Friday, March 4, 2016

Still Here

We are still here Team Addie and our girl is doing great :). She just had a check up yesterday that included an Ecco.  Her heart is strong and healthy!!!  How amazing is that?!  It really is a miracle... But that is Addie, our little miracle!!  

Addie is doing wonderfully.  She is tolerating the medicine for the trial great, so far no noteable side effects... thank you Jesus!  She is having a blast in school and we have enjoyed some wonderful time as a family.  It is crazy how "normal" life feels, like did what happen really happen?!  
I just said to a friend the other day how incredible life is right now and how terrified I am by that,  because I know how quickly that life can be ripped away. Healthy one minute, sick the next... Here one minute, gone the next!  The moral of that story is to VALUE life, cherish it and enjoy every single moment!  The lives that we live really are precious gifts and nothing is guaranteed!  
Every day I struggle with fear and worry and each day it is a battle to see what will win.. Is fear going to rule the day or is HOPE, joy and love?!  The second sure does make for a better day :). 
My heart overflows with gratitude, gratitude for each day and every minute shared with my three beautiful girls!!!! Gratitude for God and for all of you.  Praise God for this life!!  A thankful heart sure helps keep those worries at bay.  
I just told a patient the other day that I know God's plan is good and I know His will for Addie is perfect.  However, with that being said, if His will doesn't line up with my plan than how good can it be... Fully trusting in His plan is hard. That plan is easy to trust if it involves my little girl defying the odds and kicking cancer's butt but if she doesn't than where does that leave me?!  I just read the other day to let Go and LET GOD (an amazing Mother's blog who is fighting for her life, prayers to you Jamie, what strength and courage you have, keep fighting)!!  What freedom I would feel to let go, Lord help me to fully let Go!!!  He loves my sweet Addie Bean even more than I.    
I remind myself that we don't have God's wisdom and we can't understand fully the paths He has laid out for us.  I also remind myself that wherever those paths lead He will be with us, we are never alone and never forsaken!  
Cherish your life, delight in each moment and give Thanks to the Lord for He is good!! Trust in His plan, knowing that someday it will all be clear and someday we will all be together in pure bliss!! 

So much love Team Addie. 








Tuesday, February 2, 2016

Honorary Captain

Last Friday night Addie had the honor of being a captain for the PHS basketball teams!  It was an incredibly special evening spent with my family in the school that I grew up in (and had not been in for 13 years).  I made many memories in that gym but the memory made Friday night definitely TOPS them all!!  Thank you Pleasantville for your loving support of Addie and making my family feel right at home!  What a blessing it was to spend the evening in your company.  

Go Trojans





Wednesday, January 6, 2016

Clear Scans


All clear and enjoying some food :). Our God is so good and my girl remains clear!!!  Beyond thankful, beyond excited... So amazing!!

Thank you for all the prayers, comments, love and support!  It means so much to us!  Best team in town!! 
Love you Team Addie


Tuesday, January 5, 2016

Prayers

Hello Team Addie... Sorry to spring this on you all, but we could use some heavy praying over the next day for our girl!  We are having some scans and a bone marrow biopsy done tomorrow in Michigan in hopes of getting Addie enrolled in a clinical trial!  More information to come :). Her scans have to be clear to enroll!!!! Pray, pray and pray again!  We are currently in Grand Rapids, Michigan at the Helen DeVos Children's hospital.  We all made the 7 hour drive yesterday and survived :) 

This is an exciting study that has shown some promise in preventing relapse... Neuroblastoma relapses at a 50% rate and this Momma wasn't comfortable with that, so after an anxious Google search I found Dr. Sholler and her study with DMFO.  

A full scan happens tomorrow which is obviously always nerve wracking!  Praying hard, our God is good!

Thank you Team Addie!
Love from Michigan from this little cowgirl 


Thursday, December 24, 2015

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! 


Wednesday, November 18, 2015

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



Monday, November 16, 2015

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!!!