A huge victory (out of the blue) today for Charlotte!

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As my brother Tim, his wife Esther, and my nephew Evan sat on a NC beach yesterday enjoying a family vacation with some of their extended family, a rainbow appeared in a mostly cloudless sky when it hadn't rained in many days. They snapped its picture and texted it to me. While receiving that text picture, I was currently confirming Charlotte's appointment to have her central line removed. God's timing never ceases to amaze. His blessings and love shared with us from so many of you over this last year and a half. And this momentous occasion was no exception!

Since Charlotte's last check up looked so positive, Brian and I decided to send an email to her doctors on Sunday asking if they could see any reason we hadn't thought of that Charlotte's Central Line should remain. After all, lab draws in a couple weeks would only require a simple prick and her scans in September can be done via peripheral IV. Surly those are not reason alone to keep her tubies any longer then necessary? Monday morning, the team called me to say it was a reasonable request and in fact if it was their child they would want the same! They scheduled her immediately and the OR at Duke was able to get her in THIS MORNING for the procedure to remove her central line!

Charlotte is now home shaking off the anesthesia and resting. After her site heals in a week or so, she will be able to participate in life again at full capacity, enjoying whatever it is her heart desires. If you ask her, she'll say "swimming! Gymnastics! Baths! School! Dance classes!" Charlotte's central line has represented so many things. It has carried life saving medications and blood products over the past year and a half. It's been accessed countless times to draw labs and administer various medications and anesthesia. Brian or I flush and hep-lock it every single day. I change her dressing once a week. We change both caps several times a week. It's become a part of her and she's been fiercely protective of it. But saying goodbye to these "tubies" she so lovingly calls them, is a HUGE victory for our baby girl. Now being the mushy sentimental mommy I am, I realized yesterday we had no footage of the cleaning and flushing of her tubies routine so I propped up my camera and took a short video, mostly for her to be able to look back and see her line care that we did every single day. After all, what will she be able to truly remember of all of this? Of course, in taking that video, I caught a gem of a conversation with her about all the things she wants to do once her tubies are gone❤️ I will post it below. (Those of you receiving emails probably can't access the video links I've learned so you would have to go to her care page/blog directly to click on the link (http://charlotteannmariereynoldsupdates.blogspot.com)

So Charlotte will finish oral medications at home to wrap up Immunotherapy and then have scans in early September. Once we see those results...we can truly celebrate Charlotte's end of treatment. Your prayers and love have helped carry us every step of the way, please keep them going❤️🌈

Bye bye tubies




The rainbow from my brother and family yesterday 

Heading in this am! Not happy since she couldn't have breakfast before the operation but you should have seen the joy on her face when we told her why she couldn't eat this am!! 


Hangry after waking up from anesthesia 

Stop taking pictures of me mom. Jeez. 
Ready to go home 

Yesterday we met with a new pediatrician to start establishing g her routine pediatric care here locally in Alex. She'll still be seen at duke by her oncologist once a month for a year, but now if she has normal childhood things pop up it's not a 5 alarm fire causing us to take her into the hospital every time! Yay huge victory here!

Meeting Dr. Chris

Sand play 


Ice cream dessert after dinner 

Playing in the sprinkler with her amigos 

Outdoor movie with friends

Making slime 

Comments

  1. ppa1dayatatimeAugust 1, 2017 at 6:35 PM

    Daily line care is so VITAL and you sure do it like a PRO! Congratulations to Charlotte on her central line removal!!! XOXOXO

    ReplyDelete

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