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!
Camden is feeling great. He is active, happy, and loving his sports. He has been alternating his soccer and baseball practices. His first baseball game for this season is tomorrow night. His first outdoor soccer game for the Spring is on Friday. He loves every minute of it and we intend on keeping it that way.
Just to quickly update you. In March, on a MRI they found a lesion on Camden's spine. They reviewed an older MRI from August of 2018 and the lesion was there then too. The confusion falls with the improvement of scanning technology and as the technology improves, so does the clarity of images. We did a full body scan on Tuesday. The following findings have NOT been discussed with Camden. Ron and I would be happy to answer your questions when Camden is not present. We need him to remain positive, strong, outgoing and devoted to the things that he loves. The scan did show uptake in the area of concern on his spine. WIth that being said, it does not automatically indicate malignancy. There are some benign possibilities that will also have uptake, as all the scan is doing is looking at active processes. Many kiddos who have endured the aggressive treatment that Camden has will down the line end up with benign bone tumors. It is reassuring that the area of concern has NOT grown or changed. It has been 5 weeks since this area was brought to our attention by MRI and it was also seen on comparison studies from 6 months prior. Neuroblastoma is typically a very fast growing cancer, especially recurrent or relapsed. All of his bloodwork and urine markers are in a normal range. We will be speaking with his doctor again today to further discuss options for moving forward with either a very risky and painful biopsy or continued monitoring via scans. His scans are being sent to his oncologist in Boston for further review. We are remaining positive and optimistic that this is just another bump in the road. In the meantime, we ask that you add Camden to your prayer lines and ask that you and your prayer warriors keep praying for him. Camden has already won this war and we are not letting up now. We are grateful for your love and support. (This photo is a few months old) xoxo💖⚽️🙏🏻💖⚽️🙏🏻
Hello friends, family, and Camden's Crusaders. I wanted to come visit you. Camden's scans went smoothly. The results of his body scan were all clear. There was a new nodule found in his lung and we are still monitoring the nodule in his liver. We had to have a repeat CT Scan performed (3 months after original) of his lung and upon rescanning, the nodule was gone. (either missed or absent). We will continue to monitor him.
Camden is doing really well. He continues to play year-round soccer and just tried out for a premier soccer team and made the team. So, moving forward it looks as though we will be doing both TRAVEL and PREMIER soccer. We will see.
Camden is also wrapping up the baseball season. His team has grown tremendously over the season. Cam has played all positions. As you can imagine, it is amazing to watch him play.
The end of the school year is approaching. Not to quickly, but it is approaching. The last day of school is June 22. I can't wait to spend my summer with Camden and Emma.
Camden turned 10 on May 22. Can you believe it? 5 YEARS since diagnosis.
You all remember his 5th birthday. I know you do. He turned 5 during his first round of chemo and shared your love through endless cards, gifts, riddles/jokes. balloons, etc.
Thank you for supporting us on this journey. Here's a picture of our handsome boy.
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