We had a rough Sunday morning.  Physical Therapy had to clear Camden for discharge home, which meant getting out of bed, walking and managing a flight of stairs *even though sleeping on the 1st floor was an option.  Cam battled through the pain and used me as a resting point as he worked his way up the flight and back down.  Cam had a lot of pain afterwards, which required medication that comfortably put him back to sleep.  That afternoon, we made the decision to venture home from Boston.  

Post-Op Day 1: 8/17/19
Cam was in a good amount of pain last evening. He was/is having muscle spasms at the surgical site (expected but awful). The pain medication (pretty heavily medicated) caused nausea. It required some balancing out of meds and some momma love to get him comfortable without being snowed from meds. With time, he was able to get comfortable and sleep. He went all night without the big gun narcotic (which was probably the culprit of the nausea). He slept great. He wasn’t able to move his body without pain yesterday (even the slightest inch of movement). This morning he was able to roll onto his side a little to show the nurse practitioners his incision [which is dressed with a 💙 shaped dressing]. Today is going to be the day to trial moving more. The spasms continue. He is eating and drinking. My plan is to transition to oral meds, remove the foley and trial sitting [maybe standing, possibly walking???]. If all goes well, hopefully we can head home tomorrow.
To help you to understand what Camden endured in the 7 hour surgery yesterday, I’ve attached a few pictures for an explanation.

Posted by Ron:

Yesterday was full of Pre-Op appointments. They check Cams overall heath and confirm he is physically capable of withstanding the surgery. He did amazing as always. In between appointments he was able to FaceTime with his good friend Chris D. He has the best group of friends. He draws so much strength from them.
Jess had her questions carefully laid out for the surgeon. Sometimes I sit there and smile inside after the 3rd or 4th question. That is when the doctors more often than not casually glance over at the notebook in her hand to find a list of questions. They are often surprised and sometimes caught off guard by how in depth she gets with her questions. There is not a better advocate for their child in the world. Those of you that know Jessica, understand that to be fact. Camden’s initial Oncologist Dr.P always came to our appointments with ample time. If it wasn’t me or Jess, it was Al or my dad with the questions while we were in patient. Noni and Nana were busy making sure their little hero was comfortable and had plenty of tickles or leg rubs. The kid loved having his legs rubbed. As far as the appointment with the surgeon. It went well. There were a few items that were not made completely clear to us prior to today. We walked away with the answers we needed. Camden walked away eager to put this behind him. Not scared or worried. Maybe a little anxious. His primary concern at this point is which soccer cleats he wants. Camden loves his soccer cleats. 
As we drove home we updated our parents. Jessica went over her notes again to ensure we got all of our answers. We stopped at Al and Patrice’s to pick up our little Emma. Emma wanted one thing when we arrived, Camden. That’s all she wanted. To see her brother and make sure he was ok. The impact this entire journey has had on Emma oftentimes gets overlooked. They have such a strong bond. They have their moments like all siblings. They also have moments I’m sure some siblings never experience. Emma is such a caring and loving little girl. It’s going to be very hard on her this weekend knowing that her big brother is going through another surgery. She will handle it with the same grace she always has.
Thank you again for all of your prayers, thoughts, positive vibes and kind words. We will be sure to update everyone Friday. His surgery is slated to begin at 7:30 AM and last 2.5 to 3 hours.

I am sorry for the late update, as always...I am so much better at updating everyone who follows my Facebook page.  

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!