Thursday, May 29, 2014

Can May be over already?

Highlights of last night:
1. You know you are in the hospital when the big excitement is you finally have a bowel movement  (I keep digging a bigger hole for myself when Michalla is finally able to read this).

2. She pulled out her feeding tube so they had to put in a new one to be able to give her the oral medicine she needs that isn't avail. IV and she had to have another line added to her arm because the three lines they already have running in her pic line aren't enough to give her all the medicine she needs. (Really?  4 lines running at once?)

3. Reduced her pain medicine.  We will see how she does.  Want her more alert because she has to start doing more physical therapy (gotta love it, huh Jeff?) to be able to stand and walk again on her own.

4. That pic I posted of the sore on her ear  (they are blister like sores) are starting to spread to other areas of her body.  I noticed 6 or 7 ones on her back, neck and head while we were giving her a sponge bath.

5.  Her chest drain coming off her lungs stopped working (they think from a blood clot) so they spent several hours working on getting that to work again.

6.  I sat in on the nightly gathering of docs outside her door.  Down here in the ICU they do it in the morning and at night rather than just once a day like in ICS.  I guess I am a glutten for punishment since I said I wouldn't do it again after listening in a couple days ago.  This time went better though.  I was more prepared and I actually felt like Michalla's advocate for a few things.  I am not a doctor or even a nurse but I feel like I know my daughter pretty well. So even though I probably drove them crazy I felt really good about it.

7.  The outpouring of love and generosity continues.  Out of respect I am not going to say who or what but a generous donation (can you say widow's mite) was given to me to help with Michalla's expenses.  I am shocked and often times stumble to stay the right words to adequately thank everyone that sends me little text messages or puts things on facebook or brings a meal or runs errands or watches kids.  EVERY single act of love has an impact on me, even if I don't have the resources to individually respond back.  I wish I could start listing names but I am afraid I would forget someone and don't want to hurt feelings.  But please please if you have reached out to me or any member of my family, know I am talking to you.  I love you all.

Wednesday, May 28, 2014

Poor Thing

When Michalla is aware enough to see everything I have been posting she is going to kill me. :)

The docs are all concerned about the big things going on with Michalla. I can't do much to help with those things.  They are all inside of the body.  The things as a mom that are hard to see are the constant throwing up of stomach bile and blood. The swollen tight skin. The puffy eyes, skin and lips.  Those lips bleed constantly.  I don't even recognize them.  Her chemo cracked hands (they are shiny from the lotion I try to keep on them. And the sores on her body. :(  All of these things aren't even concerns of the doctor when they are dealing with life saving issues.) 

Michalla has been doing a little worse the last couple of days.  Her chest xrays are looking a little worse etc. but the docs tell me that is normal.  That it will go up and down and not to get discouraged.  Easier said than done!   Michalla hates the breathing mask and tries to take it off all the time.  Even when she is asleep it is hard to keep her hands off it.  It is so loud and uncomfortable for her.  She says it makes her feel like she is suffocating. :(

The good news is that she has graduated from ice chips to licks of a popcycle and water.  You would have through Michalla won the lottery she was so excited when she could finally have something besides ice chips.

I made the mistake the other day of sitting in and listening to the docs as they discussed Michalla outside of her door.  There was the bone marrow team, the ICU docs, the respitory docs, the infectious disease docs, pharmacy, physical therapy, etc.  There were about 15 people there.  Each team went around and talked about what was wrong with Michalla that fell under their umbrella.  After listening to them, I left wondering how she was even alive.  It was so depressing how many things are wrong with her.  I guess ignorance really is bliss.  I like just knowing that she is in good hands and will get better.  Next time I will tell them I will miss the meeting. haha



Monday, May 26, 2014

Another update. More of the same.

A little bit of a rough night.  Any progress we made getting off the cpap was erased.  Her breathing is worse today.  Dr. Pulsiver informed me this morning that Michalla has Pneumonia.  He said this about what she has in her lungs.  "It comes on very very fast but is very very slow to get rid of".  He said it will take months for her lungs to be better. :(

The throwing up is still bad.  It is crazy that she can throw up so often without eating or drinking anything.  She keeps asking for even just a lick of an otter pop or some water.  Right now they are only letting her have ice chips.

Still a lot of fluid coming off her lungs from the chest tube.  Fevers are still hovering around 100 to 101 with Tylenol.

Of course there is always something going on in the room.  From labs to xrays to respiratory therapists to infectious disease docs to bone marrow docs to icu docs.  She is being tested and examined about every 1/2 hour to hour. In between docs, she is throwing up.   Poor girl can 't get any rest.

As I go upstairs to the ICU unit on the 4th floor (we are currently on the 2nd floor) it feels like such paradise compared to the ICU.  I joked with a nurse that ICU was hell and coming up here was like entering the celestial kingdom. 

It is funny how perspective can change how you look at things.  Before we came down here I was counting the days until we could go home.  After 1 month in that little room, it seemed like there could be nothing worse.  Now, I am counting down the days until we can go back upstairs.  That will be heaven :).  We have been in the ICU so long that the nurses feel like family and when you enter the unit it feels like you are going home.  It really makes me appreciate the love and kindness we feel from everyone that takes care of Michalla.

Sunday, May 25, 2014

It's Sunday and the Sun is shining

Update:  It is been confirmed that the fungus is Michalla's lungs is Aspergillus, which is a mold.  The good news (so happy we have had a string of good news) is that it is a common fungus they treat around here and are familiar with treating it. They were concerned since she wasn't responding to the antifungal medicine that it was something more rare and hard to treat.  The other good news is that her ANC is 4600!  Can you believe it?!!!!  Her body is not giving up.  What a fighter! We are still in the ICU and on the cpap.  Nothing much has changed.  Still draining fluid off her lungs and trying to get fevers under control.
The last couple of days have really be humbling as I realize how little I am in charge of my life (or Michalla's for that matter) and how much love and goodness there is in the world.  The outpouring of love and support has been amazing.
On Tues or Wed (this week has been a blur) while we were down having the MRI and other tests and my heart was so sad and my head spinning a note written on a napkin got taped to the room door.  The words, "Michalla mama" were written on the outside of it. I am going to only put initials for the names since I don't know if they would want me sharing.  This is what the note said: Hi my name is B and my son J is also treated here for ALL.  I came across your blog last night and wanted you to know our prayers are with you and your family.  I work at the U Hosp and can bring you any thing if you ever need it.  Please feel free to call or text me! 801-.... Hugs to all of you!
As I read that note tears just started rolling down my cheeks.  The amount of love and kindness in this world amazes and inspires me.  I don't know if I would be as good of a person as all of you are.  I am so wrapped up in my own world and my problems that sometimes I fail to look around me. Here is a woman who's own son is battling cancer and she reaching out to me and looking outside her own problems (which I am sure are huge) 
Then Thursday I got a private facebook message that read: 
Hi Teri, my 8 yr old son, G, was diagnosed with ALL one day after sweet Lilly. I have been following your blog the last few days on your beautiful Michalla and wanted to send you our prayers, positive thoughts, tears, and love. The first time I ever saw a post of Michalla and Lilly I wondered why we couldn't have met Michalla first. But then I realized my sweet son wouldn't have appreciated matching leggings as much as Lilly and thought it was meant to be. Without even meeting your daughter, I can see so much life and hope and strength in her eyes, I feel like I have so much more to learn from her. We aren't the most religious people, but this experience has shown us God's hand in so many different ways, I am finally realizing there is so much more to this life than my shallow mind had ever thought before. I am so grateful to come across such beautiful families as yours in this life, to learn and grow from. I find myself going from never praying to saying more prayers in my lifetime for my son and for people that I have never even met. My heart is with you and Michalla at this time and I truly hope and pray with all my heart that tomorrow will be a better day. Much love to you and your family, C
(Reminder Lilly is the darling 6 year old that has ALL that Michalla has befriended.  They love and inspire each other. I believe it was a tender mercy of the Lord that our families met each other.)
All I can say is WOW!  I could go on and on (and I know I usually do :) ) about the angles that are here on this earth serving and reaching out to my family.  I haven't had the time to reach out to each of you personally but everytime I read a comment on facebook, or get a text, (even just a short 'I'm thinking of you') it makes my heart swell and my face smile. 
Once again I couldn't do this alone.  It really does take a village....  Thanks for reaching out to me in my time of need.  It's ironic that when times are the roughest and scariest that I couldn't feel more blessed.   I love you all.

Saturday, May 24, 2014

Still fighting

Michalla had a rough night. There was not enough oxygen in her blood so at 3 am she is throwing up and chest X-rays are being performed.  Her breathing is under control now on the c pap. She is having some kidney issues but the biggest concern is still the fungus in her lungs and getting her so she can eventually breathe on her own.  They also found some new viruses. They think it is too big of a risk to treat them right now in her condition but they are having a meeting with the infectious disease team at the U to decide what to do. Michallas counts continue to rise but the docs say it is too soon to tell if they will be able to cure the fungus. Keeping fingers crossed. Will be in ICU at least until next week, maybe longer.

Friday, May 23, 2014

Off the Intubator!

Michalla is off the Intubator! She is still in ICU but is now only breathing on an oxygen machine rather than having the tube down her throat into her trachea.  This is great news. She still has the drainage tubes coming off her lungs.  She is in a lot of pain but the fact that they were able to remove the intubator already is great!  Many unknowns but another big day.

Michalla will kill me for posting this (This is Michalla's urine)  Poor girl.  It burns her so bad to go pee.

This is the sweetest nurse in the world.  Carla, who is on leave right now and isn't even working, came to see Michalla and hold her hand even though she knew Michalla wouldn't even know she was there.  I love this woman.  The nurses at Primary Children's become your friends and family. 

Morning update

Rich spent the night with Michalla.  When I asked him how she was doing at 8 AM this morning this is the text back. "Shes stable. Breathing on her own about every other breath. Shes awake and in pain. Shes looking at me like help me and there's nothing I can do.  And she can't talk.  Its horrible."

I forgot to mention yesterday that while Michalla was feeling so sick and having to do an ultra sound after her MRI on her liver and abdominal area, the nurse brought her in a heated blanket because she was so cold (and she shakes from a side effect of the medicine).  They laid it on her.  She turned to me and said in her voice she can barely get out "Here Mom, Do you want it?  You are always cold." It was the sweetest thing ever. The ultra sound tech said that Michalla was her favorite patient of the day and couldn't believe how considerate she was and thoughtful in the midst of her own problems and pain.

Update:  Just got off the phone with Rich.  Michalla got blood last night and is getting platlets right now.  She was in so much pain they have sedated her again and she is back to sleep.  She is still running a fever and has other issues but she is stable.  I am glad she is back to sleep for now.  She deserves some rest.

Thursday, May 22, 2014

Out of surgery update

During the surgery Michalla had a intubator placed down her mouth into her lungs and also a drain put into her lungs to remove fluid.  The fluid is bloody. I guess I didn't understand when she went under that they weren't waking her up.  They are keeping her sedated until it is safe to remove the intubator.  Don't know how long that will be.  I am glad I got her to focus on my eyes and really zone into me as I said and made it clear " I love you Michalla".  She gave me a little smile and a slight nod.  Rich was able to tell her the same thing.  We made it clear before she went under that we loved her.  I am glad I didn't know she wasn't coming to or I may not have been able to talk through the tears.

It is kind of weird to look at her laying there unconscious.  It should look more sad and scary than it does.  Instead I feel so happy for her because she is finally not struggling to breathe and sucking out mucus from her mouth and throat and peeing blood and throwing up and aching.  Even though she looked horrible with the tubes coming out of her, all I could think was finally she is getting some rest and some peace.

The one doc that performed the procedure to remove some fungus to culture and washed out her lungs said their was less fungus than they anticipated.  That is good.  They are going to grow the cultures and see if they can find out what kind of fungus it is so they can treat it better.

The other doc that performed the drain said the lungs were much worse than they thought.  There was a lot more fluid and looked worse than they imagined.

With the brain and the rest of her body fungus free I feel like we have a fighting chance.  She still has jaundice and they can't figure out why her brain is still wacky and many other infections but one day at a time.  And today was a good day.  Today was a day for a miracle and it happened!  

PhotoFluid draining off her lungs

PhotoIntubator and sedation

In surgery now

Michalla is in surgery. They are doing a couple of procedures on her lungs and putting in a picc line.  When I left the room there were 18 people in the room.  She was having some complications and it was crazy.  People rushing around like in the movies.  Things are under control now. I am not going to go into details about the surgeries.  Basically they are to help with the fungus in the lungs. She will have a line draining off fluid that will be in for a few to several days and a tube inserted into her lungs of some sort that will stay in for a while as well.  As they tell us the risks involved in each surgery they kept emphasizing that she might not be able to breathe on her own after this.  But basically we don't have a choice.  We have to take that risk.

We had the MRI and ultra sound earlier today.  I am going to testify right now THAT MIRACLES HAPPEN and PRAYERS ARE HEARD.   Yesterday on the scan it showed fungus starting into the brain.  It only showed the edge of the brain on the scan that is why they wanted the MRI.

First off, we got the ultra sound results.  The doc came into the room while she was still on the table and double checked the technicians work because she wasn't seeing any fungus in the liver or abdomen area.  With her having liver problems and with fungus in the lungs he couldn't believe there were no signs of it.  He made her redo the ultra sound with him watching and looking at the screen because he couldn't believe it. 

Next, we got the results of the MRI.  Three docs came in the room and usually whenever there are more than one doc it is to deliver bad news.  But.....they said they saw absolutely no signs of fungus in the brain!  The bone marrow doc's words were "we are all ecstatic and it is like the sunshine just rolled through this unit".

Of course they never tell you until after the results are back but if there had been fungus in the brain it would be a whole other level of risk and most likely brain surgery.  The doctors demeanor while talking to me, after they had mri results, was totally night and day difference than before they knew.  I think they all thought Michalla had a death sentence.  Nurses have been looking at me differently and not knowing what to say.  It was weird.  But as I have been telling nurses that there is no fungus in the brain, they just light up and say the whole unit had been crying and depressed once they heard. 

When I texted my mom the news she added two other words of the day to Lily's word of the day of Miracle: Faith and Healing.

I want to bear my testimony that the Lord is very aware of each one of us.  He has heard everyone of yours and my prayers.  He is a God of Miracles!  I know another miracle can happen with her lungs.  I know she is being watching over right now as she is in surgery. 

A million thank yous to everyone for all your love and prayers.  As a mother you love your children so much but over the past 24 hours as I have looked at Michalla and served her it has grown to another level. I feel like I have a little feeling of how much our Heavenly Father loves us. I feel like my chest is going to burst at times with love. I am so grateful for that feeling as it has helped me appreciate the love Heavenly Father has for each one of us.


Update from Bone Marrow Doc.

The bone marrow doctor just got done talking to us.  He said all the bacterial and fungus infections they thought she was going to get and were so surprised she hadn't gotten yet because they expected them on day one, are all showing up at once. She has a major infection throughout her body but that is responding to the antibiotics.  The major concern is the fungus infection that is extensive through her lungs and they are pretty sure in her brain and now he added he thinks it is in her abdomine and kidneys as well. The bad news is that she is on the main antifungal medicine they use to treat fungal infections and her body is resistant to it.

In dealing with the lungs only:  They are scrambling to arrange to do a procedure this afternoon (hopefully because the sooner the better) that goes into the lungs and gets some of the fungus and washes it out etc. etc.  I didn't exactly understand but the risk is that they have to do something with her breathing and the fear is that she won't be able to respond and breathe on her own once she comes to.  Even with this risk they feel they have no choice because without the surgery/procedure the fungus will take over her lungs.

The brain he didn't even want to address until after the MRI.  He says dealing with lungs is more common and they are more comfortable and familiar with it and have a chance of treating it.  The brain is not so common and may involve brain surgery and other life saving measures.  BUT....We don't even know if it is in the brain for sure until after the MRI so  I am keeping my fingers crossed.

The silver lining.....her counts on up again today to 2100.  The docs exact words were "if she didn't have counts this would be 10 million times harder to treat".  He said if these infections would have come earlier like they thought they would, she basically wouldn't have had a chance but since she engrafted earlier (I'm 100 percent sure was an act of God) she has a chance.

Day +19

PhotoMichalla trying to give me a smile.  This is at about 1 Am this morning after they spent about 30 minutes and 3 tries to get an iv line in her arm. The wash clothes are cool, which we kept switching out, to try to comfort her with her fever being so high. There were docs and nurses in her room all night.  She is not allowed to be left alone.

Michalla asked me this morning what is going on.  She says she only understands about 30% of it.  Even after I told her, I think she understands about 10% of it. 

We are waiting for bone marrow docs to come in this morning and then off to get mri, ultra sounds and possibly a procedure to go in and take a biopsy of what is in her lungs.  We are still needing surgery to get a permanent line put back in.  They don't know how much longer they will be able to get a line in her arm because she is retaining so much fluid. (She is up another 4 lbs today of fluid)

I know many many people are fasting and praying today.  They are felt.  While I am scared and anxious and this stomach ache I have may never go away :) , I also feel a peace that I didn't feel last night and there is a sense of calm in the room.  I know Michalla is being comforted by a higher power which gives me the most peace of all since there is very little I can do to comfort her. That is the worst feeling for a mom.

Thank you again family and friends and even strangers for your prayers.  Thank you Lily for the word of the day: MIRACLES

Wednesday, May 21, 2014

Day + 18 Not so good news Please send More Prayers!!!!

I have debated whether to even write this post.  I feel like people are getting sick of me asking for prayers and fasting.  But I feel desperate and in need of another miracle.  Michalla is still not breathing well and her fevers won't go away.  She is on several antibiotics that are treating the handful of infections she has.  Over the last week Michalla's brain has been acting weird.  You know after you get your wisdom teeth out and you are loopy and it is funny for a while.  Well, Michalla is confused all the time and keeps pulling out her lines. She is with it kind of  but not really.  They have taken her off all her nausea meds that could be causing it (like Benadryl, Phenagren, Atavan) and have way reduced her pain meds to see if it would help but it keeps getting worse.

Today she had a cat scan on her chest and sinus area. They discovered she has fungus growing in her lungs.  When the doc came in to deliver the news it sounded like a death sentence.  I was told it was very very hard to get rid of and treat.  I left the room and said to the nurse "It sounded like I just got delivered a death sentence" thinking she would reassure me and tell me they have medicine and that they treat this all the time etc.  Instead she just started crying and said "It's very hard to treat and get rid of. "

Tomorrow morning Michalla will have an mri on her brain and some ultra sounds to determine the extent of the fungus infection.

A specialist just came in the room from infectious disease.  She has been talking to me for the last 30 minutes about the seriousness of this.  They believe she also has fungus in the brain and that is what is causing her to be so confused.  I asked her point blank if Michalla was going to die and all she said was "this is very serious".  Nothing will kill the fungus other than her own immune system so getting counts fast is critical.  All this medicine they are putting her on is only to keep it at bay.  We are basically playing a game of can Michalla's immune system build up faster than the fungus can kill her.

The MRI tomorrow will be very telling as will the next week.  The doc told me the next week is very crucial as to whether Michalla can beat this.  The very best case is we get it under control and spend the next several months treating it. I don't even want to think about he worst case.  I feel so helpless watching her and trying to help her.  She is still throwing up and peeing blood.  She is so swollen and retaining so much fluid that she can't even lift her own legs into bed.  I have to lift them for her.  Her head hurts as do her lungs and chest. She still can't drink or eat so trying to get meds down is an all day affair.  With her broviac being removed because of infection getting iv meds have been a challenge too.

I am sorry I beg for help all the time but please please we need a miracle.  I know the Lord is in charge of Michalla's life but the day to day is so hard.  Sometimes it feels like there is never going to
be an end it sight.

  PhotoMichalla getting CAT scan.

Love to you all.

Tuesday, May 20, 2014

Day 17 Update--ICU and Engraftment!!!

As many of you know Michalla had to go to the ICU last night.  She wasn't able to breathe on her own and her liver wasn't working properly.  She also had fevers of 104 degrees.   It was a long night (thank you Clint for all your help).  Michalla slept according to the nurses a total of 1.5 hours, none of it in a row, just cat naps added together.  They gave her a ton of Lasix and she peed a liter of fluid.  This helped some of the fluid in her lungs.  They also discovered her central line (double broviac) was infected.  They did a surgery today to remove that.  She will have to have another one put in in a couple of days once she is more stable.

The good news is that her ANC count is 700!  That is remarkable.  As long as her count is still above 500 tomorrow, today will be considered the day she engrafts.  On our calendar no one guessed today.  Everyone is very surprised.  Faith was the closest with her guess of tomorrow (which she only guessed because it is her birthday).  All the docs and nurses thought it was at least a week out or more.  (Gotta love the tender mercies) Even though she feels miserable the counts coming in are helping her mouth sores.  She has actually been able to swallow just a little and should continue to heal.  Michalla told me a week ago that the day she can drink again will be the best day of her life EVER!  Hopefully that day is soon.

To be able to come home she has to be able to eat and drink and take her pills orally.  She will go home with plenty of IV medicines but some of them can only be given orally. There are many other things that have to happen but her mouth and gi tract healing up are huge steps.

Michalla still has a fever of 102 and is on oxygen but they have moved her back upstairs to her room. (  Yay!) They sent her up with her own nurse that just has to sit here and care for her one on one since she is very volatile. What a blessing to be out of the ICU though.  Fighting for air last night was so scary.  Even though she is still on oxygen and the breathing is very labored it is nothing like last night.

I know prayers are heard and answered.  The outpouring of love and support shown to Michalla and my family is almost hard to comprehend.  From the facebook post that Michalla was in the ICU people where putting Michalla's name in the temple, fasting, praying and sending love.  I have a firm testimony of miracles.  I know the Lord heard everyone of your prayers.  I can't thank you enough.  I have the best support system in the world.  I am surrounded by angles both near and far.  I love you all.

Monday, May 19, 2014

Day +16

Well fevers started a few days ago.  The culture is growing something so they know she has something but they don't know what it is yet. Michalla is on oxygen. Without it she can't breathe.  She is also shaking  a lot.  She is peeing blood and her eyes are yellow because she is having liver problems.  She is also really puffy and swollen because she is retaining water.  That is what they think is wrong with the lungs and why she needs the oxygen (water in the lungs).  She still can't eat or even swallow. It is a daily (all day long) battle to get the pills that can't be given in IV form down her. It is hard to see because I feel so helpless.  There is so little I can do rather than try to comfort her.  As a mom, you want to take it all a way or find a way to make it better but I can't. 

That's the bad news.  The good news is yesterday she actually had an ANC of 100 and today it didn't drop so it is still at 100. That is a sign that engraftment is on its way.  When you have an anc of 500 for two days in a row it is considered that you have engrafted.  We may hang out at 100 for a while before it moves again but any counts help. It should keep the mouth and G.I. tract lining from getting any worse and maybe even help it heal just a little.

After we engraft we will see what kind of graft vs. host systems we have to deal with. Hopefully just enough to make the transplant solid but not too much that Michalla can't recover and go home.

Monday, May 12, 2014

Day 9 update

We are boring according to the doctors.  Boring is a good thing around here.  They are so surprised that Michalla hasn't had any fevers or infections yet.  She came into this transplant with such high risk of nfection, having never recovered from the last round of chemo so being without 'counts' for over 2 months now.  They just can't believe how well she is doing.  Well is a relative term.  While I am sooooo thankful that she is doing well in the area that really matters, Michalla would argue that she isn't doing well at all.  They have had to up her pain meds. She also has to be on oxygen.  She is throwing up a lot, which is weird since she hasn' t been able to eat in several days.  She is in a lot of pain but one day at a time.  She has made it this far.

A big thank you goes out to the best chiropractor in the world.  David Free at Timpanogos Chiropractor made a trip to the hospital to adjust Michalla.  Her shoulder has been killing her for about a week.  No matter how many hours I rubbed it, it just wouldn't feel better.  I went into his office last week and asked him if there was anyway he could work on Michalla.  He doesn't have hospital rights at Primary Children's so he went to see her as a visitor on Saturday night and while he was there he adjusted her.  Sure enough, just like Michalla suspected, she had a rib out.  Her shoulder feels a million times better.  When I asked him about payment he said for Michalla to make him a plate of brownies when she got home. :)

Another tender mercy and the Lord watching out for Michalla through people here on this earth.

Friday, May 9, 2014

Day 6 update

It has been a long week. Michalla is now getting fed I.V.  She has also been given a pain pump that she can push every 15 minutes for pain.  (Those 15 minutes can't go by fast enough.--per Michalla).  I had to bail on her a couple of days this week because Faith was so sick throwing up that I didn't dare bring Michalla any sickness and I also had to take care of Faith.  This left her alone which wasn't very fun.  Thanks Heather Morley for stepping in last minute on Thursday.

Tuesday, May 6, 2014

Day 3 update

Today marks day 3 of the transplant.  Saturday is considered day zero. The mouth sores have started making it difficult to swallow.  I got corrected today.  I thought we would start seeing graft vs. host issues this week.  Everything we see these next three weeks until Michalla engrafts is all side-effects of the chemo and other drugs.  They predict by this weekend she won't be able to eat anymore and have to get 'fed' IV.  Then after she engrafts we will see how the body responds to the new bone marrow. step at a time.  We made it to transplant!  Now we will focus on making it to engraftment. Then we will focus on making it through graft vs. host issues.

Monday, May 5, 2014

Happy BMT Birthday to Michalla!

5/3/14...Michalla's new birthday. This is the day a stranger saved her life. The nurses sang happy birthday to Michalla and we all wore attractive birthday hats. Rick at Smart Cookie donated cookies for the occasion. Michalla got a new blanket and some make-up from the staff as bday gifts and cards and other gifts from family and friends.  It is kind of weird.  There is all this build-up for the big day and it is kind of anti-climatic. It looks a lot like a blood transfusion but is super thick (like honey thick) and took hours to go into her body.  The nurses say it will be a few days until we see any side-effets and graft vs. host stuff going on. Right now she is still just sick from the chemo and surgery she had last week. Tell that to Michalla though.  Her body is ACHING and she is having some chest pains.

They make a chart where everyone guesses what day Michalla will engraft.  This is basically when the new marrow gets into its correct place and the body can start producing its own white blood cells. It is usually in about 3 to 4 weeks.  During this time Michalla is at high risk for infection.  We are having to be extremely cautious with what she eats (which translates into very little choices are allowed) and with what and who she is exposed to.  Michalla is sleeping a lot.  This makes me happy. I would rather have her sleep than be in pain.

As these next few weeks are critical in both the fact she has never been at a higher risk for infection and in telling whether or not the body is going to accept the new bone marrow as its own, I ask for your continued prayers.  Kaityln's death has reminded me just how fragile life is and how things could change in an instant around here.  However, I find peace in the fact that I KNOW the Lord has heard every one of our prayers and showers down blessings upon us everyday. The Lord is definitely a Lord of Miracles.

Michalla and her cute boyfriend Clint

Special delivery. This man received the blood early that morning and had been prepping it right up until about 15 minutes before transplant. (Which was about 2:15 PM)

Cute sisters.

Calendar to guess engraftment date

Michalla literally holding her life in her hands.

Faith putting in the money to make her guess.

Lots of fun bday gifts

waiting for the "party" to start