Day 331 - Part 2

       Well, there is one thing worse than going to Disneyland on steroids..... Not going to Disneyland at all!...  We have had to cancel our trip to California next week.  After all my planning, and scheduling, and anticipation, we are not going - it was all for nothing - except disappointment.  I even had all of our bags packed for our trip (I did all the laundry and packing yesterday - I like to plan ahead and be ready).  We have been planning this trip since summer - we had to cancel our summer vacation because Katie wasn't able to get her port out - so we planned this trip for now.  It was perfect timing - Nathan was going to be out of school and it is his 16th birthday (he loves the beach), Scott already had 4 days off of work this next week, Katie was going to be in between treatments and not on steroids, it was still warm enough in California to go to the beach, I had everything planned down to the last detail, it was going to be great!....  Katie is a few months into Maintenance... everything was supposed to be pretty predictable.  I have saved and put money aside for this trip, which is not easy to do, because of all our medical bills.  We all needed something to look forward to - and for months this has been the "prize" in front of us.  I have talked it up to the kids.  They were so excited about it.  I was so excited about it.  I spent days trying to get the best price, best days, best hotels and making reservations. 
     This whole week, I was told by various people at the clinic, it would be fine for us to go on our trip, and now today we are told we can not go.  It is a bitter disappointment!  Scott and I even considered ignoring the doctor and just going anyway.  But this is our daughter's life - and no trip is worth any risk - it is better to be safe than sorry.  But it is such a let down!  I already had all of our bags packed for goodness sake!!!  We were on the count down.  FRUSTRATING!  DISAPPOINTING!  MADDENING!  Our doctor is still out of town - I wonder if things would have gone differently if she were here - I think they would have!  Scott and I did not agree with everything the doctor said and did today.  It is so ludicrous.  We get there today and they treat us like we have the black plague - fine, I understand that - Chicken Pox is very dangerous to kids with low immune systems.  BUT where was the care and concern for my daughter this whole first week of her having Chicken Pox!? 
     I went into it all with the doctor today and all she could say was, "Yes, I agree... I agree... I agree... Your daughter's care was not managed well." The doctor went on to say we are "fortunate Katie is doing so well, and that nothing more serious resulted."  I agreed with her, but told her that was exactly my point - It is just fortunate, a blessing, that nothing more serious resulted.  I explained to her that now that I have researched Leukemia/Chicken Pox, I realize just how serious this could have been for Katie.  The doctors I have been talking with this past week, should have known the dangers, and they should have been more proactive with Katie's care - and yet they did not provide the care for her they should have to ensure Katie's health and safety through this.  Once again, the only thing the doctor said was, "I can not speak for the other doctors - but I agree, Katie's care has not been managed well".  AGGRAVATING!
     Long story short, the doctor said Katie is still contagious.  Katie did not get her chemo treatment today and she will not start on her steroids.  In fact, we are to stop all of Katie's chemo medication for the next week (a little after the fact I think -  Katie has had Chicken Pox for well over a week now - and NOW they tell us to stop the chemo!?)  I do agree it is a good idea to hold off on the chemo, but shouldn't they have stopped it a week ago when Katie was really sick?  Anyway, it is what it is... So, instead of Katie playing at the beach next Friday (in her cute Minnie Mouse ears hat), she will be here, getting her chemo treatments.  What a bummer!!!  I am worn down and wiped out - we all are. 
     However, in an effort to look for something to be "glad" about, we are so very very grateful for how blessed we have been through this whole thing.  Katie only got a mild case of Chicken Pox and that was a great blessing!  None of her sores got infected and that was another great blessing!  And nothing went seriously wrong, that could have gone wrong.  Katie is alive, she is recovering well, she wasn't hospitalized, and she is fine.  I am glad and grateful for all those blessings.