Christmas Eve

Last year on Christmas Eve, we came home from a very long, stressful, and tortuous stem cell transplant that almost took our Addie Bean's life.  Our God is good and faithful and He saw us through those rough months of November and December.  God gave us a Christmas miracle... our girl, alive, healing and home for Christmas!!!  Addie came home with a feeding tube, a backpack full of nutrition and medicine, and a walker.  She struggled to stand and couldn't walk without assistance.  I can still remember that morning on rounds Addie throwing up blood right in front of all of the doctors... But that is Addie's style :). She likes to keep us on our toes!  Thankfully the doctors trusted us to bring her home and Praise God Addie thrived once she was home.  Today she continues to heal, grow and be happy :).  

My prayers continue everyday and the worry will stay with me forever and ever, but thankfully we have a faithful God that walks with us, every single moment!  As long as I keep my eyes directed where they should be, (on Him) my days are filled with joy and my heart overflows with gratitude!!!  My eyes sure can wander... But that smile and spirit that Addie possesses, always brings me back!!!! She is so perfect!  

Church last week talked about glory, and as I sat listening and learning all I could think of was Addie and her precious face.. That little face, those big cheeks and that sweet smile is a reminder of God's glory... Of his infinite goodness!!!!! She is here because of Him and her face reminds me daily that I should rejoice and be glad in every moment because each of those moments are precious!  

Tis the season to express our gratitude to our Heavenly Father, to love one another and to be glad in the life that He has given us to live!!! Praise God for His son that reigns in my heart and continually brings me peace and joy!  

Happy birthday Jesus!!!  

I pray all of you have the merriest of Christmases!  Here we go 2016... Lets make it a good one!!

Much love Team Addie!

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. 

Romans 15:13

12/24/2014

12/24/2015

Remember the whole keeping us on our toes thing?!  Well, staying true to form, Addie decided to break her leg last Monday!  It is safe to say college soccer may not be in her future :). It is also safe to say that she got her mother'a athletic ability, haha!!  Addie missed a kick in the basement, fell and spiral fractured her left tibia!  

She was sitting on my lap in the ER and she said to me, "mom, why is your heart beating so fast?!"  My response was, "Addie Lynn Brenden you are going to give me a heart attack someday!"  It took me days to recover from that incidence and I am still working on convincing myself it is just a broken leg, normal kids break bones!!!  The first few days were very rough for Addie as well :) but she is doing quite well now!  She can not walk for 4-6 weeks.  She is currently in a boot and her one week follow up showed that her bone is healing!  The smell coming from that boot is quite horrendous :) but she looks awful cute in it!  The high heels Santa got her for Christmas are going to have to wait a few weeks!! 

She managed to still make it to her preschool program and melted my heart singing on that stage! 

Scans

This is the face of a girl with CLEAR scans baby!!!!!  Praise God!!  We are so happy, exhausted but ecstatic :). We have to wait a few days for her bone marrow but praying it will be good as well!!  Thank you everyone for your prayers and your encouraging comments... We love you!  Thank you Jesus for this day and this precious little girl!!!  This is the start of a lifetime of CLEAR SCANS... Remember pray big Team Addie!!  

Best. Day. Ever. God is good!!! 

Psalm 46:5

Here we go...

Today marks the last official day of Addie's cancer treatment.  She will finish her Retinoic Acid today and that is it... no more drugs, therapies or anything else on her protocol.  SHE DID IT!!!

Today also marks the ONE year anniversary of the scariest day we experienced on her protocol.  On this day last year Dr. Tina sat Reed and I down and told us that Addie's heart was failing.   She explained that Addie needed to be intubated in order to try and save her life.  She also explained that because Addie's heart was so weak there was a greater than 50% chance she would go into cardiac arrest and die while they tried to intubate her.  WOW, how do you hear that?!  Reed and I were shocked, it literally hit us out of nowhere, we knew she was sick but didn't really grasp the severity.    Dr. Tina then asked us to make some very difficult choices as to how we wished to proceed if Addie did go into cardiac arrest, decisions that no parents should ever have to make.  We immediately called our families and dearest friends and told them that they needed to visit Addie because it could be the last time they would see her alive.  Reed and I sat with her (she was so sick, very sleepy but still our Addie) and I remember praying over her and asking Him to protect her, to keep her heart beating and most of all to not let her be scared... I remember telling Addie that Jesus was in her heart and that no matter what happened He would keep her safe and that He would not let anything bad happen to her.  I explained to her how much He loved her.  I also told her that if she saw Him when she was sleeping to tell Him, Jesus I am not ready.   I told her to tell Him that her Mommy and Daddy still needed her.  I begged her to stay strong and I remember continually placing my hand to her heart pleading to God that it would keep beating.   I remember desperately praying that He would let her survive, that her time with us was not coming to an end.   I remember thinking about how the heavens would light up the second she arrived and how she would be the perfect little angel.  However from that moment, and every moment after, I have prayed that He would let me have her.  I continually tell Him that He can have her when I am gone and also awaiting her arrival in heaven!  I can't imagine a life without her, she is so perfect.  I pray and I pray that He would allow for me to be her mother,  to witness her grow into a beautiful woman, and that she could experience life.  I trust that whatever His will is for Addie it is perfect and I know that He will never forsake us but I do know that a life without my Addie is a life that I don't want to imagine living.

We left Addie in PICU room 5 that afternoon, she was surrounded by all of the doctors we knew that loved her.  (our Dr. Potter, and our beloved Nurse Practioner Mary)  I remember hugging Mary and telling her to not let them give up, to make them try everything.  I said the same to Dr. Potter.  Dr. Tina asked how long we wanted chest compressions to go on if that occurred and I remember telling her to treat her like she was her own, I begged her to do everything she could.  We hugged our precious girl and kissed her one last time and walked down the hallway to wait with our families.  That could have been the last moments we had her, the last kisses and the last hug.   I had to leave the room, we had the option to stay.  I couldn't bear the thought of watching her, I knew I wouldn't survive watching it if something bad happened.   Reed and I just paced the hallway wondering what was happening and thinking of our precious little girl lying there.  It felt like years and then we saw Dr. Kate (So blessed to have her as our PICU resident that day and every day thereafter... Kate you are a wonderful doctor and we LOVE you) she told us that Addie DID IT, the intubation was successful and that they were going to proceed with placing her dialysis catheter.  A while later Dr. Tina appeared in the waiting room and I couldn't hug her fast enough.  She told us that Addie's heart welcomed the help, that it didn't even think to put up a fight.  She said it couldn't have gone any smoother and that the second she was intubated she could tell that Addie just relaxed, and was at peace, her body could finally rest and begin to heal.  THANK YOU Jesus, what an amazing God we have.  What an amazing girl I have, Addie Lynn Brenden you are our MIRACLE, every day spent with you is a gift from GOD.  The joy that came over us that day was immense, the days that laid ahead were more than intense, words can't even begin to describe them, but SHE was alive.  She was with us and that gave us HOPE, I never doubted for a moment following that she wouldn't make it... I am pretty sure our team was still very worried and I am sure had I fully understood the severity of Addie's condition I may have been more worried as well... but I felt peace, HIS peace!!!   I have never felt closer to the Lord than in that month, He was with Addie and I in that room, every second.   I could feel his presence and I knew that He was with her, comforting her while she slept... I cry just thinking about His immense love for her and for all of us.

Tomorrow Addie will begin her end of treatment scans, she will have a CT tomorrow and then Wednesday she will have an MRI, MIBG scan and a bone marrow biopsy.  I am a mess, I have been a mess but thankfully I am not alone and thankfully my girl is right here!!!  Prayers are greatly appreciated for my girl; that her scans will remain clear for an eternity and that she will never have to fight for her life again.  We love you Team Addie, thank you for walking through this journey with us.  Here we go again!!   Joel Osteen says PRAY BIG prayers... There is a lot of big praying happening!!! Lets not only pray for Addie but also for all the other children who face this awful disease and other types of cancer... PRAY FOR A CURE, that Cancer would cease to exist!!! He can DO IT!

Ok Addie, lets do this... No funny business your weak Mother can not handle it.  
Best team in town!!!

Happy Halloween

Happy Happy Halloween Team Addie!

I don't think thankful is a strong enough word to describe how this Momma is feeling!  Praise God for these beautiful girls and this wonderful time together!

Catching Up

I'm I have been so hesitant to post anything because I keep waiting for someone to pinch me and for me to wake up... is this really happening?!  Did Addie just come home from her last inpatient stay?!  Did Addie actually just have her central line removed and are we really going back to "normal" life?!  Is that even possible?! 

Part 1:

It has been two weeks since Addie finished her last round of antibody therapy.  Praise God for another successful round!  I feel so awful, I was in the world's worst mood... I should have been the happiest Mother on the unit and instead I was negative Nancy. Completing treatment has been very hard and scary for me and sometimes my stress just gets the better of me!  Poor Addie was stuck with her crabby Mom for her last round of therapy, I did my best but I did hear a few times, "Mom, you're in a bad mood!"  Addie did remarkably well, she was definitely rage against the machine (her normal on morphine) but from a medical stand point she was very boring :), thank you Jesus! We played about 1000 games of CandyLand, had some visits with Art and Music Therapy, a visit from Aunt Sherri and Aunt Ashley and finished the week off with Daddy.  

Thank you again to the wonderful PICU staff, we just adore you!  You were so wonderful to us, you always made us feel at home!  We will miss you and not miss you all at the same time :) we love you PICU.  

Addie will continue her Retin-A until the middle of November.  Upon completion of that, she will have her end of therapy scans and praying that all remains clear she will officially have completed her protocol! 

What a blessing art and music therapy were for Addie!   Thank you so much for this adorable ukalele and for all the time spent with our girl.  You ladies are great and we appreciate you so so much!!!

Part 2: 

A little over a week ago had her tubes removed by our beloved surgeon, Dr. Potter!!  Tuesday, October 6, Reed, Addie and I woke up bright and early and drove to Rochester to have the procedure done by Dr. Potter.  There was no way anyone else was doing it, he placed them and he was going to remove them!  He is the best for reasons far beyond being an amazing and competent surgeon.  He was an absolute Godsend for me, he brought me comfort when I was feeling sad, strength when I was feeling weak and hope when I was feeling hopeless (and I'm positive he did the same for Reed).  He always knew exactly what to say and was so incredibly hopeful!  He was the man that removed that awful tumor that was threatening my baby's life.  I am beyond thankful for Dr. Potter and everything he has done for us, he is the most compassionate, caring surgeon and I can't say enough positive things about him.  We were incredibly blessed he was on call the week Addie was diagnosed, thank you God for placing him in our lives and for helping him to save Addie's!  We love you Dr. Potter!

The surgery was very straightforward and took less than 15 minutes with sedation. Addie came out of the OR with a simple bandaid.  She had very little discomfort and the area was only sightly bruised and bled very little!  She will have a tiny scar there and it will serve as a reminder of what she went through.  Her tubes were very good to us.  They delivered the medicines that killed her cancer, they gave her blood products when her body couldn't make them, brought her new stem cells when she was on the verge of death, and provided medicines that kept her alive!  Thank you Jesus for that Broviak, aka the tubes, because of those tubes Addie didn't have to suffer painful blood draws and IVs.  Addie was so fortunate to never have a central line infection.  As great as they were however, we were happy to be rid of them... No more: weekly dressing changes, red and irritated skin, cling wrap for showering and ouchie tape removal, water restrictions, and mandatory 3 day hospital stays for fevers!  

So much to be thankful for, I really am in awe of it all... Like was this just a really bad dream that has the happiest ending ever?!  Or is this bad dream just taking a small intermission?!  Despite all of the happiness and thankfulness, I still find myself scared out of my mind that we are finishing treatment!  A year and a half ago I couldn't wait for this day to come, I saw us rejoicing with fearless hoorays and here the day is and I continue to be scared.  That is life, our lives with a child with cancer, there are victories surrounded with fear but praise God for those victories!  I get so upset at myself when I get sad or scared because how dare I not be jumping for joy, there are thousands of little angels that never make it to the point Addie has.  Please help me pray that no more of our sweet children have to suffer from cancer.  Pray for a miracle that would erase childhood cancer deaths or better yet childhood cancer altogether!  We can hope can't we!!!  Big hopes give way for Big outcomes!  God let a cure come!! 

Cancer treatment gives a sense of control because during that time you are playing offense, and praise God our offense was victorious!  Being done with treatment means that Addie now has to play defense, her body must fight every day of her life to not let even a single cell divide unnoticed!  Her immune system has to be strong enough to fight a cancer that doesn't often leave survivors!  With neuroblastoma you have one really good shot and our shot is done, so please pray team that it was perfect!  Please pray that every single Neuroblastoma cell and every immature nerve cell has been killed or made to be what it was intended to be... If nothing exists at this time then it can never return!  Please pray that Addie will be a survivor and will never have to fight cancer again.  The relapse percentage of Neuroblastoma is 50% and if it reoccurs with the amplification that Addie has it would be a very, very bad thing!  Stage 4 Neuroblastoma has a poor prognosis but my girl has rocked the socks off of her protocol and lets pray it sent Naughty Randall straight to Hell!! 

How can one show their thankfulness for something of this magnitude, my daughter is ALIVE, she is here today and she is perfect!  Praise God!!!  Be thankful for this day Mandie Brenden because she is here!!!!  I will forever pray my fears away and have to redirect my mind to the place it belongs, with Jesus!!  There is no need to fear for He is in control!  

Thank you for all of your support Team Addie.  I can't thank you enough for all of the encouragement, love, prayers, gifts, and commitment to my girl!!  I will continue to update if the desire is still there!  I don't know what I would do without this wonderful Team praying Addie through... She still needs you all as the next three years are still very bumpy.  Please help me pray that she will remain cancer free for an eternity!  We love you Team Addie!!  Please keep the prayers coming for Leilani and Avery as well!! 

Last Round

Here we are for what I pray is the very LAST time my girl will ever be treated for cancer!  We checked in to the penthouse, aka PICU, for Addie's final round of therapy!  Praise God!

So many prayers accompany this day, the days that have lead up to it and the years and years to follow... Please Jesus let this be the last time my sweet girl ever has to fight for her life, let it be the last time she will ever have to be treated for cancer of ANY kind and especially for Neuroblastoma (two words I hate more than anything, cancer and that Nasty N-word)!!  Please God let her scans stay clear for an eternity.  Please let the toxins used to kill this awful monster not affect the long term health of my precious girl!  Most importantly, let this sweet child live a long healthy life abundant in LOVE and JOY!

I have been struggling with so many emotions lately and over the past month knowing this time was near... It is hard for me to even write this post, for fear that the floor is going to once again drop out from under us!  Is it really possible for Addie to be done with cancer treatment?!  Is it possible that we could live a "normal" life?!  It is crazy how scary that new "normal" life is for me to face.  The reality is that our future will never be blissfully/ignorantly normal again, because we now know all to well what can and does happen.  Unfortunately, Addie's future is accompanied by this awful dark monster called relapse... I have to find a way to get past that fear and not let what could happen ruin what IS happening!  I always try and keep my mind focused on how amazingly blessed we are that she is HERE and almost done with treatment, I mean how unbelievably miraculous is that!  Praise God!!!  However, the devil will forever try to steal my joy and my human tendencies will continue to shake my soul.  Thankfully I am NOT alone, it is out of my control and in the hands of the ONE who loves us more than we could ever imagine!  This past week was such a blessing (in disguise of course, they can't ever be obvious) and I know the Lord gave us that scan to ease our anxieties and to bring us hope in what the future holds!!  He is so good, so faithful!  I just have to keep doing my best to focus on His truths and not the devil's ever so convincing lies!  

Thank you Jesus for my sweet girl and for her amazing response to therapy.  Thank you for allowing me to be her mother!  Thank you for these wonderful doctors, nurses, pharmacists and researchers that made this therapy possible!  I pray that it will keep my baby cancer free for an eternity!  Praise God for our amazing family, friends and followers!  We love you Team Addie!

Tubes out Tuesday... I can't even believe it!!! 

Please say a special prayer for two little sweethearts, Avery and Leilani.  Leilani received a new heart today and Avery is in the fight of her life against cancer.  Please Jesus take care of these two little earthly Angels!

News

Went from the scariest day ever to the BEST day ever!  Her preliminary results are in and she is CLEAR!!!  So thankful, beyond thankful!!! Praise Jesus!! Thank you Team Addie!  Thank you Jesus!  

Live each day full of joy and thankfulness, never let a moment go unnoticed or unappreciated!!! Life is a gift, a precious gift!!! 

Praise God!!! Thank you for this amazing little girl and the amazing news we received today!  Thank you that we can live today and hopefully many more without fear of this beast returning to take our precious little girl!  

Love you Team Addie

Surprise scan

So scans are awful things and especially surprise scans... They are great if they show no disease but they demolish your life if they are positive!   I don't want to go into all the details but I am asking everyone to please pray for our sweet girl.  Addie has a brain and spine MRI today at 12:00, please pray that it is clear and that she hasn't had a relapse.  Pray hard team, this Momma is beyond scared!!!! I know the He will take care of her no matter what but I would definitely like to have her with me until I am long gone from this earth (call me selfish!). Please Jesus let Addie's scans be clear for an eternity!  Please Lord let me enjoy her smiles and her amazing presence for years and years to come, until forever!  

Thank you Team Addie

We are still here

Sorry Team, We have been busy living life :) a relatively "normal" life!!  Ha, normal?! What even is that?! 

Just some quick pictures of our girl!  She has been really good, obsessed with pigtails and dresses!  She started preschool which isn't her favorite thing quite yet, but I think eventually she will realize she has the sweetest teachers in town and she can have a lot of fun there!  Thankfully she loves daycare and just adores her Coral!

Lots of things are coming up... Definitely some exciting things, but I continue to find myself struggling to keep my mind on those positives!!  The fear in being done is so scary and what that means...  Trying to NOT live looking over my shoulder waiting for the ball to once again drop, fearing that our world will once again fall apart, and worse the fear of losing my precious girl to this awful disease. The fear will continue to try and haunt me and some days are definitely better/worse than others, but I do my best to LIVE each day joyful and thankful... And how dare I be sad or upset when I have this beautiful face looking up at me, telling me she loves me to the heavens!  

I love you Addie Lynn Brenden!!!  Please Jesus guard my girl from this beast or any others that may come her way!  Let her live a long, healthy and most of ALL happy life!  Thank you Jesus for this life and for these precious little girls that call me Momma!  Amen