already tired of feeling sick

Em is struggling, but still winning the battle vs. nausea.  The therapy she had this first time through does pack a punch, but sweet Em is punching back.  A little anger goes a long way.


Last night she had some tightness in her chest, but EKG and all vital signs (heart rate, Blood pressure, temperature) were all good.  Doctors do think that it is possible to have spasm in esophagus may be to blame.    As acids move around and medicine does it's work, there is a lot to balance in her.  That has subsided, but the nausea has not.  Leg pain is still at much lower levels than before.  Sista Kenzie and Mom stayed the night.


Em's goal today is to drink 2 liters of her own liquid and hopefully eat something.  The team would like to transition her off all IV fluid and be sure she can manage this at home.  They are also are very hopeful that at day 3 or so, the nausea subsides.  The docs applaud how well she has responded, but again, all the cheers at the moment do not take away the nausea.  Hopefully the Zofran will.


Moving forward, Em will have a number of GI maintenance things to take, i.e. Pepcid, Glutemine, to name a few, which help keep her acids in place and bacteria manageable.  She will juggle pain meds as needed for her leg, but again, that appears to be in a much better place.... amen.


I don't recall if we clarified the "MAP" for her treatment, but essentially, she is looking at 10 weeks for therapy which is already underway with her two doses this week.  Next week Wednesday, starts "week 2" and in week 2 and 3 she does not have planned inpatient treatment.  She will need to check in with the CCF Main Campus Pediatric Care Unit for routine visits 2-3 times per week.  They will monitor her blood count, pain management and maintenance.  During Week 4 & 5 she will have a different course of inpatient treatment.  Once Week 6 comes around, she will repeat this cycle.  So essentially, her 10 weeks is equal to (2) five week segments that match.


At that point, we will be able to have Em's leg evaluated and the team will determine what correction best serves her.  We know going in that this tumor appeared in the distal third of her left femur.  So, the experts will provide their best solution then.  She could be the modern day "Lindsay Wagner" i.e. Bionic Woman.  (So sad that many who read this don't even know who that is.... MOMMA! is that old).  After the team is satisfied with their correction, she will go back on a protocol for more therapy and that may range for an additional 15-20 weeks.  It is hard to imagine, but the MAP is set and our journey is on.  We have to keep the end goal in mind and as MANY folks have said, THIS IS A MARATHON, not a sprint.


So many folks have done much for her and our family already.  It is all appreciated.  As we hopefully transition to home tomorrow, she will be relaxing in a clean and comfortable environment at home and all visitors will need to be healthy and a part of our new normal of anti-bacterial hand wipes, occasional face masks, repeated handwashing and limited hugging to be sure Em stays as germ free as possible.  We all expect her to focus on fighting this illness in her leg and not having to take on anything else.   Lily and Daisy are already planning to rock the full body shave to be prepared for Emmy.  Thanks for the emails, posts and messages.  They are helping us a great deal and more importantly, they make Emmy smile.


This is all temporary, we know it, and we appreciate not having to do this alone.  So, with "already tired of feeling sick" today, we know this sets us up for feeling good soon.  This won't last for long.  


Thanks for staying close.....


MOMMA!  Kenz and Daddy-O  (Joe is rocking practice and preparation for CYO City Championship run with the support of many friends... his first game is tomorrow... Go Bull Dogs!)