Thank you from Michalla and please send memories or thoughts of Michalla

The docs have called another meeting with Rich and I for 4:30 today to discuss the recent (bad) turn of events and where to proceed from here.  Things are not looking good though.  Michalla and I have been talking about dying this morning.  Her exact words where "I just want to die already. Why do I have to go through all this?"  Meaning why does she have to go through all this pain if she is just going to die anyway.  I didn't know what to tell her.  I have the exact same questions!! Why?

She is up 4 liters of fluid that her body can't get rid of.  They are surprised she is even able to still breathe.  One option is surgery to put a tube in place to have dialysis but they think it is very unlikely she will survive surgery.  But if they don't try it will only be a few days until she will die anyway from the fluids.

Her lungs are also bleeding from the fungus.  She is in so much pain.  Everything hurts.  It hurts her to have anyone even touch her, which is hard because all I want to do is hug her.

I know everyone has already spent so much energy and time on Michalla but if you would take the time to write down any memories you have of Michalla and email them to me I would very much appreciate it.  I would like to put together a book of memories or thoughts people have of Michalla.

I also want to be able to read them to her over the next couple of days.  We have been talking about some memories I have but it would be fun to read other memories.  Would you also please send any pictures you have of michalla to me.  My email is teribeardall@msn.com.  PLEASE.

Michalla has been fighting sleep all morning but I won't let her fall asleep.  I keep telling her to stay awake because I want to spend every minute I can looking in her eyes and talking to her.

I asked her if there was anything she wanted to say to everyone on the blog and she said, "Mom, I'm just so tired."  I gave her permission to go asleep.  I told her I wouldn't keep her awake anymore. She opened up her eyes a few minutes later and said, "Just say Thank you.  What else is there to say, except Thank you."

So Thank you from Michalla and Thank you from her family.  As things get crazier around her and assuredly harder I don't know how much emotional energy I will have to blog so if I can't do it please accept our gratitude and thanks for being on this journey with us.

Can the word of the day please be HOPE

The steroids have helped Michalla's bowels and her stool output has stopped.  This is nice for her.  Her kidneys still aren't responding and are worse again today. Her liver is a little better though.  She is also coughing a lot and has coughed up some blood.  Her urine is straight blood (the darkest I have seen it) with lots of clots. This is from the bk virus she has (whatever that is).  I will post as the day goes on if anything changes.  Right now she is still asleep after another restless night.

Picture from the Rally. Lots of people love Michalla

Trying to hear and understand what Michalla is saying.  It is so quiet and gargled you have to get your ear really close to her mouth. 

Singing "A child's prayer" to Michalla

Clint and I haven't been crying or anything :)

Faith and Cambri with Michalla on the 'field trip'. I love how blue and clear Michalla's eyes look. 

Lilly--Can the word of the day today be HOPE? 

Dad, Rich, helping Michalla go on 'field trip'

Field Trip around the corner to a window she could look out.  Can you image being in a room that you couldn't see outside for weeks? The view wasn't much but at least it was a look outside. 

Smiles

The results from the ultra sound and labs showed Michalla doing a little worse.  That is ok.  She has only had 3 doses of the medicine.  The good thing is her spirits seem to be up today.  She loved loved loved the rally last night.  Rich said she was smiling the whole time and was mouthing along to the song the kids sang.  I haven't seen her smile in weeks so that is awesome.  Despite a hard night (her cathyter came out twice and they had to put it back in (ouch!), she has been pretty alert today.  She was so excited to see Clint.  When he walked in the room she started crying.  He really is amazing to her.  He is such an outstanding young man.

Thanks to everyone that fasted and prayed today in our behalf.  Thank you to all that went to the temple today too.  I felt very loved and have passed on that love to Michalla.

Before I went to the temple today, I put my dress into the dryer to get out the wrinkles.  When I pulled it out, there were tissues and certs and all sorts of papers all over the dryer from things I had left in my pockets.  So I was surprised when I put my hand into my pocket in the dressing room to feel a piece of paper. What I  pulled out was Michalla's name tag from when she went through the temple for herself last Nov before she was to leave on her mission.  It was so neat.  I carried it in my pocket through the whole session.  It was like she went to the temple with me today in spirit.  A little tender mercy from the Lord.

I am hoping for some good news tomorrow when we see Labs from early tomorrow morning.

Fast tomorrow

I am fasting tomorrow for Michalla.  I know several family members and ward members are as well.  I ask that anyone that is willing and able to fast, please join us in uniting our faith that Michalla will get better.  The doctors are trying one last thing to help her with the organs that are shutting down and other issues she is having.  It is a long shot but we aren't done fighting yet.

Michalla expressed she is tired for fighting but she isn't ready to die yet. The doctors say within the next few days will be able to tell if the drugs are helping.  These drugs are not without risk.  That is why we had the meeting with the doctors.  But we made a decision that we had to try because without the treatment she would certainly not make it.

As we were explaining to Michalla that she was old enough that she had to decide if she wanted to be on life support and who she wanted to make the decisions for her if she gets to the point she can't decide anymore, she got all sad.  The only thing she said (it is hard for her to talk) was that she was sorry and felt bad she was taking up so much time and energy of everyone's life.

That is so Michalla.  We are talking about her dying and she is apologizing for being a burden to everyone.  She is the most thoughtful person I know.  Just like offering her blanket to me in the ultra sound room, while I was laying by her this morning she wanted to move her pillow because she was so uncomfortable but was worried I wouldn't be comfortable anymore.  Here is a girl that is in more pain than she has ever been in and she is worried my head won't be comfortable.  I just love that about her.  Another sweet thing about Michalla was when they came to bring me the sacrament yesterday, she thought she would be able to take it.  When they didn't pass it to her, tears started rolling down her cheeks because she was so disappointed that she wouldn't be able to take it.  What an awesome example to me!  I hope to be able to feel that longing for the sacrament that she has.

Thank you all for the kind thoughts and prayers that are coming our way.  I am so grateful in times like this that I have a sure testimony in the gospel.  I can't imagine going through this without the knowledge that there is life after we leave this earth.  Without an eternal perspective, I don't think I would be able to go on.  I am so thankful that Michalla is sealed to me.  Yesterday Rich told Michalla "This body isn't you."  That is so true. Michalla is much more than this mortal body she is trapped in.

I love you all.  Thanks for sustaining me when I didn't think I had anything left in me. Your kind words of encouragement are what get me through the day.

    Thanks Heather. When I show Michalla she smiled. 

Keeps getting harder

Such a long day yesterday as the news settled in.  We are having a meeting today at 11 with all the big chiefs of all the departments to decide what to do and what plan to take.  Every plan isn't without risk. (Big risk).

Lows of the last 24 hrs:

 Michalla saying she can't do this anymore.
 Michalla asking the doctor if she was going to die and him answering he doesn't know.
Michalla not having controls of her bowels, and her watching them clean up her bedding with tears running down her cheeks saying she is so embarrassed.
Seeing Michalla in so much pain.
Having the ICU doctor tell me Michalla's organs are shutting down is the path toward dying.
Sitting in on rounds and having them say they have one last ditch effort to try and save her life but it is extremely risky.
Having docs tell me we need to have a talk with Michalla to see what her wishes are about being kept alive on life support.


Highs of the last 24 hrs:

Michalla asking me to lay by her and having them painfully move her over to make room for me on her bed.
Laying by Michalla for the last 4 hours holding her hand.
Michalla telling me I have been a good mom.
Logan and Megan showing so much love toward their sister and such emotion.
Logan giving Michalla a hug good bye and Michalla wanting to adjust her arms so she could actually put her arms around him too and not just have him hug her.
Support and love from family and friends.

Im sorry this is short but I don't have the emotional energy to say much more or go into many more details.  The only thing that can save Michalla's life now is a miracle.

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.

Stuck in a rut.

The docs are worried because Michalla has had several days of no improvement and even doing worse.  She is not able to eat any food anymore.  She is even not getting anything in her feeding tube.  She is also more tired and not moving as much. She isn't responding to the medicine they are giving her for C Diff or the medicine for the fungus.  They are running a bunch more tests (x-rays, ultra sounds, CT scans, cultures etc.) to see if there is something else they aren't catching and treating.

They are surprised she is making such slow progress.  We will see if the tests tell us anything.  My original goal was to have Michalla home by her birthday on July 1st.  What a great birthday gift to her that would be.  Now I am just hoping she can be out of the ICU by her birthday.

Please continue the prayers in her behalf.  Thanks. Love you all.