Camden's Champion Challenge
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!
Prayers for Camden
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💖⚽️🙏🏻💖⚽️🙏🏻
Camden turns 10
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.
It has been a long time. You guys, Camden is getting so big. I wanted to share with you that he got braces on Friday. To many, its just braces. To me: it is another milestone. Braces to correct ADULT teeth. I look at his face and just melt. I am so proud of the young man he is. I also think of you guys every single time scans start sneaking around the corner. That scan-xiety is still there. Its real. I think of you...because it is YOU that held me/us up and kept me/us from falling during so many of Camden's battles/obstacles. I am sorry that these posts come in times of need. Scans are just a confirmation of what we already know. He is a living miracle. He is healthy. Claim it with me.
When we aren't here posting, it is because we are maximizing our blessings and life's gifts, enjoying our family time, building memories, teaching lessons, and growing from our mistakes. Camden's scans are next week. 3 days of hospital visits: Tuesday/Wednesday/Thursday. His big body scans are on Valentines Day. Send Camden some love that morning. (I know you will). He will be in scans at 8 am.
AND....his braces are gold. YUP gold. It took a lot of convincing but I gave in. He is ready for any rap video. Who wants to make a Camden rap video? He did promise that this would be the only time he gets any gold accessories put in his mouth. Oh well...don't sweat the small stuff. He's got a cute face either way. One more round of 6 month scans and then we graduate to 1 scan, ONCE a year? Did I hear myself say that? Thank God!!!
🎗🎗 CHILDHOOD CANCER MONTH! 🎗🎗
In honor of Camden and our circle of pediatric oncology friends who have won the fight, are battling for their lives, our those near and dear to our hearts that have earned their wings, we have decided to re-offer our Camden's Crusade shirts. Shirts will be available for sale during September for $10.00 each. Let's honor Camden this month!
Shirts can be delivered if necessary or shipping cost may be added. Available sizes: Youth S,M,L or Adult S (limited),M,L,XL,2XL,3XL
SUPERCAM bracelets: $2.00 each (Adult or Child)
It all starts with awareness!
So, I am having a hard time figuring out how to upload Camden's clear scans video. Apparently I have to upgrade his website, etc. So in the meantime, know that we received preliminary results that his scans were unchanged from last time (clear). About a week later, we found out that his heart test improved from last year. We still have not heard any results from his pulmonary function test (yes, believe it...not impressed). Hearing test: they always give us the results while we are there: that is unchanged. Camden is doing awesome. He started FOURTH grade yesterday and I just know that he will have a great year. He has an amazing teacher and will make lots of new friends this year. He is still playing soccer and loving it. UConn Hockey is starting up soon and we will be there...
Little Emma started FIRST grade. Can you believe it? She had a great first day back too! Emma is doing cheerleading and hip hop this year. We continue to be grateful everyday of the normal things that Camden and Emma participate in. Thank you for your continued love, prayers, and support.
Well, we now know that Camden has the inherited selective hearing gene. Despite me freaking out that we'd be leaving with a script for hearing aids, I was fooled. Camden passed his hearing test. It was explained that most of us speak at a 50-60 dB. Camden had 96% accuracy with R and L ears at 35 dB with 12 year old vocabulary. His high frequency hearing loss still exists, but it just means he can't hear the birds chirping as well as we can. No intervention required other than visual compensation.
*****UPDATE: We arrived for his isotope injection at Hartford Hospital. We weren't on the schedule. Neither was our scan for tomorrow. So we have been rescheduled for injection on Wednesday afternoon and scan Thursday morning. I believe things happen for reason and the right people will be there when we need them the most!
Here we go again: Prayers please!
CONFIRMATION of HEALTH SCANS!! Camden will have a BUSY week. Please keep him in your thoughts and prayers!
-Monday: Audiology and Isotope Injection for body scan
-Tuesday: Body Scan, Pulmonary Function Test, and Clinic for blood and urine analysis.
-Wednesday: day of giving thanks
-Thursday: EKG, ECHO, CT scan, MRI x 2 for abdomen and pelvis
This workup is Camden's ONE YEAR OFF TREATMENT tests. 4 more healthy years and we can claim CANCER FREE! We got this. Thanks for your prayers and support!
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