POWER DAY... pre-op planning

It is MOMMA!  Simply taking over for a quick post before dinner.  We are sorry that we had such a lapse in posts, but those that know us, understand these gaps are to be expected in our busy life.


We left the house at 7:30 am and reported to the basement to Nuclear Testing... nice.  Em received an injection of radioactive high dose of liquid and had to sit around for an hour before it adequately traveled her system.  They took full PET scan of her body which included skeletal and soft tissue reporting.  We don't want areas to "light up", as that reflects inflammation and areas that display abnormal cells.  Em did this on her own, as they did not want us to go in the back for "exposure".  Try as she may, she hoped the technician would report what they saw, or preferably, didn't see.   Of course, they can't make any comments during the scan.  We left there without any indication of how the test went.


We reported to S20 to the hematology clinic for a routine blood draw, proceeded to X-ray for pics of her legs.  Went back up for check up and blood work results and all is well.  Her blood levels are good and in some areas a tad low, some "outstanding".  So, all is right with that.


In the midst of all this, THE POWER WAS OUT IN SOME OF THE BUILDINGS TODAY AT THE CLEVELAND CLINIC.  Not sure how often that happens, but it did present challenges for the next part of our day, which was to meet with Emily's surgeon and discuss his plans, review her MRI from January and compare to the one last week, look at X-ray films the old fashion way, not on the computer.  He was displaced and their team did a nice job fitting us in, in unfamiliar workspaces.  It was important to all of us that we had time to talk through options and understand the outcomes and as Todd says all the time, "manage our expectations".   Kudos to the CCF team to coordinate impromptu offices and sites to keep this care moving forward, not only for Emily, but hundreds of others treated today.


Em signed consent and will report for surgery on Monday, May 14 at 5:30 am.  The plans will roll along and prep her around 7:15 am and she will have about 3 hours in the "resectioning" phase which will remove the distal 2/5 of her left femur and knee joint.  Basically, he temporarily displaces her patella (knee cap) and removes the joint, damaged end of her femur and inserts a rod in her center of femur not damaged with bone cement.  He will resurface her patella so there is a nice protective layer behind her knee cap and then make nice stitches and "put her back together" for another 2 hours or so.  She will lose some soft tissue, some muscle in her quadriceps and tendon.  Basically, Em/we have decided to be aggressive, leave nothing behind and "go for it".  It is simply not worth it to her, or us, or the surgeon to play any guessing games.  She will have some post op recovery, move to ICU and then to a floor in the hospital.  It is expected that she will be in the Clinic for at least 5 - 7 days .... simply depends on how she feels, how her incision looks, etc.  She will have a barstool scar story for sure.... (another one!)


When we left the Clinic the PET scan was still in progress.  After we returned home, her hematology doc called the house and said it was "negative" meaning nothing "lit up" in her skeletal system or soft tissues.  He proceeded to say that the area from last weeks MRI that is "new" tissue did not show any uptake in light and even her tumor area was low in "uptake".  Breathe.


That is our news, that is the news we hope for, pray for, and thank you for your good energy.  I lost my mojo last week and I did not feel good.  So many of you with messages, hugs, cards and prayers have made such a huge difference.  I can honestly say, anyone who faces this type of challenge without the blessing of our level of support is even more brave than our family.  Once in a while I think of people who stand alone in this or do not have access to care and I cry.  We remain so comforted by how we are lifted up.  Everyday we do feel your support and thank you.