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....
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....
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