Chicken soup for our soul and now on to the next "adventure"

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Looking back to last Easter when Charlotte was fighting for her life right at the start of this journey, just days out of the PICU and finishing her first round of chemo, this Easter was beyond special for us. We were home all together. We got to go to church together and celebrate Jesus. His life and death as evidence of Gods love for us all while holding our Charlotte, who in turn, shines God's love for us. It was a very emotional weekend for Brian and I. But we played and enjoyed the long weekend with our 3 little ones all together. It was truly chicken soup to our soul. And it was a perfect moment in time enabling us to pause time and watch Charlotte  run and play and laugh and be. Today, the next "adventure" begins.

Charlotte begins a new medication today at the start of round 2 immunotherapy. She will be able to do this part of immunotherapy out patient but needs to be close to the hospital in case of severe reaction so we will be staying at The Ronald MacDonald House near Duke. IL2 is given as a 96hr infusion so she has a new "purse" she must carry with her at all times that contains her pump that slowly administers this medication into her central line. "Look mommy! It matches my shoes! Look my bag matches your bag and your shoes too!" Good thing we wore black for this little fashionista😂. Evidently carrying around "baby R2D2", as we call it, will not be a bear. True to Charlotte form, she's up for anything. And so this week's "adventure" begins. New medication with its own set of risks, new "home away from home" at the RMH, and a new routine that comes with this.  We will pray she can tolerate this IL2 without any adverse reactions or atleast no game changing ones. This medication will incite an impressive immune response causing her Natural Killer cells to reve up and attack any Neuroblastoma. Next week she will be hospitalized as the IL2 will be given along with the immunotherapy drug Unituxin she got in round 1 where they will work together to wage quite the war inside our little girl. This week should be easier on her then next. We've been told to prepare for a rough week next week. So for now, we will harness our adventurous spirit again and enjoy our time out here in durham as she feels up to it! We are so thankful for my brother, Uncle Tim, to come down for this week to be near to help with Taylor and Parker while we begin this round❤️.  And as always, thanks to all of you for your continued prayers and encouragement as we continue walking and facing whatever comes next. Most of all, we thank the One who provided us this special Easter gift, and as with every Easter, has brought forth life from death. We can feel Jesus alive, living through our baby girl and through each of us.
Easter!




Gone fishin' 



Caught her first fish! Jordan Lake near our house 

Resting while her brother and sister swim in the lake. Can't wait for her to be able to participate in everything she wants 

Decorating Easter Eggs 

Fire pit fun

Peep s'mores!


Bike ride and Pokémon Go as a.family 


Rainbow on Easter from Grandma and Choo Choo 
New "purse" with her IL2 medication and pump ✊ 

Comments

  1. ppa1dayatatimeApril 17, 2017 at 5:05 PM

    How adorable Charlotte is...how brave and sweet...Happy Easter (for yesterday). Thank you for sharing your chicken soup for the soul with us, much needed!

    ReplyDelete

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