We need the Sun to shine today....More very bad news..Lots of major issues.

When I got to the hospital yesterday morning the first thing Michalla told me was that she has never hurt this much before.  I tried to rub some lotion on her poor hands and face and legs and it hurt sooo much for me to even touch her. Her skin is so sensitive.  Moving her to the bathroom is pure torture. She has bad pealing skin and rashes.

She is back on the bi pap instead of the c pap because her breathing is worse.  She now as fluid on her left lung as well as her right lung.  They are not putting a chest tube in for now because they think the risk outweighs the reward so they are just watching it.

With all those tests they took they see that the fungus is more mature in her lungs and is evolving.  It is still contained to her lungs (which it wouldn't be without the medicine) but it isn't getting any better.  In fact it is getting worse.

The night was hard with several diarrhea bouts and throwing up and a chest xray at 4 AM.  I think we got about 4 hours sleep total.  The xray hurt her so bad because they had to touch and move her.

The really bad thing is that graft vs. host has started.  The skin irritations of graft vs host are annoying but the bad thing is that it is in her gut. Her stomach is hurting soooo bad and she is having diarrhea so bad.  Straight liquid running through with no thought of making it to the toilet.  The stomach as basically shut down so even water stimulates the lining and causes diarrhea.  They had been giving her the meds that aren't avail i.v., crushed up and in her feeding tube.  They are discontinuing even her meds because this graft v host is so serious.  She can't have ANYTHING in her stomach.

Michalla doesn't know it yet but this may be her worst day...ever....since they just took away her ability to have water.  She is not allowed to have water any more! :(.  I don't want to tell her......
(.As I am typing this Michalla just asked for water and the nurse told her she couldn't have any.  Tears are now rolling down her cheeks.)  To feel like hell and not to even have the one thing that gives you just a little relief just doesn't seem fair.   I HATE CANCER!

In rounds today the bone marrow doctor told everyone just how painful this graft vs. host in the stomach is. They upped her pain meds.  She has a pain pump she can push every 10 min and it is locked out in between.  She was successful in pushing it 18 times through the night but unsuccessful in pushing it 40 times.  That means she was in so much pain she was trying to push it all through the night.

Her kidneys are worse again today.  This is a big concern also.  The kidney specialist came yesterday and is coming again today because her fluid retention is even worse.  They are giving her a lot of meds to try and get the fluid off but nothing is working.  This is a major issue.

Her jaundice is  bad.  Her eyes are just yellow.  They say this is caused from the anti-fungal medicine to treat the aspergillus.  The medicine causes the liver to not work properly. It seems like one medicine helps one thing but hurts another thing.

Ok, here is where we need another miracle.  I haven't seen the doctors so somber in discussing what to do. They even called the big guns on the phone and discussed because they have no answer.  They sat around and discussed for 15 minutes and didn't even make a decision. It seems like one of those damned if you do, damned if you don't.

Michalla needs steroids to treat and get rid of the graft vs. host in the stomach.  But the steroids will help the fungus grow in her lungs, which is already barely being kept at bay.  So the discussion was to give her steroids and help her stomach and make the fungus worse or not give her steroids and leave the graft vs. host untreated.  It is a major deal.  Both of these are big life-threatening issues with no clear answer.

Michalla is in so much pain and right now the future doesn't look very bright.  I know that the Lord has a plan for Michalla.  I don't know what it is but I know if he wants her to get better she can, even though it seems impossible right now and the doctors have no idea how to make it happen at this point.

Her journey has been a series of miracles so far.  I need all of your help...AGAIN..(I'm so sorry I am always begging for help).  We are in need of another miracle to heal Michalla. I have found myself once again, begging with the Lord to direct the doctors to make the right decision and to save my daughters life.

As a mother, I just looked at her and cried and cried yesterday.  Last night she was in so much pain that she didn't want me to leave her bedside.  Even though it was 12:30 in the morning I just sat on her bed and held her hand until she fell asleep and I could sneak away to the couch bed.  I sang her all the primary songs I used to sing to her when she was little.  I don't have the best voice but it seemed to calm her down a little so I will pretend like she enjoyed it. :)  It is so hard to see your child in so much pain and not be able to do anything.  I have such sympathy for anyone that has had to watch a loved one die from a disease.  It is horrible.  As I was driving yesterday I was just sobbing because at that moment in time I didn't know how we could go on even one more day.  I am still crying right now but I know the only way we can go on is with the help of the Atonement. As I type this I know it is true and I feel some comfort in it, but my lack of faith is showing in the fact that I still feel so hopeless and quiet frankly just so tired.  Some days I just want to give up.  I just don't think I have it in me to go on another day.  At the same time,  I feel so guilty because Michalla isn't giving up. I'm not the one battling this terrible disease yet I'm the one wanting to give up.

So please, when you pray for Michalla please pray for me as well. Please ask the Lord to strengthen me to be the mother I need to be right now and have the faith I need to accept the path the Lord has laid out for Michalla.  I do not have it in me anymore to be strong--without the Lord's help. Help my shoulders be strengthened  so I can bear this burden a little longer.