“After a perfect pregnancy, Luke was born on December 9, 2021. The nurses put him on my chest, and then immediately took him away ‘to clean him.’ A nurse then told me not to worry but his arm was swollen. They said it probably broke on his way out. They gave him back to me, and Riley and I held him and soaked in the moment. Shortly later, they came in to do X-rays. We met with several different doctors with several different opinions (ranging from ‘The lower arm isn’t connected to the elbow’ to ‘It’s a cluster of veins’) during the day.
Around 3 p.m., a doctor came in and told us Luke was being transferred to UAB NICU in about 20 minutes, but I had to stay at St. Vincent’s for observation for 24 hours. Obviously, this meant Riley would be going with Luke and I’d be staying alone, just a few hours after having my baby. This was the second-worst moment of my life. While at UAB, they did several tests—MRI, ultrasounds, and more X-rays. They speculated but still didn’t have any solid answers for us.
On Saturday morning, we were transferred to the Children’s NICU and told they were going to do a biopsy of the mass that would require anesthesia on Monday—but for us to just enjoy our weekend with him in the NICU while we wait. Our NICU stay was a blur looking back at it, but I remember praying a thousand times for God to please just give me the chance to be this little boy’s mom. The biopsy went well, but we didn’t receive any results the same day.
On Tuesday, Dr. Johnston, the oncologist, walked in to give us the preliminary biopsy results. She told us the mass appeared to be a cancerous tumor. We were discharged and sent home to follow up outpatient. This was the worst moment of my life. We followed up on Friday. Dr. Johnston told us Luke had a rhabdomyosarcoma tumor on his arm. The cancer could be genetic, but most likely it is a random mutation—she emphasized I couldn’t have changed anything during my pregnancy to prevent this. The best treatment would be amputation and chemotherapy.
The following Monday we met with Dr. Kadchinski, the orthopedic surgeon. She explained why an amputation would be necessary, ‘The tumor is growing all around and between the bones, resulting in the bones being separated.’ It would be impossible to remove all of the tumor and leave behind a functioning arm. The only question would be if it could be taken at the elbow or if it would have to be taken at the shoulder. In growing children, amputations need to happen at growth plates (the joints).
The following Wednesday, we went for a CT scan to see if the cancer had spread outside of Luke’s arm. We met with Dr. Johnston and Dr. K in the afternoon to go over the results. Fortunately, the cancer had not spread and is localized to his arm. The plan was for Luke to do two cycles of chemo and then check the tumor’s size. Hopefully, chemo would shrink the tumor enough so the arm can be removed at the elbow. They would do surgery and then we would do a few more cycles of chemo.
On February 7, 2022, we went back for Luke’s scans (MRI, CT, PET). He was almost two months old. We received news! The cancer still had not spread further and the tumor was smaller. However, it was not quite small enough to do the amputation at this time. We would do two more cycles of chemo—total of six more weeks—and then the amputation regardless. They could potentially amputate at the elbow now, but there would be a high risk of not getting all of the cancerous cells, which could lead to more trouble down the road.
We were slightly bummed we couldn’t move forward yet, but we trust the doctors are guiding us to the best decision for Luke’s long-term success. We are so thankful the tumor is responding to the chemo and shrinking, and the cancer isn’t spreading. We are currently in our last pre-surgery cycle. After the amputation, we will be looking at two to four cycles—six to twelve weeks—of chemo, and then hopefully, finally have a cancer-free baby.”
Read more stories about childhood cancer here:
‘I’m so sorry I can’t take this away.’ He looked up at me with absolute perfect clarity. ‘It’s okay.’: Parents ‘astonished’ by infant son’s miraculous response, lose him days later to rare brain tumor
‘Does it look too big?’ Our perfect, happy, healthy baby boy had a belly full of tumors. Cancerous tumors.’: Mom’s newborn diagnosed with Neuroblastoma, says ‘every little moment’ with loved ones is a ‘reason to celebrate’
‘My son, this chubby baby, is currently on chemo. He has cancer. He can’t be in this waiting room.’: Mom has ‘immense guilt’ for every mother experiencing loss, childhood cancer treatments now that son is healthier
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