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!

So sweet

I ran to the restroom and came back to this...

All of my favorite things in this adorable little basket and I have no idea who it is from!!  I would love to know so I could thank whoever it is!!  

Thank you so much, how amazingly thoughtful and seriously, all my favorite things!!!  Thanks for brightening our day!! What a blessing!!  

I love you Team Addie!! Best team around!!!

Day 1 Round 3

Addie is feeling great this morning!  However, things can't go perfectly smooth, that just isn't Addie's style!  Last night her face started to swell, eyes mostly and lips!  This morning the swelling persists (angioedema) and because of that she is at a higher risk for anaphylaxis so they are going to hold the infusion today and see if her swelling will subside!  For now, she is doing great and was happy to be unhooked from her tower!!  

Everyone is being extra cautious because this is Addie we are dealing with, can't trust her for even a minute... Little stinker!

Round 3

We are on our way to begin round 3!  

What an amazing break we have had!  In the last three weeks I have watched Addie just be a "normal" happy little girl and WOW has it been amazing!  It is so reassuring to see her when she feels good, to know that someday soon that will be all we will know... No more sick, crabby, needy and MOST of all NO more torture treatment!!!!  I am so thankful for this treatment and that it is helping to save my child's life but at the same time I hate what it does to her!  We nurse her back to health just to beat her back down again!  That sounds awful but that is basically what we have done for the last year of her life.  Praise Jesus that she recovers and is here with us, perfectly herself!!!  She does it better than anyone, so resilient and never once feels sorry for herself or asks why!!  I really am the luckiest woman alive to call this little girl mine... I love you to the heavens Addie Bean!  

Here we go Team Addie!!  Please help me pray for a smooth round 3 and that Addie will never have to fight cancer again!!

Addie is 4

Addie Bean is 4!!!

It was exactly what she wanted... a party at "Blee and Blinda's" and rainbows!!  

What a year it was for my sweet little girl... Her third birthday will forever leave a mark on my heart, I can still remember the sadness that accompanied that special day.  We have all come so far since last summer.  I am just reminded at how each day is a GIFT, a true blessing.  Addie's birthdays will forever be extra special.  First and foremost, because that was the day we welcomed her into this world and secondly, because it will serve as a reminder of the TRUE miracle that she is.  I don't want to rush the clock but I can't wait until that 9th birthday comes and we are 5 years out from treatment and she is deemed CURED.  I pray that day comes and that the years leading up to it are filled with wonderful memories with my perfectly HEALTHY girl.  I pray that her life will be as "normal" as possible but that we will forever give thanks for how truly remarkable her life is and for how unbelievably blessed we are to have her here with us...  Thank you Jesus for this beautiful little girl and for the last year we shared with her.  Please Father let there be 100 more!

This video collage was put together by one of the sweetest ladies in town that I feel so blessed to have become friends with through all of this... Jamie you really captured this last year and the song is just perfect, thank you so much!!!

Tears fell in that video, but thankful that most of them were happy tears.  What a year it was, thank you Jesus that she is HERE after it all.  

Now for the birthday pictures...

Treatment Update... The last round of antibody therapy was intense.  Addie had a day of severe hypotension that forced the medicines to be shut off.  She also dealt with a bad rash, hives, fevers and edema but she made it through!!  We had to modify the protocol due to her blood pressure problems but she was able to get all of the antibody.  We are currently delayed two weeks for the next round due to her kidneys, they took a little hit during the last round but we are praying that they will recover.  I am thankful for the little break but obviously praying that it will not affect her long term outcome.  So thankful for the ICU team and that when the medicine is shut off her body recovers!!  Thank you Jesus for Addie's resiliency and her fighting spirit.  I pray Lord that this cancer has been long gone and will never return.  I pray that her kidneys will recover and she will be able to have the next round of therapy.  I THANK you for this break and for the time we have had together.  Addie has been feeling good, playing again with her sisters and cousins.  She is back at daycare and has been so good.  It is so good to see her feel good.. that SMILE, can't get enough of it!

We will be back in Iowa City the week of July 27 for round 3!!