Ron and I aged 10 years in the past 24 hrs on top of the 40 years over the past 7 months...making us in our 80's not 30's.... Anyway...

Update is:  Monday is the CT SCAN of his LUNGS.  9:30 radiation...10:00 radiology, for a 11:00 procedure.  He will go under anesthesia and be intubated for clear and timely images of his lungs during sustained inhalation and exhalation.  Tuesday at 11:00 is our appointment with pulmonary for a pulmonary function test.  We will also have to see ENT at some point for his throat.  Looking forward to our "make a wish" vacation more and more.....

Please gracious God, get us through this!  Ron spoke at length with our oncologist and I spoke at length with the pulmonary doctor.  I feel like there are a few possibilities as to what could be taking place.  We went from progressive and fatal to treatable but we will NOT know until after some more testing which will take place on Tuesday!  Stay tuned and in the meantime, continued prayers for Camden.  Thank you for being here for us....Camden doesn't even realize how many people care about him!  Thank you and much love always.....

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!!!

Tonight, we have each other...i look around my house, clean but not spotless, evidence of a long day all around me.  Music playing, dancing feet, happy hearts, smiles and laughter....memories I could never forget and with every beat of my heart and every happy tear in my eye.....never forget, never taking a moment in time for granted.

Another long day...but it went well.  Camden, Emma, and I packed a lunch and had a picnic in Stafford by a pond...it was fun, but cold.  Cam is starting to get hyperpigmentation on his skin where he is receiving radiation. We got a new organic/natural topical lotion and a spray designed for damaged skin, including radiation burns/damage.  I am really excited about it and I think it will be great now and maybe eventually I can incorporate some new cool lotions into my reflexology work (feels like so far in the future...but haven't lost hope.  Camden is doing well with pill swallowing and today we converted a liquid medication into pill form.... Just wish it wasn't so difficult for him (mentally) to take meds....but at this point he has been through so much, can't blame him : (

Not much to report: other than we had a "normal and typical" weekend!  Like how all of you feel, it went to fast.  Camden said, "Mom, I think it is time to ROCK OUT the Christmas decorations!" I never decorate this early, but the fall leaves and pumpkins have been packed away and we will slowly start redecorating.  As you all know, for us, the holiday's will be all together different this year...in so many ways, but having the four of us together is a blessing in itself.  

http://www.youtube.com/watch?v=CbAFjZ-4ACU&feature=c4-overview&list=UUYhFvnOMu_JK-4APn_ENzUQ

See this link to watch a music video from CCMC. Camden couldn't be directly involved because of our precautions/restrictions and this was also filmed the day of our repeat transfusion...so Cam was laying low. You will see him briefly standing in a room holding a red "courage" sign next to me and Emma holding a yellow "hope" sign. It is REAL QUICK....keep your eyes peeled ; )

Everything is well at home. Glad it is Friday...

50 days into our 100 days of isolation!!!
10 days into our 20 days of radiation!!!
A PERFECT day so far!!  We all "walked" to radiation today. We did not have clinic, so it was a quick day at the hospital.  We are so proud of Camden...he is amazing.  We are going to start practicing swallowing pills, as he will need to for our next treatment after radiation.  Thinking ahead: we have repeat tests and scans coming up in the beginning of December....please gracious God you know my prayers by heart by now.... Thank you Jesus...and thank you crusaders! xo

We just got home from another long and tiring day...we have been asymptomatic status post transfusion....THANK GOD!! We will be watching him like a hawk tonight, however so far so good!  Another day of radiation in the books too!  Ron spoils the kids, i have soooo many legos in my house...yesterday was Millennium Falcon, today the Malevolence....and princess ones for Emma....BUT they deserve a treat after these long days of being in the hospital.