A Day of Rest

 Austin woke up Sunday morning in a great mood.  We played Crazy 8's while we waited for his breakfast to come.  We walked down to the playroom and Austin beat us at a few video games.  He even felt well enough to go outside for some lunch.  We found a quiet table in the shade and had a very peaceful time.  He was able to enjoy a few minutes without his mask on.  He asked about his "sick blood"  and we tried to explain in terms he could understand.  I said Leukemia is a like a big bully that is taking over the blood and telling everyone what to do.  It forces the warriors (the white blood cells) to be something they are not supposed to be so they can't do their real job of protecting the body from the invasion of germs.  So without the warriors, you get sick.  Chemotherapy is going to kill the bullies and then let the body grow more warriors.  Very simplistic but good imagery for an 8 year old.  

Playing Video Games With Dad

I wish I could tell you that the day ended as well as it started.  We came back to Austin's room to rest after playing in the playroom with his cousin, Lydia.  Austin took a really good nap but once again, just as yesterday, he woke up with a raging fever.  This time it was 103.8.  Just as yesterday blood cultures were drawn and antibiotics were given.  The blood culture from yesterday was negative for any bacteria so we don't have an explanation for the fevers.  They treat them as if there is an infection present even though much of the time the fever is caused by his low neutrophil count.  Austin continues to have pain in his jaw and ears, a result of the Leukemia causing sore joints.  He was given tylenol but it didn't help this time.  Austin also said he was nauseous so he was given Zofran through his IV.  Ultimately he continued to be in pain so a one time dose of Morphine was given IV and this helped the most.  It is so frustrating to have this keep happening and it makes me very nervous to go home.  Are we going to be rushing to the ER all the time with a fever?  How do I manage this pain that comes and goes?  Frankly, I am scared to death.  I feel like my child is a ticking bomb that could explode at any moment and I won't know how to cope.  All these thoughts and I have a basic medical knowledge.  My heart goes out to those that are completely starting from scratch when it comes to learning all this stuff.  It is already overwhelming!

Austin with his nurse, Jared.   Getting some pain medication

As I type this, my sweet boy has finally succumbed to sleep.  He seems comfortable now and I am grateful for that.  I can't help but think about the next month, the next 3 years with dread.  There are moments that I don't think I can do it, that I can't manage all this.  When I think of the traveling back and forth from St George to Primary's, the missed school and work, the bills getting bigger and bigger, trying to be a mom to 2 other wonderful kids that deserve everything a mom can give them too, frequent ER and doctors visits, etc, etc, etc,  and above all else-- seeing my child suffer--how do I do it all?  I don't confess these thoughts with the desire to complain or to solicit help from anyone, I just am sitting here having a bit of a pity party, wishing that when I wake up in the morning I will have never heard the word cancer, at least in connection to my child.  Somehow I know I will find the strength to move forward, to take it one day at a time.  To accept help when it is offered and give it when it is needed.  As so many other mom's have done with their own sick kids, I will simply, survive.  Deep down I know that I have been given this trial to learn something-- to be a better mom, to be a better friend or neighbor or nurse.  I don't pretend to understand why things happen the way they do or why good, sweet, innocent children have to suffer; but I think-- I hope that when all this is said and done, when my boy is cured of this awful disease, we will look back and see how far we have come and understand that somehow, it was for our good.  

As tough as Superman!