Team Addie Wristbands

Hi Everyone! This is David Brenden, Addie's Uncle - I am hijacking Addie's blog to thank everyone who has supported Addie and the Brenden Family through the purchase of Team Addie wristbands! Thank you to Brian & Sam Wingert, Jared & Lindsay Nauholz for all the time you have spent ordering, selling & delivering wristbands! Thank you to everyone else who has helped sell wristbands for Team Addie!

We still have thick wristbands left but are currently out of the thin ones. We will be placing another order of thin wristbands so we should have them in the next couple of weeks. If you donated money for wristbands and have not received them, please send me an email at davidbrenden@gmail.com. If you would like to order Team Addie wristbands, you can do so here: Order Team Addie Wristbands. Thanks again for the prayers, love and support for Addie and the Brenden Family!

Wow

I am so overwhelmed with thankfulness.. Addie is doing remarkably well!!!  She is beyond better today than I could ever have imagined!!  I have not witnessed this Addie for 40 days... My girl is back!!  I will be honest, a part of me is definitely still waiting for the other shoe to drop but WOW is she doing good!!  If she keeps this up until Thursday, I may begin to trust her again :) 

We left the PICU late last night.  We could have been on 3J sooner but I refused to take room 88 back... Even though it is the best room in the hospital, the penthouse, I just felt like it was bad luck.  It made my stomach hurt to think of going back there... I may be slightly superstitious but two trips to the PICU that both resulted in Addie being intubated are definitely grounds for bad vibes!!  We are now in room 89 and I am feeling really good about it!!  There isn't a bad room back here and compared to the shoebox we were in up in the PICU this is a mansion!  :) I was up until 12:00 making it feel like home... Addie finally yelled at me to lay down!! She helped me finish decorating this morning and Christmas has arrived here in room 89!! 

We have had a very busy day.  A wonderfully busy day filled with two walks (Addie hasn't walked for over 35 days, our faves hid her Rosie elf and she had to find it), playing games in the playroom, a visit from Aunt Yetti, a nice nap, Addie manicures, watching Elf, music and physical therapy, playing hidden picture books, a bath and a visit from Auntie Arin!!  I don't know if you could ask for a better day here on 3JCP!  We came back to our favorite nurse and nursing assistant... They always help to make it feel like home!!  Only thing that could have made this day better was sharing it with Daddy, Gracie and Emma.

I can't praise God enough... I am overwhelmed at the miracle I have lying next to me right now!!  Addie not only was intubated once, but twice, and here she lies holding my hand and kissing me goodnight!  Thank you Jesus for this day... This miraculous day!!  She is so amazing, I missed her so much!!! Thank you for bringing her back to me!!  I am going to enjoy every minute of this time with her... And pray that she will only continue to get better!!!  I even got to experience an Addie tantrum last night... Whew, can my girl throw a fit!!  I will take tantrums, they just mean my girl is back!!  I am not sure what the week will bring... I don't even allow myself to think about tomorrow, let alone next week!  But like I said before, I need to see a few more days like this before I will trust this little turkey... And even then it may be rough!!  What I can trust our His promises and He has got this!!  I am incredibly hopeful for the future and am praying that home is just around the corner!  I was just praying and it is almost eery how at peace I feel with Addie's cancer... Funny how life threatening organ damage can make stage 4 Neuroblastoma look like a walk in the park!!  We still have a ways to go in Addie's treatment and I pray that she will continue to stay on protocol in order to have the best odds of beating this!!  Please Jesus let there be no more life threatening situations for the remainder of Addie's protocol.  Please allow time for her body to rest and heal but let no cancer grow!!  I pray that every cancer cell has been killed and no opportunity for recurrence is possible!  Please Jesus shield her from the remaining treatments, kill the cancer but leave my Addie Bean unharmed!!  I would say she has been through enough... She has proved herself time and again that she won't be defeated!!  Praise Jesus!!

Thank you again to the amazing doctors and nurses in the PICU!! I felt so taken care of while we are up there... I felt they truly cared for both Addie and our family!!  You saved my girl's life and for that I am eternally grateful!  Please don't take this the wrong way, but I hope to not come visit for quite sometime... Not until antibody therapy that is!

Lastly, a special thank you to some incredibly generous supporters of Team Addie!  I want to thank Ryan Downes, Ryan Sullivan and all those at NLXF for the generous donation to Team Addie and for the kind messages and love that were shown to our girl!!  I was incredibly touched and overwhelmed at the amazing support we received from all of you... Wow!!  Those shirts are amazing and seeing that sweaty sea of blue was so touching!!  We are truly blessed to have people like you on our team!!  Addie will know of you and the love and support you provided to her through her battle!!  My heart overflows... Thank you!!!

Go Team Addie!  

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

Hebrews 11:1

Day +30

Wow, what a good day!!! Hallelujah :). I can't even describe how good it has been... I am smiling from ear to ear as I write this because for the first time today I saw my girl feel GOOD!!!  So amazing!! I even got a kiss on the lips... I am in heaven!!!  Praise God!!! 

Addie was taken off of the ventilator this morning without any complications!!  She was in a great mood... Talking, playing with her sisters and being Addie :). How incredible it was to hear that sweet voice and see that one of a kind personality!!  I actually got to hear that Momma, momma, momma stutter that she does... Melts my heart!!!

They have been weaning her oxygen throughout the day and she has been tolerating it very well!  Her chest X-ray improved some this morning and surprisingly her platelets have maintained... First day in over 3 weeks Addie has not required platelets!  Praise Jesus... Praying that her numbers will look even better tomorrow!!  So far all the cultures and tests from the bronchoscopy have been negative.  We are still waiting on the bacterial cultures!!  In some ways it would be nice to have a diagnosis so we could treat whatever is causing this, only then could we know it would be definitely be gone.  I just don't think that is going to happen... I really think Addie prefers to keep us guessing!!  I am not convinced we will ever have an explanation for any of this and frankly, I really don't care!!  What does it matter if in the end my baby girl is healed and all is as it should be... It will only be that much more miraculous and let's be honest, she is MIRACULOUS!! It appears that she is doing better?!  We never really know with her as she likes to knock our socks off and then make miraculous recoveries, little stinker... But today she is better, FAR better!!

Today I really heard the Lord saying, "Mandie, TRUST me!! Trust in My time; she will heal." His time being the key... I got a real sense of clarity about that tonight after reading my devotional!!  My devotional (Jesus Calling, Enjoying Peace in His Presence by Sarah Young) said that hurry is not in His nature and that often the longer we wait the more our enjoyment intensifies!!  I have learned that waiting and watching is not something the medical profession is overly comfortable with.  Hurry and treat is more their comfort zone!!  I really believe The Lord is telling us to just breathe, step back and give Addie time.  Her body needs rest without being pushed or driven!!  That amount of time is unclear and completely out of our control!  She will heal in His time... 

Thank you Jesus for your presence and for your peace, once again you comfort my anxiety and hug my heart!!  Thank you for giving us this day... this beautiful day with Addie feeling good!!  She only had one episode of nausea, truly a miracle!!  She was taken off of the ventilator and the next hour she was blowing bubbles with her sisters, sitting in her princess chair and coloring... Amazing is an understatement!! 

With all of this being said, I still don't trust my little GUSTO girl!  Thankfully what I do trust is far more powerful!! Addie may still have a few tricks up her sleeve... Maybe she is paying me back for something?!  She did hate that NG tube I made her get :) joking!!  

Addie, sugar cakes... Mommy has had enough of these ups and downs, I am ready for you to come home!!  

Go Team Addie!!  Prayers for continued improvement and her feeling good... total HEALING!!  

"Let your hope make you glad.  Be patient in time of trouble and never stop praying."

Romans 12:12

"Have patience, God isn't finished yet."

Philippians 1:6

We went from this...

To this... I have to say it again, God is so good!!!

The tiger twins... Addie sitting in her princess chair showing Sissy how to breathe into the spirometer!! 

Our Christmas tree... Decorations made by Gracie and Grandma!! Absolutely perfect!!! 

Day +29

Today was another trying day, filled with more I don't knows?! And uncertainties... The story of our life this past month.  

Why did this happen and why is it continuing to happen?!  What caused her heart to not function properly and can it make a full recovery?!  These are the questions being asked for which there are no answers. Some clarity would be awesome.  I know the doctors want to find a cause and solution so badly... I think it is beyond their realm of thinking that this could just appear without cause and disappear without reason.  I don't think the doctors feel it is impossible, I just don't think they believe it will happen... But we know that miracles do happen and Addie has got this :).  I will continue to believe my theory until proven otherwise and I will continue to believe with a 100% certainty that Addie will make a full recovery... That is what my Momma's instinct is telling me!  I still feel that "ulcer" nagging my stomach here and there throughout the day, that chronic uneasy feeling in the pit of my stomach... I don't know when that will go away?!   I wish I could describe it better, anyone who has gone through something similiar to this knows exactly the feeling I am speaking of.  I should name it... I just call it my ulcer and continually pray it away!!  I really feel that the cause of this will not be clear but pray that the resolution is great.  That Addie will be HEALED and free from all of it... heart failure (diastlic dysfunction), respiratory distress, kidney damage and CANCER!!  In Jesus name I pray!!!! 

My devotional tonight was unbelievable... I can't wait to read it each night because I know His words will give my heart exactly what it is looking for!!!  It is incredible how He always finds a way to center me, to put everything in its place and to give me peace.  He continually  reminds me that it isn't my job to figure this out and that it isn't in my control!!!  He always lets me know that He is here and that it is going to be OK, she is going to be OK... Better than ok!!  My only job is to love her and trust Him, He will take care of the rest!!  Thank you Jesus!  

I know it is hard to read but I had to share... Don't feel obligated to read it and sorry for the poor picture.  For those that take the time to read it, I pray it gives you the comfort it has given me!  

On a high note... This morning before Addie had to undergo her bronchoscopy she was feeling and acting better than we have seen her in a long time!!  We enjoyed her sweet voice and precious smile!!  Her breathing was better than it had been and she just appeared to be feeling better!

Her bronchoscopy and GI evaluation went well.  She did come back from the OR intubated because they were worried that due to the fluid that was injected into her lungs for the bronchoscopy she could have increased respiratory distress.   They felt it safest to leave Addie intubated for the night!  The plan is to extubate her first thing tomorrow morning!  Prayers for this and that all will go well!! Prayers that we will never again have to see our sweet girl on a ventilator!! As scary as the ventilator is, it is so nice to see Addie rest peacefully tonight!  Her body worked so hard the past two days to breathe and I think a little break will hopefully only make it better for her!!  Even ventilated Addie still managed to help me decorate the room, pointing to where she wanted things hung up!  She was also able to get and give a few Frozen tattoos :)!  

Please Jesus make Addie well again... Please don't ever let us be in this place again, let her continue to climb that hill to recovery!!  

Go Team Addie!

From a card we opened today (thank you for the sweet and amazingly thoughtful gift)...

Every day God thinks of you.

Psalm 68:19

Every hour God looks after you.

2 Thessalonians 3:3

Every minute God cares for you.

1 Peter 5:7

Because every second He loves you.

Jeremiah 31:3

Day +28

One minute you are nearing the edge of the woods and the next you find yourself in the heart of it!  Seriously, when is this roller coaster going to end?!  It gets harder and harder to witness Addie struggling on this road to recovery! Praise Jesus for my little fighter and her strong will!!  Watching Addie lie here working to breathe is a reminder of how tough she is... She just pushes through it, refusing to let anything overtake her!!  It makes my heart hurt that I can't help her, physically help her!!  I feel at times so helpless... We as Mothers are designed to protect our children!!  We are supposed to comfort them when they are sick and make everything ALL better!!  The moment that child is born you will do anything for it, sacrifice everything... And here I sit in a hospital room watching my baby girl struggle and there is nothing I can physically do to help her!!  Talk about feeling helpless... But then the Lord steps in and reminds me that I am not alone and I am far from defenseless, with Him all things are possible!!!  What I have the power to do is pray... Pray that He will heal her, comfort her and continue to breathe strength into her little body!!  

When I am weak, He is strong... Thank heavens for this!!  Please Jesus get Addie past this, get her HOME with us... Allow me to be her mother, to raise her and to LOVE her endlessly!! 

Lots of prayers for tonite and into tomorrow... Prayers that her lung function will improve and the fluid in her chest to vanish!!  Prayers that her body will once again be able to maintain itself and regulate the fluid it requires!!  Tomorrow if Addie's lung function has not improved she will have to have a bronchoscopy... This procedure in itself is pretty minimal but because Addie is not a "average" patient everything comes with a heightened risk!!  It will take place in the OR and she will likely have to be intubated once again!  They will get a sample of the fluid in her lungs and determine of there is an infectious component causing all of this!  Everyone is searching for answers and I am just praying it will all go away... That once again He will make her well!!  Please Jesus give these doctors your wisdom, please don't allow there to be anything missed.  Please give us clarity as to what is causing this and what needs to happen to make her better!!  Thank you for always listening Lord Jesus and for the peace you place in my heart!! 

Thank you all for walking along this road with us... For your continual prayers!!  Your loving words fill my heart with hope and love!!! I will say it again... Hands down, best team in town!!  Go Team Addie!

"Do not fear, for I am with you; do not be afraid, for I am your God.  I will strengthen you; I will help you; I will hold on to you with my righteous right hand."

Isaiah 41:10

"I have heard your prayer; I have seen your tears.  Look, I will heal you."

2 Kings 20:5

Day +27

Well team we find ourselves back in the PICU room #5!  The place we have called home for the past 21 days!  Our time on 3J was short lived this go around!  Fortunately, our move here was not emergent but merely precautionary!  After a very good morning of seeing Addie awake, having our favorite nurse and having fun in the bath, things started heading a bit south!  Around 11:30 this morning, Addie's oxygen saturation levels started decreasing and her respiratory rate began increasing!  She started requiring oxygen to keep her SATs above 90 and it was pretty obvious that she was working harder to breath.  I immediately became concerned because the symptoms were similiar to what sent us to the PICU the first time!  The oncology team also showed immediate concern and got the right people involved  stat!  Our doctors ordered an eccocardiogram, a chest x-ray and blood tests to check for multiple infectious processes. In addition to the sudden respiratory distress, Addie also started running a fever last night.  She almost made it 48 hours fever free!  It remains unclear as to why she continues to run fevers and it is a major concern for the oncology team!  They have thrown around the idea of needing to do a CT scan to see if they can determine a source of infection...  They refer to it as a fishing expedition.  Doesn't that sound reassuring?! Not!!! I don't love to fish!!

The chest x-ray today showed that Addie once again had fluid in/around her lungs.  This explained the sudden difficulty in breathing.  It is questionable at this point if she is retaining fluid or if there is a possible lung infection of some kind causing the fluid?!  The doctors so badly want a reason for all of this so they can do something about it, or at least have an explanation!!  I just continue to pray that no infections are present and that this too will go away as quickly as it came!!  

Great news came with Addie's eccocardiogram, it looked good!! Praise Jesus!!!  Mommy's tummy was in knots awaiting the cardiology fellow to share the results!  As of right now, Addie's heart is functioning as it should... Hallelujah!!  Another positive that deserves praise is Addie's kidneys are functioning well and she is responding nicely to diuretics!  I would say at this point we are in a better place than where we were the first time we found ourselves in the PICU!!  

Thank you Jesus for the PICU... We got up here and a sudden calm came over me!!  I am comforted knowing that Addie is being watched closely by so many!!! 

The plan right now is to give Addie diuretics through the night and pull off as much fluid as possible.  A new X-ray will be taken tomorrow morning.  If the x-ray remains suspicious the doctors will likely do a bronchoscopy to check Addie's lungs for a viral or bacterial infection.  

Reed and I are definitely on red alert and I definitely feel like we are overdue for some good news... News that will answer our questions and give us peace for Addie's future!!  I know Addie will be victorious in the end... I feel that, He has reassured me of this but the road to get there is still pretty cloudy, that is the area in which I pray for clarity!!  I just continue to pray that He would ease our anxieties and in those stressful moments that He would give us a gentle reminder to look up and breathe. 

Addie's body remains extremely reactive to the slightest changes or fluid shifts.  She can swing in a positive or negative direction at any given moment!  Addie needed another platelet and blood transfusion today, her hemoglobin (red blood cells) had a large drop from yesterday... I am beyond ready for her bone marrow to recover!  I continue to pray for total healing for my sweet girl... Prayers for her to feel better and for her body to be able to once again self regulate!!  She is one miraculous little babe and Jesus has shown that He is fighting this battle right along side of her... He isn't going to let anything get in her way of beating this!!  She is definitely keeping us on our toes and me on my knees in prayer!!  That girl is always giving us a run for our money... She couldn't do anything half way!  I am beyond ready for this to be done and for Addie to feel better... I so badly wish I could just make her feel good again, but amazingly I don't hear her complaining... Not ever!  That is our girl :).

Prayers Team Addie, we need them!! Lets get our girl home!

Day +25

Today is a GREAT day... Addie moved back down to 3 JCP!!! Rejoice and give praise to Jesus!!!  

We will definitely miss the wonderful doctors and nurses in the PICU... They took such wonderful care of all of us, I really can't say enough good things about their team!!  We were in such great hands, thank you Jesus for the wonderful care we received!!!  Prayers for all the patients and families that remain in the PICU... May The Lord heal and spread His strength, peace and comfort to all!!! 

God is so good. Addie is doing much better... Her organs continue to heal and grow stronger each day!!  Her kidneys and liver are stable.  We should have another eccocardiogram in the near future to recheck her heart but as far as the doctors are concerned her heart is doing great!!  All of her organs are doing better and the doctors appear to be very pleased.  Her blood pressure is high and she is on a couple of BP medicines.  This is likely do to her kidney function and her body getting reaculmated to kidneys that work but it is alarming and we would love to see that go back to normal!  

I have learned that doctors in general are all fairly pessimistic (they say realistic) and rarely give very much reassurance but as far as I can tell by my constant prying and questioning Addie is doing great.  She is definitely doing better than any of our doctors dreamed she would be, especially considering how bad she was!!  I think Addie has shocked the socks off of most of the doctors in more than one way... She definitely made believers out of those that weren't already!!  That is what life is all about... Bringing people to Team Jesus and I think Addie is doing a pretty good job at recruiting!! :) 

We are back in the big room... It is even more amazing after being in that shoe box for 21 days!!  I am hoping to put up a Christmas Tree and bring some Christmas cheer to my little sweetheart!  Addie continues to feel really cruddy and I am praying that this will just disappear as everything else has... I really want more than anything for her to just feel better!! Please pray that she would begin to feel good!!  Please continue to pray that her organs would make a full recovery and lastly that she have a long cancer free life!!  

We will likely start radiation next week, more on that later!!  I have to get back into that Momcologist role... I had a slight vacation from Neuroblastoma!!  Ha, a vacation full of life threatening events!! Praying hard that was our first and last experience with life threatening events!!! 

I pray that God continues to work miracles in my sweet child's life and that glory will come to Him in her survival and magnificent defeat of this awful cancer!!!  Addie can do all things through Christ who gives her strength... My version of Philippians 4:13. 

Go Team Addie