Day 331

     I feel like Katie getting Chicken Pox has been a reminder that I need to be more proactive, I have to be in charge of my daughter's health care and not just leave it up to the doctors.  I need to research things on my own and be very vigilant about her health care. 
     After doing some research, I have come to realize how blessed we are that Katie only had a mild case of Chicken Pox.  If she had been on steroids in the past couple of weeks (verses being off steroids for 3 weeks) she most likely would have had a severe case.  Chicken Pox and steroids are not a good mix - and can lead to severe complications and even possibly death!  I am angry that the on-call doctor I spoke to on Saturday morning did not even ask me about Katie's steroids, that she did not have me bring Katie to the hospital, and that more was not done to ensure my daughter was okay.  The doctor that day - and even the doctors on Monday (when I called the clinic acted like Katie was just another kid with Chicken Pox, BUT that is not the case.  Katie has Leukemia and her immune system is not like other kids and Chicken Pox could have been life threatening for her. 
     Like I said, it wasn't until Tuesday that the doctors started reacting to this (they were short staffed and there wasn't a Leukemia doctor working until Tuesday).  Even then, we feel like they were more concerned about not infecting the other children, than they were about Katie, because they did not want us to bring her in.  In a way I can understand that, but in a way I also resent that.  I am angry about how things were handled by them.  I am sad and frustrated Katie got the Chicken Pox - period.  I am sad and frustrated Katie has to take (more) medication twice a day, for a long period of time, because she got Chicken Pox.  I am scared, sad, and frustrated that she could easily get Chicken Pox again or Shingles.  It is just one more fear and worry. 
     We think we found the origin of the Chicken Pox.  I am taking turns with other mom's teaching Joy School.  Katie is one of 7 children.  I was encouraged by our doctor to involve her in a preschool program.  Two weeks ago, one of the children was immunized for Chicken Pox, and came to Joy School the next day.  This is not anyone's fault - the mother even asked her Pediatrician if it was okay for her child to be around Katie and she was told it was okay.  Our doctors at PCH would have told us the same thing.  However, it takes two weeks for Chicken Pox to "appear" - and the timing is too exact for it to be a coincidence or anything else.  Plus no one else we know had Chicken Pox.  It is rare for a child to contract Chicken Pox from another child getting immunized.  The theory on this has swung from one pendulum to the other on this topic - the doctors used to not let siblings of patients get immunized for fear of exposing the child with Leukemia - now they say it is okay to be around immunized kids.  Unfortunately, Katie is proof that a child with a low immune system can get Chicken Pox from a child who received the vaccination.  (Again, we do not blame anyone for this - there is no way any of us could have known to do anything any differently).
      I am still worried about Katie.  She threw up last night and was very shaky this morning.  I am scared, sad, and frustrated!!!  Katie goes to the clinic today for a chemo treatment and antibiotics - and to start her 5 days of steroids.  I believe the risk of steroids mixed with the Pox is no longer an issue, as Katie is past the worst of it.  However, I will be sharing my fears, concerns, and frustrations with the doctor.  (Unfortunately, our doctor is still out of the country).  I am going to just say it one more time... I am frustrated!  I wish things were different.  I wish Katie didn't have Leukemia...didn't get Chicken Pox..... 
     But back to reality, back to dealing with it, and back to looking for the positive.  I know I am reacting to what could have happened and not what actually happened (but for Scott and I, this is a terrible reminder of how vulnerable our daughter is, and of all the things that could happen, and how many things can be life threatening for her other than just the Leukemia).  However, we do recognize the great blessing we were given this past week, and that things were not worse than they were.  I am glad that if Katie were to get Chicken Pox, that she got them 3 weeks after her last steroid treatment and not at any other time.  I am glad that she only had a mild case.  I am glad she is doing better.  I am glad she is responding to her chemo treatments.  I am glad her chemo treatments and other medications are available.  I am glad she is alive.  I am glad she is who she is.  I am glad to be her mom.