Here's the scoop since the last update:
We had positive uptake on the PET Scan. His oncologist wanted short interval imaging, which we did with another MRI 6 weeks post PET Scan. On this repeat MRI, the S2 lesion grew significantly. We had not seen this coming, being that it had been stable for so long. Due to the growth, we scheduled a biopsy with IR (interventional radiology) at Hartford Hospital.
This intially unfolded rather quickly. Camden's last day of school was June 13. Camden celebrated his graduation from Tolland Intermediate School. Immediately following his ceremony, we were in the car heading to a 12:30 appointment with the surgeon. The following morning, Camden was in surgery for this biopsy. The pathology results took about a week (torture). BUT...worth the wait. The results came back BENIGN which surprised everyones. How thankful were we that Camden wasn't heading back into the hospital to immediately initiate chemo again. His oncologist suggested that we obtain a second opinion with a specialized pathologist. His specimen was went to a pathologist at Brigham and Women's Hospital. A few weeks later, he confirmed the diagnosis as a benign tumor. The next steps were meeting with surgeons. If the biopsy was deemed invasive and risky, what would the removal of this tumor be like? We consulted with our local surgeons at Connecticut Children's Medical Center and Hartford Hospital. They were so informative and wonderful, explaining their approach on how they'd undergo the procedure. If you've followed our journey, then you know how my brain works. I needed confirmation. So...my family and I researched the top surgeons in the United States and they were right under our nose. We scheduled appointments at Boston Children's and Sloan Kettering in NYC and hit the road. We learned so much about this type of tumor, all the while...keeping things in perspective. Ron and I talked about how "devastating this diagnosis would be to the average person." We felt like we hit the jack pot. A benign tumor...our prayers were answered. We totally got this and are so thankful for a benign tumor.
1. It is very RARE.
2. ONE in ONE million people will have this
3. It can metastasize to the lungs, which they can remove.
4. A small percentage of tumors can be malignant and there's no cure.
5. Most individuals are between the age of 20-40 when having this diagnosis
6. Despite being removed, it can grow back.
HOWEVER: Neither Boston or NY would consider performing surgery on Camden without their pathologist reviewing the slides. Being that this tumor is that rare, they needed to rule out several other similarly close tumor types. SO...The slides moved on. This was the painfully slow process. We had them sent to Boston and weeks later, received the 3rd confirmation of diagnosis. Long story short. We have chosen Boston to perform the surgery and despite me begging and pushing for a quick date for the procedure, it will not happen soon enough. Our hopes were for Camden to have surgery in June...in July...so it wouldn't impact school or soccer. Unfortunately, his surgery will be in August. His pre-op appointment is August 13 and surgery will be August 16. We know he will remain inpatient for a few days following surgery...then home to recover. I will update with details as we learn more.
Please continue to hold Camden in your thoughts and prayers. Pray that this surgery goes perfectly and that Camden bounces back quickly. Thank you!