Day +19

Today is a good day... Addie has officially turned the corner and is headed down the road to recovery!!  She is doing so much better, still exhausted and sedated, but is doing miraculously well!!  She is off of her BIPAP mask and is breathing perfectly on her own!  They have her on a little bit of oxygen just to give her heart some extra help!  She has not needed dialysis for the past three days and her kidney numbers have not worsened!!  She is making urine and we have been doing lots of potty dances!!  They removed her urine catheter today, which I was ecstatic to see go!!  It was convenient but a definite risk for infection!!!  She is shedding her skin :) which is a normal part of transplant but otherwise looks great!!  She is very weak and still sleeps most of the day!  They are allowing her to drink water and suck on Popsicles which she enjoys!!  They continue to feed her through a tube in her nose and intravenously and she is tolerating all of that very well!! 

Addie has another eccocardiogram tomorrow... Please pray that her heart has made a full recovery and that she can be off of the heart medicine!!  Her BP has been a little finicky the past few days and the doctors feel it is mainly due to her kidney function... Praying that those kidneys continue to improve!! Pending her heart and her kidneys, we may be able to move downstairs very soon... I don't like to get ahead of myself because you never know what the day will bring but we are definitely closer today than we were yesterday :) she is definitely moving in the right direction!! 

I can not describe how incredibly thankful I am that my precious baby is healing!!  It really is a miracle that she is here today and doing as good as she is!!  I have heard multiple nurses tell me that it isn't often that they see a transplant child go back downstairs after being in the PICU. I just had a nurse tell me that it is truly amazing that Addie was extubated (taken off the ventilator).  She told me that the majority of transplant patients that are intubated do not survive!!  Wow, did that make my heart shake... It made me sad, scared and unbelievably happy all at the same time!!  I am saddened for those families that have to say goodbye to their precious children.  I am scared that Addie could still regress but I am so incredibly happy that she is still here with me today!!  I just said to Reed that I almost feel more anxious now... Scared that once again the floor will drop out from beneath us and that we will once again be close to losing our baby girl!!  But then I step back and remind myself to not fear but REJOICE in this moment!!! I push the fear and worry out and instead fill my heart with gratitude to Him, thanksgiving for saving my sweet Addie Bean!!  He is the reason that she is here right now... I felt Him in this room with us, healing her and comforting me!!  Thank you Jesus, for your unfailing love and your miraculous healing power!!  Thank you for these wonderful doctors and nurses and for giving them the wisdom to save my child!!  I hate that I feel nervous at my excitement and happiness and I hate that my tummy is rumbling right now writing this post.  I hate that the devil puts fear in our minds and is whispering to me right now, "Mandie, don't be happy in this moment because Addie may still not make it!"  I say forget that nonsense, I will trust my heart where Jesus resides and I will push those fears aside and give thanks for this moment!! 

Each day brings us closer to recovery and closer to Him!  Please continue to pray for Addie's body and her fragile organs.  She continues to run fevers sporadically, please say a prayer that she will NOT get an infection and it is merely her body recovering and working to support itself... Please Jesus NO infections!  Addie still faces a long journey to conquer this but I know that she can do it... No doubts that my baby will be victorious!! 

Go Team Addie

“But Jesus looked at them and said to them, ‘With men this is impossible, but with God all things are possible.’”

Matthew 19:26

Addie in her squishy bandages to make her mask more comfortable, taking a break from her BIPAP to see how those lungs would do on their own!

Daddy wasn't going to shave his beard until Addie came home but the second she woke up and saw that furry mess she put an end to that... Thank you Addie!!!  She is the boss of the family!!

Smiles Today

God is so good!!  Look what we got to see this morning...

That smile is back, our little Addie is doing so much better... Praise Jesus!!!  At about 1:30 AM she turned the corner and her lungs started doing better!!  Her chest X-ray this morning looked much better and her kidney numbers are stable, which is miraculous considering how much diuretics they gave her through the night!!  The diuretics are working and she may not have to have dialysis today!!!  The swings in either direction up here are intense but this swing brought lots of happiness to room 5!!! 

Big win for Team Addie 

Day +16

"A life full of praises and thankfulness becomes a life filled with miracles.  Instead of trying to be in control, you focus on Me and what I am doing." 

Thankfulness in times of trial is not an easy task.  However, the more I find myself thanking him the more peace and reassurance I feel!!  Even the simplest of thank yous brings happiness to Him!!!  No matter what we face and no matter how hard the day seems, if we open our eyes and our hearts wide enough we will see the many blessings our Heavenly Father bestows upon us!!!  

Today has been one of those days full of doubt... Did we make the right decisions?! Is Addie going to recover, can her organs be healthy once again?! Is this going to set us back in her cancer treatment?!  So many fears and so many unknowns... Every day I have to force these thoughts out of mind.   I remind myself to look to Him for the answers, I tell myself that tomorrow doesn't matter, to enjoy today and I reassure myself that He will never forsake me!!! I have to continuously tell myself that His will for Addie is great and perfect, I have to contine to trust in His plan for her!!  I force out the fear, swallow my anxiety and I give thanks... Thanks for another day with my beautiful girl, for my family and my three wonderful girls, for the amazing people who continue to pour out their love and support upon us and to Him for never leaving my side, for holding my hand and hugging my heart!!  Honestly, if I were walking this path alone I would have given up long ago, it is hard, so hard and it hurts... But He is there!!! 

Addie was taken off her ventilator today!!! We were so anxious to get that tube out and to have our girl back!!  Unfortunately, getting that tube out did not make for an easy day, quite the opposite actually! Addie's body is so responsive to any little imbalances, especially her lungs!! She continues to have an issue with pulmonary edema (fluid in her lungs) which is what made her coming off of the ventilator a little tricky!!  It is still very unclear as to what is causing Addie to retain fluid, why it happened and why it continues to happen. Please pray for this, pray for clarity and for healing!! Pray that Addie will continue to improve and the fluid will diurese and never return!!!

Currently Addie's lungs are being supported by a BIPAP machine.  The BIPAP works by forcing air into Addie's mouth and down into her lungs!!!  She looks like Darth Vader :) and I am told it makes her feel like she is sticking her head out of a car window going about 20 mph.  She is tolerating it very well and so far it has kept her from needing to be re-intubated!!  I have heard multiple times tonite... "Addie is one tough girl, I can't believe how well she is tolerating that mask!! And I can't believe she is breathing so effortlessly despite how bad her lungs look!" (Both reassuring and nauseating all at the same time!)  This is the first time the PICU has really been able to see that Addie Brenden gusto, they are definitely seeing who is the boss!!!  I thank Jesus that Addie is tolerating the mask and that it is helping her... It was very touch and go as to if it was going to work but so far so good!!! Praying, praying that continues!! 

Each minute up here feels so uncertain and at any given moment things change!!  I am so thankful that Addie continues to improve but there are definite moments throughout the day that I worry she may regress... Praise God this has not been the case!!!  I am so hesitant to say we are past things when there are still so many unknown factors but what I do know for now is that Addie's heart is improving and the doctors are extremely happy.  She doesn't have VOD yet and hopefully never will!!  She is off of the ventilator with significant help from the BIPAP.  Her kidneys remain on the outs and are being helped with a three hour hemodialysis treatment each day.  The kidney doctors hope that her kidneys will make a full recovery and the ICU doctors are hopeful that her lungs will eventually heal.  The doctors tell me these things take time and of course nothing is certain!!  I can't say that we have an over abundance of time because of Addie's cancer protocol but we can only do what Addie's body will allow!!  

Today I am incredibly thankful she is here, holding my hand and saying "momma"... Thank you Jesus so much for allowing me to hear that sweet voice!!! I pray that Addie continues to improve each day!!  I pray that she stays hopeful!!  Soon enough it won't matter why this happened because it will all be gone... A miracle in the making AKA, Addie Lynn Brenden! 

Happy Thanksgiving Team Addie.

Getting some much needed sister love before her vent was removed! 

Goosie and our little Darth Vader!  :)

Thank you to Jannelle Wilks at Main Street Sweets for making these for our family and the staff here at the hospital... Hands down BEST cookies ever!!

Also thank you to the Mudd Group, their wonderful employees, Ashley Thompson, and the Zimmerman family for the amazing thanksgiving meals we received!!! 

Also thanks MerriLee for the beautiful quilt and for visiting!  What a thoughtful and meaningful gift!  

This Thanksgiving was something special because of all of you and because of the wonderful people we shared it with! 

Day +14

My devotional has continued to be about thankfulness and tonight it said...  Draw near to me with a grateful heart, and My Presence will fill you with joy and peace.  It also said if you practice thankfulness consistently, negative thought patterns will grow weaker and weaker, and if you are busy being thankful you don't have time for worry or fear... Thank you Jesus for these words, for putting exactly what I need to hear in front of me!  I could sit all day and worry... There are so many things to fear and stress about as Addie's future remains so unclear!!  Oddly, I continue to find myself at peace, and not consumed with worry!!  My former self would not have been so... I was that girl who worried about everything and anything!!  I was that mother that felt like I had control over everything, the text book satellite Mom.  I felt that if I were near nothing could harm my babies.  Well here I lay in the PICU on day 22 post transplant with my precious baby on a ventilator... How is that for a loss of control?!  It was control that I never had, that never belonged to me!!  Talk about a reality check... I thank God for that reality check... Would I have preferred it in a less tragic way, not the punch in the gut that I received?! Absolutely!!  But I was blind and perhaps a suddle slap in the face wouldn't have done the trick!!!  As awful as this is and as much as it hurts to see my baby sick, I am so thankful for this new awareness, for His Presence! It is so true that when we need Him, He is there!!  He is always there!!  It is a feeling that is indescribable, to have so much hurt and feel so much love all at the same time!!  I have NO control over anything but what I do have is the ability to pray and trust in Him.  I trust that his control is far better than mine, he loves Addie even more than I!!

Tonight I am incredibly thankful for the knowledge and technology that we possess and for the amazing doctors and nurses that care for my sweet Addie Bean!!  I am so grateful for this machine that saved my daughters life...

Praise Jesus for these things... Thank you Lord for giving my baby another chance at life!  I continue to pray that I will watch her grow.  That I will be able to walk her to kindergarten and enjoy her sporting events.  That I will see her in her beautiful prom dress and some day move her into college!  I pray that someday she makes me loads of grandbabies!!  I pray for these things almost daily... There will be no greater gift to me than for me to raise my babies, and watch them grow into beautiful women, women of God!!  I know Addie's journey will bring glory to God and our team is making His wonderful name known!!  

Hallelujah for another good day... A great day!!  Addie was taken off of her dialysis machine today to see what those little kidneys of hers will do!! Praying for pee, pee and more pee :). If her kidneys do well and the fluid balance is regulated than we should hear that sweet voice again in a day or two!!  I can't wait to hear that voice, see that smile and kiss those big lips!!

Please continue to pray that her liver stays unharmed... Today was a good liver day!  Also pray that her platelets will take hold.  She has been burning through her platelets (1-2 transfusions/day).  Historically, platelets are the last to take residence in the bone marrow so it isn't uncommon what Addie is experiencing. However, platelet wasting can also sometimes be an indicator of liver injury and VOD, praying that will not be the case!! 

Please Jesus let us see that smile soon...

Go Team Addie!  

Day +13

Here we are 21 days in... Addie remains stable but still quite sick!  Each day it seems that something turns up and puts just a tiny kink in our road to recovery.  She is far better than she was last Tuesday but she is still very far from going back downstairs and eventually home!   Currently Addie is dealing with something called rhabdomyolysis which can be caused by a number of things, it can harm her kidneys, liver and skeletal muscles.  The treatment for it is typically dialysis which is what we are already on but what that means is that this whole dialysis process is being dragged on!!  From a ventilator/breathing stand point, Addie is doing really well and will be ready to come off of that as soon as the dialysis is over!  Her heart is also doing quite well, which I am beyond thankful for!! Thank you Jesus!!!  Addie will be getting a new eccocardiogram soon to examine just exactly what her heart function is.  I am praying all will be well and she will be able to come off of her heart medicine soon!! 

We have a something quite scary knocking at the front door... It is called VOD and it appears that Addie may be headed in that direction!  This can cause liver damage and death, it is typically self limiting but if the damage is severe the liver can not be repaired!  Please ask Our Heavenly Father to see Addie through this, to guard her liver and protect it from damage!!  Please Jesus let Addie be past the bumps in the road, please Lord see her past this!!!

On an even more somber note... My little sweetheart seems sad, quite down about her current situation!  Our Addie doesn't get sad or hopeless and throughout all of this I have never seen her cry until yesterday!  It is absolutely heartbreaking to see the hurt in her eyes and see those big crocodile tears fall down her checks!!!  I have been praying overtime that He would comfort her, letting her know this is just temporary and she will be past this soon!!   Please pray the same, pray that she would feel our love and that His peace would fall over her!!  Please Lord let her not be in pain and please don't let her lose hope or lose that will to fight!!  Please Jesus let this be over soon... Let me see my baby girl again, let me hear her sweet voice and see her precious smile!!!  Give us our Addie back!!! 

We love you Father and thank you for everything you do!!  I thank you for carrying me through this and allowing me to constantly feel your loving presence!! 

Go Team Addie!  

Day +10

Today was a good day... A stable day!  I hesitate saying good for fear that in the next ten minutes it could turn bad!  That seems to be how things go here in the ICU, one minute Addie is chugging along perfectly and then next her BP is 60/30 and we have every doctor on the floor in our room... Our day yesterday!!  I feel at ease saying today was stable... Because that is a great place to be considering where we are!!

Yesterday was a bumpy ride and almost gave me a nervous breakdown!  I'm afraid the more days I spend here the less capable I feel at handling these very high tense/stressful situations!  Yesterday brought a very scary BP situation and more fevers.  We also discovered that Addie definitely has a fungal infection. The doctors also feel that there may be more of an infection going on than what they can detect.  I heard "It is likely Addie has sepsis!" or "Addie is septic!" (an infection in the blood stream, really dangerous) too many times yesterday.  The thought alone of sepsis gives any cancer Mom severe anxiety and especially a post transplant cancer Mom (Momcologist, I was told by a friend is the proper term for us)! We have sent cultures and so far things have been negative, thank you Jesus!!! They are covering Addie with very aggressive and broad spectrum antibiotics, and we are praying hard that these will knock out anything trying to grow!!  In spite of the low blood pressure crisis, fevers and a possible infection, yesterday was still a win in my book!!!  We got great news concerning her heart function and they were able to correct the BP issue quickly and minimally.  Frankly, everyday she is here with us is a WIN!!!  

Can I just say thank you Jesus for MEDICINE!!! Thank God for antibiotics, anti-fungals, blood products, norepinephrine, and so many other medicines that are saving my babies life!!

The plan... It is still really unclear and very dependent on what Addie's body is capable of!  Ideally, they will wean her off of dialysis and her kidneys will be able to manage the fluid and her heart function will stay normal!  The weaning process has already begun and time will tell how Addie responds!!  They did an ultrasound today of Addie's kidneys and they looked good, which was amazing news!!  Other great news... She is officially ENGRAFTING!!!!  We have a white count!!! Yay!!!  Even with everything that is going on, Addie's body was still able to engraft and in a really good amount of time... I find that to be a miracle in itself and could not be more thankful that He continues to be so unbelievably gracious and faithful to our little Addie Bean!!  I can't scream it loud enough... God is so GOOD, praise him!!! 

Here is my theory about what occurred and why we are here... Addie got acute kidney injury due to her chemotherapy regiment for transplant, which in turn led to fluid backing up into her lungs and around her heart.  The fluid caused her heart to function poorly and put her into congestive heart failure.  If we get the fluid balanced and give her kidneys a chance to catch up, her body will repair itself and she will be left with no permanent damage... I am also holding onto the fact that engraftment causes fevers and inflammation which explains why Addie has been spiking fevers recently!  That is my HOPE, my prayer!! But let's be honest, what do I know?!   A Mom can dream can't she?!  That would be the best case scenario and that is what this Momcologist is going to hold onto until they tell me otherwise!!  They tell me my diagnosis is unlikely but Addie is anything but "normal" and she definitely doesn't follow statistics!! 

Lastly, I wanted to share something with you all... I am asked often how I do it, how am I so strong or how do I stay so positive?!  And I never can come up with a good answer because in my mind I think "what am I doing, I'm far from strong and I have fears that I fight with every day?!" What I know is that each day I try to be the best Mom I can be and I work very hard at keeping it together for my family... Desperately trying to make this nightmare the least damaging as possible!!  The only thing I can think of to explain how I get thru each day is JESUS... I don't feel strong, I fight to be positive and I have no idea how I manage to keep it together from day to day!!  It isn't me... It is something far greater than me leading me through this journey with Addie, it is HIM!!  I am so incredibly thankful that I am never alone, not for a second! And even more thankful that Addie is never alone!!  Tonight in my devotional this is what it read... 

I was given this devotional three days ago and each day I have opened it to read it and each day it has spoken directly to my heart... Giving me the words I needed to ease my anxiety, calm my fears and start my next day!!  I just said today to the chaplain here that my heart overflows with thankfulness for Him, for our families and for everyone that is supporting us through this!  I told her that I felt like I couldn't show Him or tell Him enough how thankful I am for saving my baby girl's life.  The chaplain said it perfectly... She said it isn't about the number of times you thank Him that He cares about it is the direction you turn your heart.  Well Jesus, my heart is pointed straight at you and I pray that I will forever be able to walk through life with my eyes wide open, continuing to see You in it all!! 

Prayers please that someday soon this nightmare will be past us and we can be out of the ICU, back on schedule and watching my wild woman run the hallways of 3JCP with a perfect heart, liver, lungs and kidneys!  

Go Team Addie!! 

Day +8

Wow... The outpouring of love and support that I have heard about and caught glimpses of are absolutely amazing!!!  Addie has the best team in town... Loved by so many!!  Lord hear our prayers!!! 

Today was a good day...  Addie is responding very positively so far to the treatment!! There are still too many variables to give any insight on what is to come but what I know is that she is here with us!!!  The future remains unclear and she has a long road ahead but I am praying that we are climbing that hill and won't ever be going back!!!  

Addie's heart function more than doubled today and her body has been happily letting go of the fluid!!  The doctors were surprised and extremely happy with the outcome so far!  However, because the cause is still unknown it is very unclear what the endpoint will be!!  In spite of all of the unknowns, I find myself at peace.  Today we were able to be a family and spend time with a dear friend.  I did not allow the fear in what lies ahead to ruin a perfectly good day... A day that I was able to spend with my beautiful girls, all THREE of them!!  We have to celebrate and give thanks for each victory and yesterday was huge and today was right behind that, a win for Team Addie!! 

Thank you Jesus for continuing to walk this road with us!!  Please Lord fill Addie with your grace and your love.  Let her know your presence more than ever and let her feel the love that we all have for her.  Please make it known that she is not alone in this fight!  We are here for her every step of the way!!   

I can't wait to see her... See that smile, hear that sweet voice!!  I would even take a huge tantrum right now, anything!!  Please Lord let this time pass quickly, let it merely be a bump in the road, an event that proves the strength Addie has and the power You have to heal!! 

Thank you everyone!! Thank you to the doctors and nurses again for providing such wonderful care to my baby... Lord be with our medical team, give them wisdom to know how to make my sweetheart well once again!  

Go Team Addie!! 

"Do not be afraid for I am with you."

Isaiah 43:4

Day +7

I witnessed a miracle today... My baby girl was triumphant against all odds!!  Lord Jesus I am on my knees thanking you for saving my baby girl, for giving her more time here with us and for helping her continue to win this battle!!  

Today was hands down the hardest day we have faced, we were given news today that was beyond our worst nightmare!  We were told that Addie has congestive heart failure and the cause for it is still unknown and due to this her heart and lungs are retaining too much fluid!  We were also told that her kidneys are still not functioning properly (only 20%) and the only way to save her was to perform dialysis!  They have tried every other route to remove the fluid and nothing has worked due to her poor kidney function!  The doctors explained to us that dialysis was the only option to remove the extra fluid around Addie's lungs and heart and in order to perform dialysis Addie would need to have a large catheter placed into a vein in her leg.  They also stated that because Addie's heart and lungs were working so hard and her cardiac function was so poor they felt it necessary to intubate her and place her on a ventilator.  This would allow them to control her breathing and take the stress off of her lungs, allow them to rest!  With the sedation and intubation came a great risk, a risk that Reed and I were not prepared for.   The ICU doctor (Dr. Tina) told us that because Addie's heart function was so poor there was over a 50% chance that when they intubated her that she would go into cardiac arrest and die.  She stated that they would do CPR if this occurred but the likelyhood of her heart regaining function would be nearly impossible.  She also informed us that if Addie went into cardiac arrest they could place her on a machine that would support her heart and lungs called ECMO.  However, because Addie is post transplant and has such poor bone marrow function at this time the chances of her coming off ECMO and surviving were near 0%.  She also told us that ECMO would be very hard on Addie and while on that machine she would look much different and have large catheters sticking out of her neck and leg.  The nurses and doctors said that it would be incredibly hard to see her like that and her risk for infection and bleeding would be extremely high.  Dr. Tina told us that she would support us in any decision we made and that there was no wrong decision, it was all ours to make.  

What was happening?! How did this happen and why Lord, why?!  Our precious Addie had a 50% chance to survive through today, and the decision when to start and what to do was ours!  There was really no choice in whether to do the intubation or not, Addie had to have it done to survive and now was safer than a few days from now because her heart would only grow weaker.  We also felt that ECMO was not in Addie's best interest and to have her alive like that would only harm her and cause her suffering.

It was honestly like we were bulldozed over, my heart had never ached so much in my life!  This entire situation was completely unexpected and caught our oncology team completely off guard... We were told in all the patients treated on the protocol Addie follows there were only four documented cases of heart problems!  It wasn't something that we were prepared for because it wasn't something that they saw happen following the regimen she received!  It was honestly like my insides were dying or that if they died they would feel better!  How do you say good-bye to your child when it may be the last time you see them?!  We prayed, prayed and prayed some more and we LOVED on her, held her hands and kissed her as much as she would allow!  We talked with her about what was going to happen and I begged her to fight and I pleaded with God to never let her little heart stop beating!!  We called our families and told them to come ASAP.  It was the longest day... But in some ways we wanted it to last especially if it were her last, then in the next breath we wanted it to be over and to have her past this incredibly large obstacle she was facing!!  

Addie underwent surgery around 4:00 today, we prayed over her and gave her all the love we had.  She hadn't really talked at all up to that point because they had her gently sedated to ease her heart but she would open her eyes and acknowledge we were there!  Just before the surgery was to take place she asked for Grace and Emma to come back again, it melted my heart!!  The love she has for her sisters is so incredible!!  I told Addie that Mommy, Daddy and sissys needed her and that she had to fight!!  I told her that if she were asleep and Jesus came to her that she tell him she was still needed at home, that her family had not gotten enough of her yet, and that He would have to wait... Because Addie doesn't ask, she tells :) 

Today I felt the Holy Spirit in our room, I felt The Lord watching over Addie and I knew that no matter how scared I was and no matter how the fear kept growing that Addie wanted to LIVE, she wasn't ready to say good-bye.  Her strength and will to live is unmatched!  Was I scared and did I doubt?!  Yes and I was completely out of my mind at moments but the calm came, He was there!!  God's will for Addie is great and He has never left our side and He will not forsake us!!  

The doctors told us they would let us know immediately if the tube was in and working or if her heart had stopped and they were performing chest compressions... That was the longest 30 minutes ever, Reed and I just watched the end of the hallway awaiting the doctor or nurse to bring the news!!  Thank you Jesus, Addie triumphed once again...because of you God she is still here with us, ours to love, hold and kiss!  The intubation went perfectly and the catheters were placed without complication!  Our nurse said it was one of the best/smoothest intubations she has witnessed!  Dr. Tina said that Addie's heart welcomed the assistance and though she fought the anesthetic (like she always does) there was no fight after that!! Praise God!! 

The love we felt from our families and friends today was unbelievable and I saw just how truly blessed we are to have such amazing support!! I love you (you know who you are), thank you for being with us today, for sharing in our fear and rejoicing in our triumph!! 

Thank you to everyone who texted, commented and prayed Addie through this time!!  

We are still deep in the woods but with God all things are possible!!  My girl is truly amazing, my hero!!  I love you Addie Bean, thank you for fighting for us... 

Go Team Addie!

"he has performed wonders that cannot be fathomed, miracles that cannot be counted."

Job 5:9

Peaceful even when her body is at war!

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