Day 339

      Yesterday was a sobering day for us, as the full realization of what is happening (and could happen) sunk in.  It was a day that left my husband and I in tears.  Nothing new has developed with Katie - She is doing fine.  It's just the full impact of this finally hit us.  As I said, the Infectious Disease Doctor isn't sure, but he doesn't think this is the Chicken Pox, and never has been.  (Even though we were told it had been confirmed by an Infectious Disease Doctor, and we were told it couldn't possibly be anything else).  Now we are being told it may be a virus that causes a lot of different type of diseases ranging for Hand, Foot & Mouth Disease to Meningitis.  His best guess is this is Hand, Foot & Mouth Disease.  (Hand, Foot & Mouth: rash on bottom of feet, palms of hands and around mouth.  Sore throat, nausea, fever).  Katie never had a rash on the palms of her hands, feet, or around her mouth, so you wouldn't think it was that.  However, as he said, Katie is not your typical child because she has Leukemia and has a compromised immune system, so Katie will not have the typical reaction (to anything) - Hence Katie's rash/sores/blisters all over her body.  The ID doctor thinks what Katie has is linked to this virus because on 9/22 Conner got a fever and on 9/23 he had white sores in the back of his throat (Conner was treated for strep, even though he had tested negative for strep).  On 9/25 Katie woke up with a fever and a sore throat.  I took her to the clinic and she also tested negative for strep, but she was treated for strep as well.  Conner never got a rash, but not every kid does, with Hand, Foot & Mouth.  Katie got one sore in her mouth, in the front that looked like a cancer sore.  Because of all this, the ID doctor's conclusion is that it is most likely not Chicken Pox, but possibly the virus that causes Hand, Foot & Mouth (or a lot of other diseases).   
     We don't know anything for sure, because the proper tests weren't run at the proper time.  More tests are being ran now, but they may not be conclusive.  One test will take 2 weeks to get results back.  So the doctors are just shooting in the dark.  We are currently treating Katie with an anti-viral (the right one this time!) just in case it is Chicken Pox.  If it is the other???  I don't really have an answer for that - as far as I know there isn't a treatment for that - just a wait and see.  Currently Katie has these bumps all over her that are in various stages from new to healing.  They aren't the big red, angry sores, like before.  They are smaller and they have a whiteness to them.  Katie's hands and feet are also peeling (a lot). 
     The sobering part for us, is that Katie has not gotten over this.  Whether this is Chicken Pox or Hand,Foot, Mouth, a normal child would have been well by now.  Is it even either of those?  Or something else?  With a virus, serious complications can arise, at any time.  Complications like Meningitis!  Not to mention that Katie has been off her treatments for so long - and if this "virus" doesn't resolve she will be off her treatments even longer.  Either way, we have to worry about her bone marrow being suppressed.  It is all very frightening!  We feel so helpless...and frustrated!
     I know I "threw a fit" about not going on our trip, but at that time we believed Katie had Chicken Pox, and we believed she was at the end of it.  We were frustrated with the doctors.  This trip was kind of a mile marker for us.  Katie's port is out, it had been almost one year since this had started.  It has been hard for all of us, and this trip was meant to be a "relief" for all of us.  I was so excited to see Conner and Katie's (and Nathan's) excitement at the beach and at Disneyland....It was "a bitter disappointment."  At the time, we sincerely believed she was done and healing from the Chicken Pox.  We thought the doctor was reacting after the fact, because they did not react "to" the fact in the beginning.  --Anyway, none of that matters now.  We are glad we didn't go.  If we had gone, we would have always wondered if she got the new bumps because we pushed her too fast, too soon.  The trip is inconsequential!  Katie is all that matters!  Our sweet little Katie, who out of the blue, told me a few weeks ago, "You don't want me to go to Heaven yet, do you mommy?"  I replied, "No, Katie, I do not want you to go to Heaven yet."  Katie: "Because you would miss me too much, wouldn't you?"  Me: "Yes, Katie, I would miss you too much."  Katie: "But we are all going to go to Heaven someday, aren't we mommy?"  Me: "Yes, Katie, we are all going to go to Heaven some day."  Katie: "Then Jesus will be happy to see me and He will hug me."  Me: "Yes, Katie, He will."  Then she hugged me and went back to playing.  I was left wondering where in the world that came from!
     We are not panicked.  Katie is doing fine.  We think everything will be fine.  Yet...the fear is there, and it is real.  We know our precious, sweet girl is in the hands of God.  We trust in Him and in His will for her.  We are glad we have a knowledge of a loving Heavenly Father.  
     “Faith is not a theological platitude. It is a fact of life. Faith can become the very wellspring of purposeful living. There is no more compelling motivation to worthwhile endeavor than the knowledge that we are children of God, the Creator of the universe, our all-wise Heavenly Father! God expects us to do something with our lives, and he will give us help when help is sought.” Gordon B. Hinckley, "With All Thy Getting Get Understanding," Ensign, Aug. 1988, 2