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!!

Round 2

We just checked in for round 2 of antibody therapy!  We have been warned that this and cycle 4 are the worst and come with the highest risks!  We started this round last week with a half dose of IL-2 and it went very well, all things considered!  Addie ended up in the hospital that Tuesday night with fevers but all in all she did wonderful!  She was in great spirits all week and felt really pretty good!  We were able to leave on Saturday after some begging by me to the doctors!!  Thank you so much Dr. Kambreros, you don't know how therapeutic it was for us to spend two days at home... Such a blessing!  Addie enjoyed time with her sisters and cousins and was all rested up for this big week ahead!  

Addie needs a blood transfusion today before we get started with the big stuff so we will be starting a few hours later than planned!!  Not sure as to why her hemoglobin has dropped?!  That always gives me a little anxiety but we haven't had to have a transfusion in months and I feel very thankful for that!  

I continue to be overwhelmed with thankfulness to our faithful God!!  There have been a lot of very heartbreaking things happening all around us and I am reminded of how incredibly blessed we are and so thankful for where we are in this moment!!  I am so thankful to have my girl here with me and doing so well!!  She turns four in just two weeks and I found myself today thinking about her golden birthday... 29, Lord let that be!!  Thank you Lord that her cancer has responded to therapy and please Lord shield her from it ever returning!  

Please say prayers for my girl this week!  Please pray that her kidneys, heart and lungs will be able to tolerate what this medicine is going to do to them!  Please pray that her body is resilient once again and that she can weather another storm!  Please pray that this treatment is working and that no microscopic disease remains in her body!  Pray that she is truly NED and for a lifetime!  

Please say a special prayer for our friends the Flicks as they are going through a very hard time with their precious daughter Avery (Team Avery).  Please pray that answers will come and miracles will happen!  

Thank you all for your continued love and support and for continuing to help carry us through this storm!  We love you Team Addie!  

Antibody Round 1

She did it... round one of antibody therapy is in the books!!  She did wonderful, better than I could have ever imagined!!!  Praise Jesus!!! We have a wonderful God!!

She battled some fluid retention the first night and then peed like a champ and ended treatment right around her starting weight... Yay Kidneys!!!  She had some pain the first day, mostly belly pain but the following days the pain was well managed!  Her morphine definitely made her a bit angry but nothing myself and Daddy couldn't manage!! She had sky high fevers (105.6) but was unaffected by them.  She actually seemed to be in the best mood when her fevers were the highest!!  The fevers weren't infectious in nature just a side effect of the antibody itself which made them pretty easy for her to deal with!!  However, it was definitely alarming feeling her that hot and seeing the reading on the thermometer!  She had a slight issue with low blood pressure but otherwise sailed through the treatment!  She was finished Thursday night around 9:00PM and since has felt a little cruddy!  She is battling some tummy issues and diarrhea!!  Praying that soon will subside!  We got home this afternoon and are hoping that she will perk right back up to our crazy little Addie Bean!  

So much to be thankful for!!!  Thank you Lord for seeing us through this first round, for keeping her heart and kidneys strong, for keeping all of the really severe side effects away and for keeping my sweet girl out of harms way!  Thank you Jesus for the wonderful PICU staff!  Thank you Team Addie for all the prayers, and for all of your love and support!!!!  Thank you Grandpa Darwin for taking care of my patients and a big thanks to both Grandpa Darwin and Grandma Carol for taking care of my girls while we were away!! 

Praying for some healing time at home.  Always praying for the cancer to never return... Crazy how anxious I feel about that starting this treatment, like in some way this could trigger things to grow, I was reassured this could not happen!! But as always please say a special prayer for her cancer to never return!!  Praying for a fun summer of quality family time!! 

Addie's next round starts the second week of June!!  In the mean time, we will keep up with the shots and start Addie on Retinoic Acid!  There are some yucky side effects that can come along with that such as depression and suicidal thoughts.  She has to swallow four adult size pills a day, please pray this goes well and she stays my positive "sweet" Addie Bean!! 

Go Team Addie!!!