Day +6

Well team, I come tonite with rough news... Today was a hard day!  Addie rested very nicely but her body is working harder than ever!  We found out today that her heart is struggling... It is unclear at this point why!  Right now what we know is that her heart is working too hard and it is basically drowning in fluid.  They have no idea at this point why this is happening.  It could be a few different things causing it!  Best case scenario is that her heart is just fluid overloaded, so if we get the fluid off it will make a full recovery.  Worst case scenario is that Addie has congestive heart failure and her heart will be permanently damaged.  Addie has had chemo that can cause heart damage but the doctors are saying that it is very uncommon at this point to see!  They also said that with the chemo regimen she underwent for her transplant it is uncommon to see heart damage.  It is also possible that Addie has a virus or an infection in her heart that is causing this.  

They are giving Addie some medicine to help her heart work better and are also giving her diuretics to try and push the fluid off of her heart and out of her lungs.  Thus far we have not had much luck with diuretics but praying that this time they will help.  Her kidneys are still not functioning 100% and her liver is also enlarged due to her heart function.  Please Lord let her turn the corner!!  I miss her so much!! 

Prayers, prayers and more prayers... Her body has been so resilient up until this point, please Lord don't let it give up now!! Please help her fight this, give her heart strength and push the fluid where it belongs!!  Please Jesus help our little sweetheart! Please let there be no permanent damage to her precious organs!  

Go Team Addie!

• Hebrews 11:1

  Now faith is being sure of what we hope for and certain of what we do not see.

  • Matthew 15:28

    Then Jesus answered, "Woman, you have great faith! Your request is granted." And her daughter was healed from that very hour.

Day +5

Day +5 started off a little bumpy and with a change of scenery.  Addie had a really difficult night due to some difficulty with her lungs.  Yesterday afternoon we noticed that she was breathing rapidly and was requiring a little oxygen to maintain a proper oxygen saturation level.   As the day went on, this slowly worsened.  She required more time for her oxygen levels to rise and she was working much harder to breath.  An X-ray was taken of her chest and it showed that fluid was in her chest.  Throughout the night we tried a few things to address this and nothing was really improving. A decision was made to transfer Addie to the pediatric intensive care unit (PICU).   We arrived in our new room, hopefully only our temporary home, early this morning!  They transferred her to the PICU for monitoring and to insure that if her breathing worsened they would have the ability to address it!

They are really wonderful up here and we feel incredibly taken care of.  Addie has been much more comfortable since we arrived and her heart rate and respiratory rate are a little better!  She is getting oxygen and is being monitored closely.  The worry is that Addie may have pneumonia or another infection around her lungs.  They placed her on a few different antibiotics for prevention of these and will continue to monitor her vitals and take daily chest X-rays to determine what the treatment should be. At this point she is stable and being managed very well!!  

Please put those prayers in overdrive tonite and lets pray this yucky lung stuff away.  Pray that the fluid would vanish and Addie would begin breathing normally again!! Please pray that there is no infection and if an infection is brewing that the antibiotics would take care of it!  Please pray that our time here in the ICU is short-lived and that we don't find ourselves in any emergent situations!  Please Lord heal my sweet Addie Bean, mend her organs and let her body begin to support itself once again!  Please Jesus let those counts rise... Neutrophils, neutrophils and more neutrophils!!!  

This is a rough ride... It is true that I couldn't prepare myself for what Addie was in for during this time.  How can you really adequately prepare yourself to see your sweet helpless child so sick?!  I can't praise the doctors and nurses enough for everything they are doing to keep my baby comfortable!  Tomorrow is a new day, always hopeful that it will be a better day!!  

Go Team Addie!

2 Corinthians 4: 17-18 “For our present troubles are small and won’t last very long.  Yet they produce for us a glory that vastly outweighs them and will last forever.  So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen.  For the things we see now will soon be gone, but the things we cannot see will last forever.” 

I can't wait to hear that sweet voice again and see that personality come back!!  How I miss my special girl!!  A little video to cheer us all up :)

Day +4

I can't say how thankful I am for my wonderful husband and father-in-law... They did such a great job caring for my girl while I was at home!!  Grace was having a hard time and needed a little Mommy time, so I was home the last few days giving my other girls some much needed LOVE!!  Those sweethearts have done such an amazing job along this roller-coaster ride we call life!!  It is a lot to ask a 6 year old to understand and accept, but she has done so well.  Grace has such a big heart, so full of love for her sisters... But with great love unfortunately comes great worry!  Please pray for her, pray that God covers her in His grace and soothes her worries, pray that He gives her wisdom beyond her years to understand things that she shouldn't have to!!  It breaks my heart that my sweet girl worries that her little sister may die... that is something no sibling should ever have to worry about.  Grace hears that cancer kills people and she knows that her sister has cancer... She puts the two together and the tears fall!!  Please Jesus erase these worries from her mind... Give her peace, let her feel Your love and our love, let her know that her little sister will be home and healthy soon enough!  

Grandpa and Daddy cared for Addie during a really rough time.  She was absolutely miserable, Reed said she didn't get any sleep Thursday night and was basically up the entire night and the following day dry-heaving and gagging!  Luckily, we have amazing doctors caring for us and they were able to find a combination of medicines that are now helping Addie rest!  Since I have been here today she seems more comfortable.  She is still extremely sick but is no longer wrenching and gagging non-stop!!  

What is happening in her little body is that her GI tract, esophagus and oral cavity is ulcerated and sloughing (mucositis).  Her bodies coping mechanism for this is to produce extra mucous to coat the tissue and to send extra inflammatory cells to those areas, this and the tissue that is sloughing off is producing a very thick stringy mucous.  Her body is trying to get this mucous out and it is causing Addie to choke, gag and vomit!  Luckily the medicines are working to ease her gag reflex and her stomach... Thank you Jesus for these incredible doctors and nurses that have been working so hard to make Addie Bean comfortable! 

Now that Addie has mucositis she is at an even higher risk for infection.  She continues to randomly spike fevers which can be a sign of an infection.  The doctors are keeping her on a few different antibiotics for protection.  Please pray that Addie doesn't get an infection, that could be catostrophic during this time!  Also please continue to pray that The Lord guards her organs and that engraftment is near!  

It is incredibly difficult to see our little Addie Bean so miserable.... Definitely a reality as to what she is going through!! One can't help but ask why?! Why her?!  But then in the same thought I find myself thankful that she is in this place!!  Thankful that her cancer responded and that she was able to get a transplant!!  Thankful for the research that has been done and is being done to cure this deadly cancer!  Thankful for the wonderful doctors that are helping her fight this!!  I pray that the doctors and researchers continue to work towards a cure and that they would know each and every day how incredibly important they are and how incredibly thankful I am for them!!  Please Jesus let a cure be found, let there be a time soon when no child has to suffer through this harsh treatment or die from this awful disease!! 

I know He has a plan and one day we will look back on this and see the positive that came from it!! She will continue to fight and I will continue to love her for every single minute of every day!!  

Go Team Addie!

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11

Day +1

I have one very sick little girl on my hands!  Miraculously there is still no obvious mucositis and her pain appears to be managed... Each day without that is a huge blessing for Addie, because each day brings us closer to her cells repopulating and her body being able to fight once again!  The nausea she is experiencing is awful, when she is awake she is usually throwing up.  She was maybe up for a total of one hour today and much of that was me waking her up to go to the bathroom and her vomiting!  

As miserable as she is, she isn't crying or complaining.  She just sleeps so peacefully, a little angel!   She is so strong... This little spirit that refuses to complain and refuses to let anything bring her down.  She is the bravest, toughest little girl and I just happen to be the lucky one she calls Mom!!  It is me who gets to hold her hand through this journey, rub her back when she is sleepy, and kiss her sweet cheeks when she isn't feeling good... I am truly blessed to call this sweet little girl my daughter!  I am so fortunate to be here with her, caring for her and giving her all the love I possibly can!! 

Addie Lynn Brenden you are an inspiration to so many!!  You are bringing glory to God's kingdom.  One day you will know all of the lives you have touched through your fight and all the love and support you received along the way!! 

Dear Lord, please continue to walk with my baby, continue to shield her from any negative complications and protect her organs from harm.  Please let her be free from this awful cancer.  Continue to give her strength and cover her in Your grace!!  Let her feel the love that is surrounding her!! 

Thank you again to everyone who has sent gifts, mailed letters, brought food, and visited.  Our room is looking bright and full of love, exactly what I was hoping for!!  She has really enjoyed the books she has received and has actually let me read to her for a short time each day!!  Thank you also for the kind and supportive comments.  I am proud to be a part of TEAM ADDIE... the best team in town!!! 

Go Team Addie!

O LORD, be gracious to us; we long for you.  Be our strength every morning, our salvation in time of distress.  

Isaiah 33:2

Happy Transplant Day

The big day has arrived!  Addie had her transplant today at 2:00.  She was feeling awfully cruddy this morning and really hadn't even opened her eyes but miraculously right around that time she woke up, wanted to wear a beautiful dress and even managed to show off that beautiful simile of hers!  Child Life is so amazing here and they were exceptionally wonderful today.  They made a special sign, brought a cookie cake and even got Addie some really nice gifts.  We feel so blessed to be at this hospital with these amazing individuals caring for us.  They have been great at keeping us informed and also at making sure Addie is as comfortable and happy as possible.  

What is next?! We wait... Wait for her cells to repopulate and her body to recover!  Her kidneys are still a bit finicky but we are now being followed by the "kidney team" and they are INCREDIBLE!  They are so kind and informative, really an amazing group!!  Her liver enzymes have decreased some but are still much higher than normal, praying they will continue to drop and that she will not have any damage to either her kidneys or liver!  She continues to throw up and have diarrhea, praying that comes to an end soon.  Her pain is still manageable, praying that too continues!

A special thanks to the amazing staff here at the University of Iowa! 

Lord Jesus let those cells engraft and let my baby girl be healed!

Go Team Addie!

God is our Refuge and Strength, a very present and well-proved help in trouble. 

Psalm 46:1

Day -1

Here we are almost a week into this process!! The chemotherapy is done and now we just wait!  God willing, November 8 will have been the last chemo that Addie will ever have to receive.  Please God make it so!!

We have been keeping busy here at the hospital and have had some pretty special visitors!!  We finally got to see sisters and Daddy on Sunday, both Mommy and Addie needed that!!  

Addie had an NG tube placed for proper nutrition and to aid in the delivery of her oral meds, she was pretty mad at me that day... Lots of daggers were sent my way!!  She is definitely adjusting to it, her ability to adapt is unbelievable!  Her strength and perseverance is an inspiration and I am in awe of her every day!! 

She is definitely feeling pretty cruddy and hasn't been her usual cheerful self the last few days.  She isn't having any pain so far, praise Jesus, but her tummy is incredibly upset.  So far her body is handling everything ok, her kidney and liver levels were elevated today, which gives Momma a lot of anxiety!! I don't know how they couldn't be with the large amount of toxins she has had put into her body but it is still very scary!  This process is going to bring about a lot of new scary things I am afraid.  I just pray that Addie's body stays strong and can repair itself... She is so strong, such an amazing spirit!! Please pray that there is no permanent damage to her organs, pray that we see her kidney and liver function/enzymes resume normal levels over the next day or so and it is just a temporary side effect from the chemotherapy!  

Addie is officially neutropenic, which means she has no immune system and her body can't fight anything.  It is more important than ever that we pray for no infections or viruses.  Praying also that her body welcomes the new cells, prayers for a record breaking engraftment!!  I asked the doctor what the average time frame for cells to engraft is and he said between 7-10 days.  This is how long it typically takes the new cells to incorporate and for her body to begin making its own RBC, platelets and WBCs... This is an incredibly variable amount of time and it can take much longer than this!! Until Addie's counts begin to recover, she will be very sick!!  Unfortunately, we have only started the downhill decent.   It is likely in the next day or two she will get severe mucositis from her mouth to her anus... This is incredibly painful and also increases her risk for an infection!  It is pretty definitive that she will get it, please pray that it isn't severe and it is short lived!!  Please pray that the pain medicine we have to manage it works and that she can rest!!  

Thank you everyone for your prayers... They are especially important over the next month.  Addie's life will forever be unclear, as all of ours are, but forever she will fight and forever we will put our trust in Him!!  I feel your support and I feel His comfort and I thank you all for continuing to pray for my sweet Addie girl and our family!! 

Go Team Addie!

fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous hand. 

Isaiah 41:10

Bradley with his matching feeding tube!

Gratitude

We have been touched by so many amazing people through Addie'e journey.  I struggle with not being able to truly show how appreciative and thankful I am for everything that everyone has done for us.  I am so touched each day following a post, when I get to read everyone's encouraging comments.  I feel so blessed by everyone who has been supporting our family through this.  I pray you all know how incredibly gracious I am for all of you!!

These are only a few of the amazing things that people have done for us recently... I wish I could have documented each and every thing.  I believe it would have been impossible because of the amount of support we have received, I would have had to hire it out :)  That speaks volumes to TEAM ADDIE!!  It is overwhelming the love and support Addie continues to get... THANK you Jesus for all of these incredible people you have surrounded us with!!  Without all of you, this journey would be much darker and lonelier.

 Our concrete angel... LOVE.  

 A walk for cancer awareness by my sweet family and a few friends.

 THE blanket!!

 Hats... LOVE them ALL!!

Beautiful Handmade blankets...

 CF Student Senate bake sale for Addie... Thank you Megan and CF Senate, we are so thankful and  touched by the time you took to put this together.  How incredibly thoughtful!!  Thanks to all who worked and supported the bake sale as well.  

A run for ADDIE...  DesMoines half and full marathon.

I have to give some major love to this man right now... Carter Moore you are truly amazing and you have been so incredibe through all of this.  We feel so blessed to have you in our lives.  THANK YOU to you, your sweet family and your great TEAM for everything you have done for us.  

 Emma... this sweet girl, rather than have her friends bring her presents for her birthday she had them bring gifts for Addie.  This was so touching, INCREDIBLE.  Emma you have a heart of gold and I hope you know how touched we all feel by your giving spirit.  Grace and Addie LOVED the gifts that your friends bought.  Thank you so much sweet girls.  That binder of pictures melted my heart, something that I will keep forever.  I will tell Addie for years to come how a sweet girl gave her all of her birthday presents and her friends took the time to draw her beautiful pictures with words of encouragement.  

A SnowWhite dress and hat, handmade by two sisters who heard our story on facebook.  BEAUTIFUL. Thank you ladies, my girls will enjoy these for years to come!

Is it crazy to say that you LOVE people you haven't even met?!  Well that is the feeling I have when I receive these things and read your comments.  Thank you for the love you have given my family.  

Go Team Addie

Be devoted to one another in love.  Honor one another above yourselves.  

Romans 12:10