctor came in to show us the scans. She hadn’t said the word yet but I felt it coming. Inside my head I was a child throwing a fit, yelling “No, no, I don’t want to do this.. I don’t want to hear this. No!”  Then she said it…I hugged Blakely while crying as quietly as I could so I wouldn’t wake her up. Blake put his hand on me and laid his head on the bed. Everything I read on WebMD..EVERYTHING that I convinced myself wasn’t true, was true. At this point they weren’t sure if it was Neuroblastoma or Nephroblastoma but they told us to pray that it was Nephroblastoma.  Nephroblastoma is kidney cancer where Neuroblastoma effects the brain but can present on part of the kidney which is why they couldn’t be 100% certain at the time. That night, I texted everyone I knew to pray. The next day they gave us the official diagnosis, Bilateral Nephroblastoma (AKA Wilms’ Tumor.) It was cancer in both kidneys. A tumor the size of a grapefruit on her left kidney, which is what I was feeling. Then on the right side, a smaller Nephrogenic rest which is what eventually becomes a Wilms’ Tumor.  She then had a CVC placed in her chest and began weekly chemotherapy. After six weeks of chemo, she underwent surgery for a full left nephrectomy and a partial right nephrectomy. The surgery was rough! Blake and I will never forget seeing her for the first time after her surgery. Doctors told us the incision would be about five to six inches down the middle of her stomach. We both remember thinking, “oh that’s not bad,” but we both forgot how small a baby's belly really is. Blakely didn’t eat or sleep for 36 hours! For me, it brought me back to those same sleepless nights in the hospital when she was born. So lonely and quiet..with no choice but to sit in all your thoughts…Just waiting for the sun to come back up and to have people to talk to. I will never forget Blakely's little face when she stood and took a few steps as her daddy helped her once she felt better.The little noises she made or the pain in her eyes. But, she pushed through it and  I watched in awe! I saw pure strength and determination pour out of our small, ten month old baby. She continued chemotherapy for another 22 weeks. Vincristine and dactinomycin. The doses were increased every time. To outsiders, Blakely seemed perfectly healthy and happy. But Blake and I noticed everything the chemo did to our daughter. Blakely thrived in this “new normal”. At this age, she didn’t really know anything else except the life of a child with cancer and she never, ever stopped smiling. Which made us even more desperate for a normal life. Desperate to get our baby back. If I had a dollar for the times we said “I can’t wait to see the real Blakely” we’d be rich. On July 27, 2022, she finally got her day. She received her last round of chemo and rang the bell! It was beautiful. But as a parent..the fear didn’t go away. We still had her end of treatment scans to go and any cancer parent will tell you about “scanxiety.” The anxiety you feel with scans are crippling. It’s as if we relive the day she was diagnosed all over again. Those scans determine the end or the beginning and the thoughts of starting all over again come pouring in. On September 1, 2022, we got the phone call. Clear scans. No tumors. Our girl is in remission. Praise Jesus! Blakely will continue having scans every 3 months for a year and then every 6 months until she is 3. We love seeing the real Blakely and all she has to offer the world now that she is back to herself. But…The fear will never go away. This normal life is different from our original normal life. Every fever, every cough makes your heart sink for a second. We will continue to praise God and be thankful that our sweet girl is healthy and finally getting to be a normal child again. Blakely has been through more than anyone should ever have to in her first year of life yet, she continues to wake up with a smile on her face. Her tenacity and love for life inspires everyone around her. 

- Blakely’s Mama