Finally, the END of treatment scans. A special thank you to Samantha and the UConn Men's Ice Hockey team for their support over the last 2 years and for helping us create this video. We express our deepest appreciation to all of you, for your prayers, love and support during Camden's 3 years, 3 months of treatment. I am at a loss for words...how can I describe what we are all feeling right now? THANK YOU, thank you so much! Much love,
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Last night, in conversation with CCMC, we were provided different end of treatment dates and scans.
Last day of treatment has been moved from Sunday to MONDAY. Scans are NOW TUESDAY AND WEDNESDAY. Tuesday's appointments: 12-4 and Wednesday MIBG starts at 8 am. Please lift Cam in prayer. Scans and the days leading up to them are stressful. FINAL COUNTDOWN
Camden finishes treatment on Sunday night. He will take his LAST DFMO pills around 8:30 pm on Sunday. Can you believe that it has been 2 years of DFMO and 3 years + almost 3 months of treatment? What a victory! I am so proud of him! ******************SCAN DATES******************* MONDAY, July 25: 12:00-4:00 Contrast, wait 2 hours-CT SCAN MIBG isotope injection, and clinic for blood/urine TUESDAY, July 26: 8:00 AM MIBG SCAN Please pray and THANK GOD that these scans will be CLEAR too, for Camden has a lifetime of health ahead of him. Much love~ Yesterday, Camden had his monthly clinic appointment. As always, he had his blood drawn and had to leave 2 urine samples. Now we sit and patiently wait for the results. Camden's will take his last DFMO pills on July 24th. We are glad to announce that we will not have to finish this treatment in Massachusetts, as CCMC was able to continue this trial with another oncologist in place of Dr. Parikh. I am anxious to see how quickly Camden's hair and eyelashes will start growing in again. Do you remember how often we had to follow audiology due to the hearing loss associated with this treatment? Well, we will start seeing them again to monitor his hearing upon completion of this trial. I have to ramp up my use of Frankincense around his ears.
We met with his new oncologist. She was wonderful. I am investigating getting Camden into another trial and will keep you posted with the outcomes of that. Body scans will be the end of July and will be repeated every 3 months following for the next 2 years. We will also continue with cardiology and pulmonary follow ups. We all are looking forward to a great summer. Hoping that you all enjoy it too. Thank you for the support. I am so sorry for the lack of updates. I feel as though we may have lost a lot of the people who were routinely following this site. We have had a technology failure in our home. My apple computer needs to be serviced, my laptop will not even turn on (yes, its charged) and now I cannot update this site from my phone because the site is not mobile supported. So, it really has been a long time. I am truly sorry. All is well here and we are LOVING life.
Here is an update: Our boy just celebrated his 8th birthday on May 22. He is getting so big. It will not be long before he is taller than me. (I know that doesn't say much...I am all of 5' 1"). Camden is finishing up 2nd grade real soon. I am so excited for this summer and to spend time with both him and Emma. Next year brings him to a new school for 3rd grade. Cam struggles with change and gets anxious. (I believe that is related to having only adrenal gland). I hope that he has friends in his new class/new school. Emma turned 5 in January is starting kindergarten in September. My goodness, my little loves growing up so quickly. Camden just finished up his soccer season last week and has tryouts this week for Fall. He plays for a different town, but the league far exceeds the skills that are offered here. He loves soccer and inspires to be another Lionel Messi. We are in the midst of baseball too. Ron is coaching his team. I cannot express to you how amazing it is to watch him....whether playing soccer, baseball, or even just running in the yard. I still get emotional. We are so blessed to have Camden in our lives. We refuse to take that for granted. We were taking him to a chiropractor for routine adjustments. With insurance changes, we were forced to pause that for now. As well as Cam does, he still is weak. He isn't as fast as others, his stride is shorter and slower than others when he is on the field. We have started a strengthening program and can already see a big difference in his strength, coordination, and endurance. The occupational therapist in me gets mad at myself for having the expectation of him to not be weak. Really, he was bed bound for well over a year. Camden finishes his maintenance treatment coming up in July. He will be completely off ALL treatment. It is exciting and scary all at once. We will then start further regimens of detoxification (metals, underlying viruses, etc). This is what I have been waiting for. THIS MOMENT!! He will undergo a body scan in July at the end of treatment and then go back to scans every 3 months again (instead of 6 months). The medical community is not sure what is going to happen to these Neuroblastoma children coming off of maintenance. I hate it when they say, they don't know if the maintenance meds were prolonging the inevitable or if the drugs are taking Neuroblastoma a step further to a cure. We are still plugging along with our sugar free (as best as possible) and low polyamine diet. These are lifestyle changes. Of course, I am still using my essential oils too. Again, all of this will kick up a notch when he finishes treatment. Camden's oncologist is leaving CCMC and moving to New Jersey to take a research position. I cried when I found this out. I was so mad that he would leave us, then I realized that this man has served our needs and if anyone will help find a cure..it will be him. BESIDES, Camden will not need his services any longer and Cam will remain cancer free for the remainder of his lifetime. So we have until tomorrow to pick another doctor. (tomorrow is our next clinic day and the last time we will have Dr. Parikh). Please continue to pray for Camden. I know in my heart that you all haven't forgotten about him. I realize that many probably aren't coming here any more, but if you are...please continue to pray. Originally, we were striving to meet the 2 year off of frontline treatment mark. Which is June 9th. June 9th is TWO YEARS off of frontline treatment. (Ron and my anniversary). NOW....we have to restart our clock. Our two year mark starts all over because of coming off of maintenance. So now....we are focused on July 2018....then the 5 year mark where he can transition into survivorship...2021. WE GOT THIS! At our last appointment, we talked to his doctor about his risk of secondary cancers from treatment, the side effects on cognition, his heart, his growth, etc....This is where I have to TRUST that Camden has been HEALED! He was. He IS our miracle boy. And that, I am forever thankful for. I promise to update more often. Thank you for your support. Much Love.... Tune into radio channel 1080 AM to hear Camden's live radio interview with Coach Cav. He will be talking in a few minutes. Tune into radio channel 1080 AM to hear Camden's live radio interview with Coach Cav. He will be talking in a few minutes. Camden's blood and urine results came back normal. We are so grateful for the prayers and support. As we suspected, the results from last month were an artificial high, potentially indicating Neuroblastoma activity. This test is very sensitive and Camden is on a very strict diet 48-72 hours before the test (no citrus, no chocolate/vanilla anything, no coffee or tea (which typically is not a concern). The night before the test, we ate chicken marsala. We now know, after extensive research, that there is an acid in 8 types of edible mushrooms and wine (which is linked to the artificial high for these Neuroblastoma markers). There are several other foods as well that we will be more aware of. Needless to say, the anxiety is always there, but for the next 3 weeks (until the next test) we can come up for air and breathe. Happy Friday! Hope you all have a great Valentine's weekend. Show love to the ones that you love! 💗 We only have a few days to pull this off, but we need your help. We want to send some Valentine's Day cards to the staff on MS8 (Hematology-Oncology floor at Connecticut Children's Medical Center). We want to return the LOVE that they have shown us. Over the next few days we all will be scrambling to get our Valentine's together for our children and their classmates. Perhaps you purchase an extra box this year and allow your children to help. Lets flood MS8 with lots and lots of LOVE. Such a small token of appreciation for all that the staff on MS8 does for so many children on a daily basis.
We have our monthly clinic appointment this afternoon. Camden's blood work last month was good but urine markers came back whacky. Oncology was not overly concerned due to the clear scans. Many external factors (food, exercise, stress) can impact the results. Please join us in prayer that this test reveals normal numbers, indicating a blip last month. These results are the ones that we have to wait several days for. 🙏 Many prayers and much love! sorry: I can rotate a picture but not this video. It is straight on my iPhone, but not here. I would rather be snuggling Camden and Emma *whom I have missed while she stayed overnight last night at my parents. Thanks for understanding. Much Love
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MommyShe's going to keep everyone up to date about my progress. Isn't she the best mommy ever? Archives
September 2021
Diagnosis: May 9, 2013
Surgery: September 2013 Transplant: September 2013 STRICT ISOLATION UNTIL January 2014 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 |