Camden Update: [warning: long post]
So many of you have been extremely patient, waiting for this update. Thank you for your messages and support, even when we didn't tell you much. We wanted to wait until we knew what was going on, until we have some answers. Once again we were stopped in our tracks.
We confidently went into this MRI with complete Faith that Camden was well.
His scan was 2 weeks ago today. We received the results on the Friday following scans. The results were as follows:
1. S2 surgical site of tumor resection: Normal post op changes, surrounding edema resolved. Sent to Boston for surgeons opinion.
2. New area of concern on S1 spine. This presents as a small, 4mm lesion that looks very similar to the S2 lesion that was removed in August. This lesion was NOT on the MRI done in June but WAS there on the MRI done in March.
3. New area of concern on pubic rami of the pelvis. Large enhancement, measuring 6 cm or roughly 2 1/2 inches. This could be 1 of 2 things: Relapsed Neuroblastoma or a bone/muscle injury. Labs were all normal. We waited for his urine analysis for Neuroblastoma to come back (through the Holiday days off) and those came back normal as well.
The only way to know if these 2 new areas are threatening is to do a PET Scan. Camden has frequent scans and when there is an additional scan that is not on schedule, it has to get approved by insurance. Insurance has 14 days to approve.
MRI results were sent to Boston for review by their tumor board. Camden's oncologist is very thorough. She reached out to the Interventional Radiologist and the orthopedic surgeon at Hartford Hospital.
Opinions are as follows:
1. The large enhancement is probable sports related injury. Rest and recover. Repeat images in 1 month.
2. The orthopedic specialist did not fully agree that it could be sports injury and suggests on moving forward with obtaining a full body scan.
3. Boston Tumor Board: We obtained these opinions today and they believe that the S1 lesion and the enhancement on the pubic rami are NOT neuroblastoma or any other tumor. They believe that what is showing on the MRI are areas of stress due to overuse from sports. They report that this is extremely common for young athletes and Camden was immobilized after his surgery in August which really puts him at a greater risk for injury. Boston suggests repeating the MRI in 3 months.
Ron and I truly rejoice in the positive feedback from these exceptionally skilled physicians. We have reconnected with his oncologist to establish a comfortable plan for scans and within a time that we all agree upon.
So, we are holding on strongly to the fact that Camden is well. Once again, he is our families Christmas miracle.
Please continue to surround Camden and all of us with your prayers, your positive energy, your love and light and all things related to wellness and healing.
Thank you. Much love....
It is that time again. Let's gather our thoughts, wishes, prayers and positive energy around Cam tomorrow. He will have his routine neuroblastoma MRI along with blood and urine analysis and in addition he will have the 3 month follow up imaging (additional MRI) from the [NO LONGER] pelvis tumor. Our faith is big! WE GOT THIS
Camden and Emma are now back in school. Yesterday was their first day. Both of them are in new schools this year. Camden is in middle school - 6th grade and Emma in 3rd. Camden is starting this week with shorter days. He was exhausted yesterday. We have his follow up appointment tomorrow with the surgeons. He has developed a small seroma near his incision. We will see what they have to say about it.
There’s no place like home!❣️
Cam is doing amazing! He’s been getting plenty of rest and staying as comfortable as possible. During the first few days at home, he was experiencing severe pain intermittently but overall was consistent with 5/10 pain. Emma, Noni, PS4 and his best buds have been keeping him entertained for the past few days. He amazes me! Cam truly is a champion and our very own little superhero! Thank you for your continued support and well wishes. We’re grateful!
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.
Camden is asking his supporters to wear a Champion shirt on his surgery date, August 16! Luckily, you can purchase Champion just about anywhere (Kohl’s, Target, Macy’s, Dick’s Sporting Goods, Walmart, Amazon). Think of Cam as you’re doing your back to school shopping. Send us your photos on August 16, so when Cam comes out of surgery we can flood him with your supportive pictures! ONCE A CHAMPION, ALWAYS A CHAMPION! Let’s do this!
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!
She's going to keep everyone up to date about my progress. Isn't she the best mommy ever?
Diagnosis: May 9, 2013
Surgery: September 2013
Transplant: September 2013
STRICT ISOLATION UNTIL
Radiation: November 2013
Antibody: January 2014
END OF TREATMENT
June 9, 2014
DFMO Trial: June 2014
(27 months of DFMO)
**FINISHED ALL TREATMENT
JULY 25, 2016
5 years from diagnosis!!
May 9, 2018
5 years from frontline!!
June 9, 2019
IN REMISSION: pending
(waiting for 5 year mark from maintenance).
Benign Tumor: June 2019