We had a longer day than expected, we are just getting home from CCMC. Camden's day started bad and is ending leaving us uncertain of how to think or feel...Camden still gets very fatigued and has shortness of breath. His oxygen saturation fluctuates from poor to good to normal...but WE NEED TO KNOW WHY IT IS NOT ALWAYS NORMAL (like it was before that blood transfusion). Tonight I am sending out a prayer request for CAMDEN'S LUNGS and all other organs for that sake. We still have not cleared the muddy waters from the TRALI incident and in fact it resurfaced with even the possibility of a diagnosis much worse, much much worse. We had a repeat chest xray today, an ECHO and EKG to see how his heart is responding to his difficulty with breathing. OF COURSE, pulmonary department said JAN 2nd for an appointment so that is NOT happening...much to late. Hopefully we will hear something different tomorrow. Its scary and the road bumps never end....Please, please pray hard for Camden!!!
|
Gramma Nanc
11/21/2013 08:43:45 am
Sending extra prayers for Camdens lungs and for all of you, just spoke with a friend in Florida and prayers are being sent from her also !!! I know it is hard but stay strong . continue prayers & Love :)
Walter Krauss
11/21/2013 11:33:16 am
Hi, Camden! My name is Walter and I work with your Aunt Monique. She gives everyone at work updates about how you're doing and told me about your website, so I thought I would check it out and say hello. Your website is so cool! I'm sure you probably know this already, but your Aunt Monique is always telling me how brave, smart, and kind you are. She is so proud of you! She also tells me you are a big fan of superheroes. Me too! I have a 1 year old son and we both went as Batman and Robin for Halloween this year. I've always liked Batman, but from what I've read and heard about you, I think you're my new favorite superhero....If you were a superhero what would you call yourself and what would your super powers be? What would your costume look like? How does Captain Camden sound or Courageous Camden? I'm sorry you didn't have such a great day today, but I would guess that it wouldn't keep Captain Camden or Courageous Camden from having a great day tomorrow and keep that wonderful smile of yours from lighting up the room like your mom wrote on your website. Well, Buddy, I hope to hear back from you, but don't feel like you have to write back. I just wanted you to know I think you're very special and know you will be going to a Red Sox game before you even know it. Comments are closed.
|
Mommy & Me
MommyShe's going to keep everyone up to date about my progress. Isn't she the best mommy ever? Archives
December 2019
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 |
RSS Feed
