On Saturday February 20th, Burkley began having blood in her urine. I chalked it up to a UTI, but thought it was strange she did not have any other typical urinary tract infection symptoms. I did notice her abdomen was distended and firm on the left side but realized she hadn’t had a bowel movement in a couple of days, so I assumed she was constipated. I gave her some medicine for constipation and since she had no complaints with her discolored urine the pediatrician’s office instructed us to come in on Monday. I went to work, and Pate took her into the pediatrician first thing Monday morning. Our wonderful pediatrician’s office, Riverside Pediatrics, quickly realized it was more than constipation or a UTI and sent Burkley for a STAT abdominal U/S and bloodwork.
Directly after the scan, the pediatrician called and the ultrasound was a parent’s worst fear, a large 17 cm mass overlying her left kidney. They told me to pack and bag and head to MUSC Children’s hospital. We are SO fortunate to have Pate’s cousin and one of our dear friends, John, as a radiologist at our local hospital. I had texted him to alert him that Burkley was having a STAT ultrasound and he made sure to personally read the ultrasound. John knew how devastated we would be at the news, so he came to our house to explain the ultrasound in more detail. He told us that the mass could be something called a Wilms tumor or a Neuroblastoma. At this time Pate’s mom and dad were also at our house and John held our hands and said the first of MANY prayers for Burkley and our family.
Once at MUSC, Burkley had a chest, abdomen, and pelvis CT. For those who are like me, a 17 cm tumor is hard to visualize in your brain, but the oncologist brought the image up for me to look at. It is completely heartbreaking to see this huge ugly tumor literally take up your child’s entire left side of her abdomen. For reference, 17 cm is about the size of a large cantaloupe. A big ugly nasty looking shaped cantaloupe in my sweet 3-year-old little girl’s belly. Wow, talk about absolutely gut wrenching. From what radiologists could tell on scan, the tumor had taken over the entire left kidney and the adrenal gland making them completely non-functional. They also said the tumor had ruptured at some point and invaded a few local lymph nodes adjacent to the tumor. Based on the cancer being in her lymph nodes, Burkley was confirmed to have stage III cancer.
The VERY good news was they thought the cancer appeared to be a Wilms tumor, but without a biopsy this was still not certain. Wilms tumor is definitely what we wanted. There was also no sign of cancer on the lungs as they were concerned there might be. The surgeon also encouraged us to not be afraid of the term stage III cancer because in kids with cancer, the outcomes with Stage I and stage III with Wilms tumors are essentially the same. We take great comfort in this knowledge.
The surgeons decided the next best step was to take Burkley to surgery to remove the tumor, the left kidney, the left adrenal gland and the affected lymph nodes. Dr. McDuffie, the surgeon, was able to get all of the above out. There were a few lymph nodes in her mesentery (the tissue that supplies blood to the colon) that he couldn’t get without compromising blood flow to the colon. He’s not concerned with leaving those. They also placed a port in Burkley’s chest as a way to administer chemotherapy.
Since the initial ultrasound the main question has been: Is this a Wilms tumor, meaning it originated in the kidney or did it originate in the adrenal gland which is the gland that sits directly on top of the kidney. A Wilms tumor is a "better" cancer, meaning it is easier to treat with a higher success rate of treatment, while a tumor from the adrenal gland CAN be much more difficult to treat (more on that in a minute). It was impossible on the ultrasound and CT scan to tell where the tumor had started, but during surgery it looked like a Wilms tumor so we were very hopeful for this. Unfortunately, pathology confirmed it is NOT a Wilms tumor, but instead a tumor from the adrenal gland. This was a gut punch to say the least.
We’ve gotten all the results back from pathology, bone marrow biopsy, and MIBG test and unfortunately, they were not what we have hoped and prayed for these last few weeks. We have an official diagnosis of Stage IV high risk neuroblastoma. We know this now because: 1) the pathology came back unfavorable and amplified 2) the bone marrow biopsy was positive for metastasis to the bone marrow 3) the MIBG scan showed there is likely metastasis to lymph nodes above her left clavicle.
Burkley will start chemotherapy. She is now categorized as High Risk Neuroblastoma so she will have what they call “intense chemotherapy” meaning all her chemotherapy will be completed as an inpatient. We will go every 3 weeks for chemo and stay inpatient for 5 days. We will complete 6 cycles of this every 21 days over 4-5 months. At somepoint during chemo, she will have a procedure to extract stem cells. They will freeze her stem cells and then after chemo is complete, she will have 2 separate stem cell transplant. From what the oncologists have told us, this is going to be very intense and difficult stage in her treatment. She will have one transplant completed and then she will be hospitalized for 4-6 weeks as she recovers.
We will then repeat this step for a second transplant and 4-6 week hospital stay. Meaning just for stem cell transplants alone we are looking for 2-3 months of inpatient stays. Following the stem cell transplant she will have radiation once a day, Monday thru Friday for 4-6 weeks.This will be outpatient, but will require us to either drive to and from Georgetown every day (for those who are not familiar with the area, this is about an hour and fifteen minute drive each way) or utilize local lodging keeping us away from Wallace, home, jobs, and other family. After radiation, she will start immunotherapy treatment.
In all, these treatments will occur over the next 12+ months. We also discussed in length with Dr. Anca about enrolling in a clinical trial which would introduce 2 other treatments during this course treatment and would extend maintenance therapy for up to 2 years. We were able to read and discuss the clinical trial thoroughly and have decided to go forward with this portion as well.
As far as immediate needs, Gas and food are the big needs as they are constantly driving back and forth from Georgetown to MUSC (1 hr 15 min drive). Burkley’s mom is still working now, but eventually she will have to take a prolonged absence from work which will hurt them drastically financially.
Every penny goes directly to the family. Every donation is tax deductible when you donate through our page.
More importantly than financial support is your PRAYERS! Please pray for complete healing and restoration of Burkley’s body! Also pray for her entire family as they endure some of the most difficult obstacles a family could ever face.
Follow Burkley's Journey Here: https://www.caringbridge.org/visit/burkleyford