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

Home Sweet Home

Sorry for the delay... We got home Friday night at 12:00!!!  The second Addie's infusion was done we were out of there :). It was crazy loading up everything and everyone at 10:30 but there is no better place than HOME!!! The next day Addie was up, happy as ever, playing outside and having a good old time!!!  Our neighbor friends let us borrow their amazing blow up slide/pool and it was a serious blast for the kiddos, moments like that my heart is so happy!! There is no greater gift than watching Addie play, smile and be a "normal" kid, praise Jesus for those moments!!  We are so blessed to have had many of those times over the last few months!  

I hate to post anything too soon during her actual treatment for fear I will jinx it... Me and my superstitious ways, but this round was the best one yet!!  She was so happy the entire time, dancing and playing with the nurses and just being her silly, sassy self!! I really think they would have liked to kick us out of the ICU but with that medicine and Addie's unpredictable ways they were stuck with us!!  Addie brings some excitement to the ICU both good and bad!!!  

After Addie's onset of angioedema, we enjoyed a days rest with no infusion and no shot and luckily her swelling subsided after about 24 hours!  She woke up the following morning with normal eyes and lips :). They started her back up that day (weds) at a half dose of GM-CSF (shot) and a full dose of the antibody and she tolerated it wonderfully!  It was the first infusion she had that she did NOT run a high-grade fever and the fever stayed away the rest of the treatment... Praise Jesus!! 

She has responded differently each time to this stuff and gives us a new side effect each time... I sit in anxiety basically the entire time the infusion runs and thank God each day it is off and has made it through!  Praise Jesus that she has made it through three rounds!!  We are over half done!!!!  Thank you all for praying us through and walking with us through this journey!  Addie continues to be the strongest, bravest girl I know... I can't wait to tell her someday how she kicked the day lights out of Naughty Randall... He didn't stand a chance!  

Our next round is the big dog, the nasty one!!  Luckily, it is the last time Addie will have to face both IL-2 and ch 14.18!!! That two week round will start in about 2 weeks!  Addie will also have a MIBG scan and bone marrow biopsy next week to ensure everything remains clear!  Scanxiety is already in full force... Those scans have to remain clear the rest of her life or else her path will be very dismal!  This cancer doesn't reoccur and let you live, especially not the type Addie has!  Please continue to pray that my girl will be cancer free for an eternity!! That she will live to tell about how Jesus Christ and an amazing team of doctors and nurses saved her life!!  

Thank you Team Addie, your love and support is unbelievable!! 

She LOVED this ukulele... couldn't get enough of it!!  She just loves art and music therapy, so thankful for those programs.

Whenever she hears certain Christian songs this is how she performs... Seriously MELTS my heart.  My sister was able to get this priceless video because in the past she refuses to let me video her when she is singing like this.  She is worshiping our God... so AMAZING!!!

And then a little Beyonce... talk about a swing! Haha!

Just being her silly self, using adhesive from her stickers to make boogers!

Emma really missed her big sissy!