Dec 29, 2017 Latest post:
May 12, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Our story starts a couple of months ago when l visited a chiropractor for what we thought was some nagging back pain- likely caused by getting two kids in and out of car seats, into strollers, bathtubs, etc. my chiropractor noted some irregularities in my pain description and sent me for an MRI. On Friday, 8 December, my chiropractor called and discussed the results of my MRI and explained why he could no longer offer me care for my pain.
The MRI had revealed a dangerously thin thoracic element (T7) that was also fractured and was destabilizing my spine. In addition, lesions were noted throughout the image- across the spine, ribs, lungs, etc. As you can imagine, this news hit us like a ton of bricks and left us with far more questions than answers. This was also a Friday evening- so we made it through the weekend (with the help of a snowfall, cookie baking, and family) and went into to see my family doctor that Monday.
To say my doctor was shocked is an understatement- he seemed unable to speak. I️ told him I found the report upsetting and he confirmed that he did too. He said he would pass it to my local hospital’s “tumor board” and we should have a direction the next day. We waited. Shopped. Ate. Kissed our babies :)
The next day word came back that we should see a brain and spine specialist in Annapolis the next morning and we were pleased to have a way forward. However, when that morning came we got a call on our way to that specialist- he had reviewed our images and told us the only person to see would be Dr. Daniel Sciubba at Johns Hopkins. We called Johns Hopkins but realized we needed to be seen immediately so at the urging of our family, we went to the ER and were told it would be about 8-10 hours before we got admitted. Luckily, it wasn't that long- the staff in the ER was able to get us into a room quickly and start a series of tests and new imaging.
Once we were admitted to the hospital things moved very quickly- the neurosurgery staff had me stop eating as they likely knew I️ would have surgery as soon as Dr. Sciubba could fit me in. As it turns out-that’s exactly what ended up happening; the next morning we met Dr. Sciubba who asked- “is this the famous Carolyn Cave?” He had been hearing about our images and about how urgently I️ needed care- he explained our options, and 30 minutes later we were in surgery.
For me, the operation was fast- but I’m sure to Matt and my mom in the waiting room it felt like forever. Dr. Sciubba was pleased with how everything turned out- but did confirm that the tumor he removed from my spine was a little difficult. He was happy with how the spinal fusion looked and we were off to recover, a work still in progress.
Full Pathology of the tumor takes a long time at Johns Hopkins because of the process they put the tissue through, and the number of people who research, study, and report their findings. We hope to have answers as to what kind of tumor this was/is, where did it start, and what is the path forward.
Obviously, this has been a frightening time for our family. We have been blessed with a very giving group of family and friends who are always willing to step up and help.
I feel very lucky to be living so close to so many wonderful medical institutions and I know my team t Hopkins is working to provide us with the very best research, treatment, and options. Looking just a short way back, I am astounded that I went from an MRI on December 7th, into surgery on December 14th- hope the rest of my treatment is as speedy!
Thanks for being here and reading- please send us your prayers and support- I will keep this site updated and hope to have more news to post soon!