Day 338

      You would think Katie was the first child with Leukemia to get an infectious disease.  Apparently the "positive confirmation" on the Chicken Pox is now not so positive - meaning we/they are not sure what Katie has.  It is a virus of some sort and it may be Chicken Pox, or it may be something else.  I don't have the energy or desire to go into all the details of all that has gone wrong - or mismanaged - regarding Katie's health care since she developed a fever and rash, 2-3 weeks ago.  I will just say that yesterday we got A LOT of apologies for how things have gone.  I was told there will be a change in policy, procedures, and protocol.  They say they are "embarrassed" about how things have gone.  "Everyone is sorry."  However, like I told the doctor yesterday, I appreciate all that, and it is necessary to change policies/procedures, but that does not make things right for my daughter.  My daughter has been put at risk and this has impacted us on multiple levels.  We are fortunate Katie hasn't had anything more serious develop - but again, that is just a blessing - it not because of what the doctors have done to manage her care. 
     Katie should have been seen by an Infectious Disease Doctor on day one (or any day there after), not two to three weeks into this.  (We didn't even know there was such a thing as an Infectious Doctor that could see Katie - but they did!)  The doctor at the clinic performed the wrong test, and now it may be too late to ever know what Katie has.  Katie was prescribed the wrong medication, because the doctors at the clinic were not "informed" (and they were not informed because they did not bring in the Infectious Disease Doctor).  Katie was needlessly hospitalized, because they were not more proactive.  And on and on.... 
     They have done so many things wrong, yet we are left to "pay" for their mistakes - paying for the hospital stay - paying for (and Katie taking) the wrong medication for a week (and even through an IV at the hospital).  More importantly, we are "paying" for it, by them putting Katie at risk!  Katie will be off of her chemo for a minimum of two weeks before this is all said and done (and we hope and pray it will not be longer)!  If the doctors had done what they should have done, Katie would not have needed to be off of her treatments for so long.  And I was told it is "imperative" we get her back on treatments as soon as possible.  (When Katie is on chemo/steroids, we pray that she will be protected from the negative effects.  Now that Katie is not able to get her treatments, we are praying she will be protected from relapsing).  They have put my daughter at risk by their mismanagement!  It is frightening that Katie's Leukemia treatments are on hold - I never thought I would want chemo or steroids so badly!  The other way they have put Katie at risk is that she still has something going on with her - no one is sure yet what it is.  Katie has some type of virus.  This could cause her immune system and levels to plummet and that could result in her bone marrow being suppressed. 
     So, we are no where near being in the clear here.  Katie is doing fine, she is now on the right preventative medication, but we are monitoring her and waiting to see what happens.  If her spots go away, she will resume treatments on Tuesday.  If her spots don't go away - then we will have to come up with an alternative plan - which no one knows what that would be yet.  Our doctor is still out of the country - so we will be going to see the head of the Oncology department on Tuesday.  We are told to expect many more apologies...and that is all fine and good, but that still can't fix what has happened, and that my daughter was needlessly put at risk... It will however, hopefully, help others in the future so they will not have to go through what we have gone through.  Like I said in the beginning - the way this went, you would think Katie was the first child to go through something like this.  It is hard to understand and comprehend! 
     I am glad Katie has done as well as she has through all of this.  Hopefully we are on the upswing of things, but it could easily still go the other way.  Whatever it is, I am told Katie is contagious, so we are stuck at home.  I don't know how many readers we have left, but for any out there, we could sure use some extra prayers for Katie at this time!

     President Monson, on the subject of patience, has said: “Life is full of difficulties, some minor and others of a more serious nature. There seems to be an unending supply of challenges for one and all. Our problem is that we often expect instantaneous solutions to such challenges, forgetting that frequently the heavenly virtue of patience is required.”

“Patience, a Heavenly Virtue,” Ensign, Sept. 2002, 2