Carson Lewis

First post: Jan 27, 2018 Latest post: Jan 28, 2022
I’m spending the night with my son at the hospital. The last time I did that we were at GBMC and it was 4/4/01 when he made me his mother.
Now we are at Johns Hopkins and he is receiving his first round of chemotherapy.
Let me share how we got here.

Mid December Carson started complaining about mild pain in his right shoulder. As the days went on the pain got progressively worse. On 1/11/18 we had his annual check up with our amazing pediatrician, Dr. Diana Fertsch. We all felt he most likely pulled or tore a muscle. Dr. Fertsch had me take him for an MRI.  Carson and I went to Advanced Radiology on Tuesday, 1/16/18 and he had an MRI.

At 10:30pm I received a call from Dr. Fertsch explaining that Carson did not pull a muscle but that there is a mass in his right humerus. She explained that it could be many things but that she has already talked to her colleagues at Johns Hopkins and that she would like for us to go there at 8am the following day to meet with Dr. Adam Levin.

A little before 8am on Wednesday, 1/17/18 we had the pleasure of meeting Dr. Levin. He came out to the waiting room to assure us we would be seen shortly. He asked Carson a few questions about his pain and explained that we would be meeting with him and several of his colleagues that day.  I did my best not to overthink any of the attention we were getting so quickly. After all, this is Johns Hopkins! That’s what they do, right?   

After a bit of an issue with our insurance we were sitting with Dr. Levin while he explained honestly that they were fairly certain that the mass in Carson’s right arm was osteosarcoma.   He explained this is a very rare tumor and that we were in the right place as most of the 1400 cases reported a year ended up at JH. We later learned that the type of sarcoma Carson has is even rarer. About 600 are reported a year.

After talking with Dr. Levin we walked over to meet with Dr. Pratilas and Dr. Kao and their team in Pediatric Oncology. While I’m still trying to wake up from this obvious nightmare, they are explaining to us how their team will be treating Carson with Chemotherapy before Dr. Levin preforms surgery. The plan is that the sarcoma will be treated like a turtle. Dr. Pratilas’ team will first kill the turtle with chemo and then Dr. Levin’s team will remove the shell before reconstructing Carson’s shoulder and humerus.

Um... wait! Deep breaths while being struck with a Tsunami of information. I’m still back at Dr. Levin saying they suspect osteosarcoma.  I speak up, “this could still be an infection or a cyst, or a non-malignant tumor.” Just say’in.   The response? “Yes it could, but it’s not.”

Thursday morning, 1/18/18 we have a CT scan and get phenomenal news. His lungs are perfect! No sign of cancer!!!!!!

Thursday evening, 1/18/18 we have the biopsy and it’s confirmed. Osteosarcoma.

The following days are full of tests to get more information about the sarcoma while we wait for the full biopsy from the pathologist.  And to get a baseline on certain things like hearing and his heart as chemo will likely damage those areas and it’s important to know where we started.

More good news, Carson’s hearing is off the charts! He has excellent hearing. And now the gig is up... he has just been ignoring me all these years. Lol.   More importantly, we also learn that their are no other “hot spots” anywhere else in Carson’s bones. We are fighting only one mother effer!

So now several things become crystal clear. Carson’s strong will? The spirit in him that has always made him a challenge AND a joy? It all makes sense now. He is just the person to kick this cancer’s ass!

And the last four years of my life? All the stress, the disappointment, fear, and drama? All the strength I built was all to help Carson kick this cancer’s ass!

We have this! God has this!
And if we get weak and drop it for a minute, we have an army behind us made up of family and friends that are waiting to pick it up and kick it around until we are strong enough to fight again.

So as I watch my 16 year old boy sleep while chemo is dripping through a port into his body, I remember that day on April 4, 2001. I remember Dr. Bausik handing me this amazing, beautiful miracle as she spoke, “ you have a beautiful baby boy and he looks just like Michael.”

Look out Cancer! This mother isn’t giving you her miracle.