Life Lately

Life is good... So good!!  It is crazy how the good moments can almost bring as much anxiety as the life changing ones!!  There is a battle going on inside of me at all times... I am constantly fighting off the worry, anxiety and fear!!  It is safe to say that I would be a HOT mess without Jesus... I honestly don't know what I would do if He didn't walk with me, if He wasn't there to boost me up when I felt depleted and to encourage me when I was sad!!  It is truly amazing to know that we are never alone, never forgotten and loved more than we can even fathom... That brings me hope in my darkest moments!!  

I have been struggling a bit more than usual lately with worry... I really think it is because things have been so good!!  It is like I am waiting for everything to once again drop out from beneath me!!  I also think it is because I am home and home is busy!  The hospital is hectic but there is usually downtime, where as being home there is zero downtime... There are always things that I can find that "need" to be done!  This gives me far less time to sit and be with Him... to pray, to read, and to learn.  I really think that is why lately I have been feeling a bit more down... Life sneaks in and pushes Him out!!  I read in my devotional that it is so easy to see Him in your most needy moments, in those life altering times. It is in those "normal" everyday moments that He is often forgotten... And that is so true!!  He is never forgotten with me but He definitely takes the back seat at times to my role as a mother and a wife.  That is consistent with who I am, never taking time for myself!  I view my time with Him as precious time to myself but time that I unfortunately fail to take some days!!  I need to take that time, because time with Him should be my number ONE priorty, that time makes me a better mother and wife, it makes all aspects of me better!!  He shouldn't receive the used up and tired me or get the leftover time when everything else has been done... He should get the fresh, eyes open and ready to rock Mandie, that is what He deserves!!!  I am sorry Jesus.  I am sorry that there are days when You are the last on my list and that I don't take the time to just sit and be with You... please forgive me.  I want so badly to think of you in every moment and to see You in all that I do!!  I am so thankful for this time at Home... This time to be a family, but I pray that it will also be a time to grow in You! 

Where are we at with things... We are knee deep in radiation!  We go every working day to Iowa City for radiation!  Addie has 12 treatments and we just completed her sixth treatment today... Yay to being half done!  They really have been uneventful, it takes about 10 minutes total but because Addie needs to be sedated we are usually there for about two hours!  We leave here around 6:30 AM and we are typically home by lunchtime!  The drive is definitely tiring and Addie and I both do NOT love it, but it is better to be home... Worth the three hour drive to sleep in our own bed (yep, just our bed... I don't know if she will ever sleep without me again, someday maybe :)).  It is crazy how something as major as radiation seems so minor.  It is this huge, scary, cell altering process and it is completely uneventful... You don't even know anything is occurring!  Addie has a few sharpie marks and stickers on her body but otherwise you would have no idea anything is happening!!  Another example of how truly amazing she is... She has underwent now 6 cycles of chemotherapy, 3 surgeries, a stem cell transplant, and 6 cycles of radiation and she is still my Addie... She comes home and wants to play, dance and sing her music!!  Wow, is our God good!!  What this 3 year old has been through is truly remarkable, she has endured what no one should have to and she does it without a second thought!!  Thank you Addie Lynn Brenden for being so brave, so strong and so perfect!!  I can't say it enough how blessed I am to be your Mother!!  I get to hold you and kiss you every single day... I get to rub your tickle spot, tell you stories of dragons and naughty witches, play Candyland, sleep with you, rub your soft bald head, dance with you and listen to your beautiful voice tell me you love me to the heavens...   Wow, am I lucky!!!  

We have more to come but it is unclear at this time what that will entail and if her body will allow it...  As always the future for Miss Addie Bean is uncertain and she is going to have to fight every day of her life, luckily with Him there is no doubt she can do it!!  The future will forever be unclear and I am doing my best to TRUST that what lies ahead is what is right!!  What He has planned for us is perfect...  Great relief and comfort comes in trusting that!!

Prayer requests... Please pray that Addie's heart is healing and will make a full recovery!  Please pray the same for her kidneys!!  She continues to be on medications for both of these things!  No one knows if her heart will be "normal" again but I am praying that it will!!  

Please pray that her body will fully recover, remain cancer free and be able to protect itself for the rest of her LONG healthy life!  

Please pray that the next step of treatment will go smoothly for Addie... That she will tolerate it well and that we won't face the same obstacles we did after transplant!

Please pray for clarity for Reed and I... Pray that He would show us the right choices to make in regards to her medical care!! Pray that those choices would be obvious!  Pray that we would always know what The Lord wants from us as her parents and earthly advocates!  

Please pray that the side effects from all of this horrific treatment are minimal and no long term side effects will cloud this sweet girl's future!!  

And lastly... Pray for safe travels as we drive back and forth to Iowa City!! 

Thank you everyone for your continued support and prayers!!

Go Team Addie!!

"As for God, His way is perfect; the word of The Lord is proven; He is a shield to all who trust in Him."

2 Samuel 22:31

Loving on Grandpa... Wearing his glasses!

Her and Daddy making protein shakes with the new Ninja :)

She still thinks it is summer out... Always asking to go outside and play :) She keeps asking me when it will be warm again!!  

Enjoying a healthy snack :) after radiation!

Fun in the waiting room... We have played a lot of "I spy" in there!

Thanks Liz and Kyle for the NYE stuff... The girls loved it!, such a great idea!! So sweet of you :)

Showing off her big muscles!

Some much needed family time... Mommy and Daddy made a last minute decision to go for family dinner... Making sure every Brenden family member was healthy of course and her mask was on!   The benefits greatly out weighed the risks!! 

First shower... This girl was a shower addict before those tubes were placed!!  This was her first shower in 7 months and she LOVED it... She has showered every day since!   She has finely made peace with cling wrap, who knew it had this use too?!

Just beautiful :)

So Much to be Thankful for

We had some pretty amazing people make this holiday so special!!!  Addie coming home was the best possible gift ever... A gift straight from Him!!  We had some amazing people make our best gift ever even better... As I have said in the past, there is no possible way that I could thank everyone enough for their incredible generosity to our family!  It makes me want to be such a better person... I see people go above and beyond for us and I so badly want to return those favors!! I wish there was someway I could show my thankfulness more... My heart overflows again and again!!  

Thank you to everyone who sent gifts, letters, cards, money, gift cards, and food to the hospital and to our home!!!  Thank you to everyone for the inspiring comments and love!! 

Thank you to the Regis Middle School 8th graders for the special gifts... I left the room for five minutes to get food and I came back to Addie covered in bows and opening a huge box of presents!!  She was in heaven!! 

Another thank you to Oelwein's FFA... They brought around gifts to the children in the hospital, boxes of them!  What a sweet group of kids, thank you so much!!!

A special thank you to the Children's Cancer Connection for helping make our Christmas that much more special... The gifts and gift cards were just perfect for our family!!  Thank you to the families who sponsored us... I felt like you knew our family personally by how perfect the gifts we received were!!  

A huge thank you to the Black Hawk County Sherrif's Department for sponsoring our family this Christmas and getting all of us such amazing gifts!!  What an amazing site walking into my house and seeing our tree overflowing with gifts from the amazing people who keep our community safe... We should be the ones getting you all gifts! So special!!  The girls loved everything they received and the smiles that morning and giggles were unforgettable!!  

A very special thank you to the wonderful people here at the Hospital who nursed my baby back to health... Thank you for going above and beyond and for loving our Addie Bean!!  You truly help make us feel at home, and we always feel so taken care of by you!!  

Jessica (Jekika) we love you so much... I always feel right at home when you are our nurse!!  You make that home sick feeling go right away!! Thanks for loving our baby and taking such good care of her and us!!  You are a wonderful nurse and we feel so blessed to call you ours!!

Naughty Veronica... We love you and don't know what we would do without you!! The hospital wouldn't be the same without our Naughty Veronica!  You became a part of this crazy family the second you found Addie's green bike, you didn't know what you were getting yourself into :)

Erika... Our beloved night nurse!!  Thank you for bringing such fun to the long nights in the hospital!!  You are a wonderful nurse... Thanks for taking such good care of our Addie Bean!

Dr. Kate... Our ICU resident!!  We will forever remember you and the ICU team, you saved our sweetheart's life!!  There will never be words to tell you how much we appreciated all of you and what you did!!  Dr. Kate you will do great things, the love and passion you have for medicine is so amazing... Many lives will be saved by you!!  

Kayla, our physical therapist!  You were so persistent and so sweet... Always patient and never rushed or irritated by Addie's demanding ways!!  Thank you for helping our girl walk again!

Dr. Potter... No picture yet :). You are number one in my book!!  I would be having an anxious moment and you would enter the room and make it all go away!!  Thank you for your calming presence and your caring spirit!!  We feel truly blessed to have had you as our surgeon... It was you who removed that awful tumor that was killing our baby!!  You are a hero in our book and the best surgeon around!!  

Mary (Murray).. I love you Mary!!  We aren't done with you yet :)  There will be many pictures of this wonderful woman to come!!  Without you I don't believe I could make it through this whole process!!  It was you who we wanted during our toughest moments, you bring such peace to our hearts and I feel that you truly love our little girl!!  It was you who said, just look at her... She will make it through, and praise Jesus she did and she will continue to!  You are such an amazing woman!  I honestly don't know what I would do if I didn't have you to go through this process with!!  I missed your calming and caring presence during transplant and I am anxious to get back underneath your umbrella of expertise!!  Thank you for continuing to check in on us and for always making yourself available... You are one special lady and we love you!!

We have been touched by so many wonderful doctors, nurse practitioners, nurses and other medical professionals during our stays at the U, I wish I could have a picture of all of them!!  We can't thank you all enough... You will forever hold a special place in our hearts!! 

We are truly blessed to be surrounded by such amazing people both at home and at the hospital!!  It was a remarkable Christmas, one that we will never forget!!  Thank you from the bottom of our hearts!!

Go Team Addie... This team inspires me to be the best Mom I can be.  You bring me hope when I feel down and you show me day in and day out that this world is full of remarkable people!!  

"I thank God every time I remember you. In all my prayers for all of you, I always pray with joy."

Philippians 1:3-4

Catching up...

I feel like so much has happened, I don't believe I could possibly update you all on every detail... I will just give you the good stuff!!  I can't say there has actually been a single bad moment... Life has been so good at home!!  

I will just start at what led to us going home...

They sorta sprung the whole going home thing on us last Monday... I didn't want to say anything for fear of jinxing it (you know me and my superstitious ways)!!  I was shocked that it was even a possibility!!  Addie was doing remarkably well... Tolerating her TP feeds and walking better, everything was definitely going in the right direction!! Praise Jesus!!  

That Tuesday Addie had to have her prep for radiation... She had a CT and MRI for planning and diagnostics.  She did great and didn't even have to be sedated for her CT.  She woke up beautifully from anesthesia and that day did the best I have seen her do!!  She was off of her feeds basically that entire day due to anesthesia and getting blood products!  She didn't complain once of a tummy ache or vomit!!  That night they resumed her feedings and increased them to her goal amount (which she had yet to tolerate)!  Over the night she did great, likely because she was exhausted from the day... No nap!  When she woke up that Wednesday morning (discharge day) the tummy aches were back with a vengeance.  Right away she was complaining of stomach pain and began vomiting, and her vomit was tinged with blood, nothing crazy but enough to notice.  The doctors came in about an hour later to take a listen and basically just tell us good-bye and what does that little stinker do?!  Vomits up bright red blood, and kind of a lot.  She was screaming, yelling and crying and just looked absolutely miserable!  Needless to say, the doctors were not thrilled and were definitely questioning whether or not home was still a good option!!  They looked at me with worry and asked if I was comfortable with all of this and still taking her home?!  Surprisingly I felt no worry... Not even a smidge!! As a matter of fact it was probably the calmest I had felt... Oddly!!  I have watched Addie vomit blood, poop gallons of blood, witnessed her struggling to breathe and on a ventilator twice so this little episode was nothing!!  I gave them my take on why it was occurring and why I wasn't worried... One of the many things I have learned through this whole process is that doctors always skip to the worst case scenario.  I don't know if they avoid the obvious, don't believe the obvious could be true or just want to always be prepared for the worse (probably the latter)?!  Well so far, Addie despite being rare in her side effects, has always had OBVIOUS reasons for why things were happening... The doctors just didn't always want to acknowledge that could be all it was!  Well in my medically uneducated mind (just the Mom knowing her daughter), I knew the reason Addie was vomiting blood was because her feeds had been increased fairly quickly and at a level she had never been at comfortably!  Watching her the day before laugh, play and have the best day ever was confirmation for me that the sole reason Addie still felt yucky was because of her feeds... Most kids don't have TP/NG (feeding) tubes because they won't tolerate them or because their parents didn't force the issue... most kids go home on IV nutrition and not formula feeds.  I felt that Addie was definitely one step ahead in that department because her stomach was further than most but because of this, she was still struggling.  It was either struggle threw it now or later... Her stomach had to wake up at some point!! 

Praise Jesus for that TP tube... It really has been amazing for Addie because it feeds the intestine and bypasses the stomach all together.  So even if Addie throws up, her food and medicines stay where they are suppose to!!  Really amazing... It still causes discomfort just like a NG would but amazing in that it wakes up the GI and forces things to stay where they should!!  A bonus of being in the ICU on a ventilator... TP placed!  The other great thing, it doesn't have to be changed every 30 days like an NG... Removing and placing them is absolute torture, which is why most kids don't tolerate them!!  Sorry, probably way more than any of you cared to know about feeding tubes!!  I just am so thankful that Addie's has been working out!!  

Back to Wednesday... The doctors said they would see how Addie did for the morning and pending no more bloody vomit we could still go home!!  Her feeds were lowered back to where we knew she tolerated them!  She was still a bit rocky for the next hour or two and struggled with an upset stomach the rest of the day... But luckily didn't have any more major bloody episodes!  

After the doctors left that morning, Addie and I prayed, we prayed that Jesus would make it clear as to what we should do... Either stay in the hospital to be safe or go home!!  Obviously, we wanted so badly to be home but what we cared about more was what was best and safest for Addie!  Like I said before, I just felt a calm... A calm that was oddly obvious!!  There wasn't a part of me that was nervous to go home... My only anxiety was my lack of nervousness because that wasn't like me!!  This was a huge deal... Going home  for the first time in 50 days after all Addie went through is sorta MAJOR and with a whole new list of home cares and equipment!! 

Obviously, the doctors (praise Jesus) let us take her home!  She was unhooked from her tower and feeds for the first time in 50 days... I don't know if she even knew what to do with herself!  We spun in circles and sang our usual song... freedom!!!  Can I just stop and get a big Hallelujah... I continue to be in aww at where we are today, so amazing!!  My Addie Bean... True miracle!!  But seriously leave it to her to vomit up blood on discharge day... Just to make it exciting!! 

It really is surreal.  The whole trip home Reed and I just kept saying, "can you believe this?!"  I still can't believe it!!  

Our first night home was busy... Busy getting reaculmated to being home and being a mother of THREE and on Christmas Eve, which is always busy to those parents who have to help Santa!! :) Life with three healthy kids is busy enough... Add on a schedule of medicines, a TP tube, nausea, and a double lumen hickman catheter to that and you basically just upped yourself to a family of 7 :).  It is busyiness that I am so overjoyed to be doing again... Caring for my family ALL together and on Christmas Eve!!  We were home just in the knick of time to celebrate this wonderful season and our Lord and Savior Jesus Christ!!  

50 days... Wow!  My girl is home... God is so good, so GOOD!!

Go Team Addie!! 

Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you.  

But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed. 

 If you are insulted because of the name of Christ, you are blessed, for the Spirit of glory and of God rests on you.  

If you suffer, it should not be as a murderer or thief or any other kind of criminal, or even as a meddler.

 However, if you suffer as a Christian, do not be ashamed, but praise God that you bear that name

1 Peter 4:12-16

Unbelievable

Just a short post for some really big news... We are home!!  I still can't believe it and I haven't even had a second to sit and write.  I am sorry for that!!  

We came home yesterday... I will fill you in on all the details at some point :). I will shout it from the roof tops...God is so good... True Christmas miracle, Praise Jesus!! Addie is doing so good... Better than I would have ever imagined!!! There will be more on that to come!!

Thank you everyone for your prayers... Him and you are the reason for all of this!!  Merry Merry Christmas Team Addie!! We love you!!  I will say it again... Best team in town!!  But hey, when you have Jesus as the team captain your bound to be the best!!! 

Happy birthday to Jesus... You are the reason for this amazing season!! 

Go Team Addie!! 

I will update soon!  Pictures galores, the works!!

"We can't always see where the road leads, but God promises there's something better up ahead.  We just have to trust Him."

Psalm 56:3

Day +40

"As you persevere along the path I have prepared for you, depending on My strength to sustain you, expect to see miracles...and you will.  Miracles are not always visible to the naked eye but those that live by faith, can see them clearly.  Living by faith, rather than sight, enables you to see My Glory." Jesus Calling by Sarah Young

Wow, does that speak volumes... God does make miracles happen and I believe I have one lying next to me right now!!  Addie Lynn Brenden you are a gift from God, my miraculous little angel!!  Praise Jesus for her life and for allowing me to be her mother!!

Living by faith is such a better way to live and who doesn't want to see His Glory... Fear can not bog down a life lived by faith!!  That being said, why is it such a struggle to live faithfully?!  Why is it that the moment that I allow my mind to rest it immediately sneaks back into it's old habit of worrying, feelings of inadequacy and the need for control!!  I came into this weekend just feeling like my tank was emptying...  Wondering how much longer could I really keep pushing through this, how much longer could I keep it together and how much longer would I have to watch Addie fight this battle?!  The thought of tomorrow, next week, the months and years to come only make me worry and leave me feeling exhausted... The moments I allow my mind to wonder are the times that fear and selfishness come rushing in.  This isn't about Me, I am not going through this, Addie is!!  How dare I get tired?!  She is enduring so much... I am only here to make her days brighter :)  Moments like I described are when I lose sight of Him and begin directing my eyes inwards!!!  I realize that I have no power in any of this other than Him, and what a MIGHTY power that is!!  Thank God for this Power, for Jesus!!  I will forever actively pursue a life filled with faith and hope.  

I have recently learned that God wants us to have dreams and He wants us to dream big!!  How exciting is it to dream?!  When I think of what is to come, rather than worry about what could happen I dream of what is going to happen!!  Whew... Is that a better outlook!!  I think it is pretty clear what this Momma's dream is... A big dream for a BIG God, who is capable of miraculous things!!  Can I get a hallelujah on that :)

My tank is currently full once again... Praise God!!  This weekend was busy.  Our family of five was packed in this little lunch box and that can be quite intense but WOW does it feel good to be a family of five... All my girls together, playing and enjoying eachother (most of the time)!!  Addie continues to improve and since we arrived down her this last Monday we have not had any set backs... Yay!! (Knock on wood) She hasn't needed any blood products in almost a week... Wow, is that a miracle in itself!!  She went from needing platelets twice a day to maintaining for almost a week!!  Praise Jesus!  She has not had any fevers for over a week and is currently not on any antibiotics.  She remains on a diuretic and is actually being transitioned to the oral form tomorrow rather than IV, which is a big step in the right direction... Praying that goes well, obviously a little anxious in that!  Fluid overload is the main reason for all of the problems Addie experienced, prayers to never again witness that!!  The doctors and nurses are keeping a close eye on her weight and the second this baby gets over 15 kg I will be on them :).  She is coming off of IV nutrition which is also HUGE and starting tomorrow Addie will only be getting fed through her TP tube.  She can eat and drink anything she wants but unfortunately has no desire.  Her nausea has improved 100 fold... she still has a tummy ache now and again but it is night and day better than before!!  She is regaining her strength and can even stand on her own for short periods of time.  She can walk a few steps on her own, otherwise she can walk well holding just one of my hands... Earlier this week I was supporting most of her weight!  It really is a miracle where we are today!!  I know I keep saying that but it truly is remarkable that Addie is Addie!!  Just a few weeks ago she was struggling to breath and here she is back to her rowdy self, making Momma work!!  We have played countless games of Candyland, bathtime is her favorite time, and I think between Reed, Grandpa, and I we have walked 1000 circles around the bone marrow loop.  She had a tea party with big sister, played school and we even played babysitter...life is GOOD!!  

It sounds like we will for sure be here for Christmas.  We still have a few things that need to happen before Addie is ready to be home and honestly, I don't want to take any chances on getting home and then landing ourselves back in the PICU... I really just don't trust this little cookie!!  I am doing my best to pray that away and am trying my hardest to just enjoy these great moments!!  Christmas is my favorite time of the year.  I can't say I ever saw us spending a Christmas in the hospital, but who does?!  I also didn't ever dream that Emma's first Christmas would be in a hospital room, but here we are and I can guarantee we will make the most of it!!  Christmas is number one a time to give thanks to God for our Lord and Savior, Jesus Christ, and secondly about being a family and rejoicing in that!!  Family time this year has a whole new meaning and for us to be together will make this the merriest Christmas I could ever imagine!!  

Go Team Addie!

"And he shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace"

Isaiah 9:6

"For unto you is born this day in the city of David a Saviour, which is Christ The Lord."

Luke 2:11

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!