While putting Alex to bed one evening we felt a lump on the back side of his left thigh. Alex hadn't recently hurt himself and didn't complain of any pain in that area, so we didn't think too much of it. After a couple of weeks, we decided to reach out to our Pediatrician, who advised us to come in to get it looked at.
January 6, 2023 Upon inspection, our Pediatrician didn't see anything too alarming - no discoloration, no pain, no other symptoms. We had the choice to get an ultrasound or, if we'd like, we could monitor it for a couple of weeks. We opted to monitor it for a couple of weeks. We'd proceed with an ultrasound if it didn't get any smaller within a couple of weeks.
February 11, 2023 We gave it a couple of weeks and realized the lump wasn't getting any smaller. After reaching out to our Pediatrician via MyChart, she ordered an ultrasound to be performed.
March 10, 2023 First quick ultrasound was performed at Bronson.
March 13, 2023 Our Pediatrician called first thing in the morning to let us know she reviewed the ultrasound. It showed that the lump was a soft tissue mass, not fluid filled. Because of this, they referred us to the Bronson Pediatrics Hematology/Oncology.
March 15, 2023 We met with Dr. Schwalm of Bronson Pediatrics Hematology/Oncology. She explained that an MRI has been scheduled for later in the week and that she had already reached out to Dr. Steensma of Spectrum Health Medical Group Orthopedic Oncology. She predicted that Dr. Steensma would also be ordering a biopsy to be performed. Within an hour of leaving Bronson we received a phone call from Dr. Steensma's office to schedule a virtual appointment for the following Monday and to tentatively schedule a biopsy for the following Friday.
To say everything was moving quickly would be an understatement!
March 17, 2023 MRI was performed. Then as a treat, we spent the weekend in Chicago enjoying swimming at the hotel, Legoland, train ride, Willis Tower, and Shedd Aquarium.
March 20, 2023 We met with Dr. Steensma of Spectrum Health Medical Group Orthopedic Oncology via virtual appointment. Having looked at the MRI he was certain it was one of three things: sarcoma, lymphoma, or desmoid. Based on his experience he was 70-80% certain it was a type of sarcoma. #GutPunch He then ordered a biopsy. The results of the biopsy would take roughly 4 business days to come back, but this information will tell us all of the information needed to develop the best treatment plan. After the biopsy we wouldn't see Dr. Steensma until treatment was complete, as he would be the one to remove the lump.
March 24, 2023 Biopsy was performed by Dr. Steensma of Spectrum Health Medical Group Orthopedic Oncology. The procedure was fairly quick. A small sample was given to their on-site Pathologist to review it under a microscope. Dr. Steensma informed us Alex has cancer. #DoubleGutPunch With the diagnosis of cancer official, a PET scan was ordered to tell us whether or not the cancer spread anywhere else in his body.
March 26, 2023 A PET scan was performed. We were home by 8pm. By 9:20pm, the results were in. By 9:30pm, Dr. Schwalm messaged us via MyChart that she's fairly certain the cancer has not spread but would need to confirm with the Radiologist in the morning. By 9:40pm, Dr. Schwalm messaged us via MyChart again saying that the Radiologist reviewed the scans and confirmed the CANCER DID NOT SPREAD YET! SWEET SIGH OF RELIEF! FINALLY SOME GOOD NEWS!
Now we wait for the official results from the biopsy to determine a treatment plan.
March 29, 2023 The biopsy results came in. Dr. Schwalm called and confirmed that Alex has rhabdomyosarcoma.
March 30, 2023 Alex went in to surgery to have a port placed. This is where they will administer medicine going forward. We met with Dr. Schwalm to go over the potential treatment plan starting the following week.
Last Monday, March 18, Alex had his port removed! Everything went smoothly with the surgery and we were home by mid-afternoon. He even wanted to go to wrestling practice, although bummed he couldn't participate.
He's had a great week (plus some) healing with no issues. His incision has healed nicely and he's had no complaints. This kid is a freakin' rockstar!
Last Friday his teacher and his classmate's parents arranged for the entire kindergarten hallway to clap him into school waving Mighty Alex pennants to show their excitement that his treatment is done. He didn't know how to react to all those amazing people cheering him on. 😂 Then his classroom had a day filled with pjs, breakfast, and a movie that Alex picked out. On top of that, our awesome neighbor Caitlin arranged for us and her youngest Andrew (Alex's bestie) to ride home in a SWAT vehicle! We are continually blown away by how much love, support, and encouragement everyone has shown Alex and all of us.
Now we're off to Florida for some much needed rest and relaxation!
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Incision looking good
SWAT ride home from school
Alex's Thor Port
Port removal surgery day
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