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Showing posts from June, 2019

Home sweet home

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Home sweet home❤️A quick visit to day hospital clinic at Duke tomorrow for a shot aimed at helping her bone marrow bounce back after this chemo (insurance hiccup didn’t allow us to get it sent home in time to give it to her here). But right now, she is feeling good! She is so happy to be home and we are so grateful for all the love, prayers, and support. We feeling it wash over us, lifting us up. Below is a picture of her swim team sending their love and support, cheering our Charlotte on. She was so happy and proud when she saw the banner when we got home. She will be home recovering from chemo. Most likely when her counts drop, we will go back inpatient with a neutropenic fever and remain until she recovers. But for now, it’s home sweet home. Thank you God for everyday, and for the chance to fight❤️🌈

CLEAR BONE MARROW❤️🌈

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OH god thank you! We have good news! Charlotte’s BONE MARROW BIOPSY CAME BACK CLEAR! This is best case scenario for her! We can truly say this is a small focal relapse with no bone marrow involvement detected. Treatment will continue as planned (I will write more about this plan soon but it will involve chemo, localized radiation, and a new immunotherapy, with the hopes of getting back clear and onto maintenance therapy again). We celebrated at her request with a walk over to the hospital food court for Chic Fil A nuggets and pickles and milkshake😍I have felt my first deep breath since this nightmare began again. And look at her playing with child life today (video below). She is tolerating this ICE chemo tremendously so far. Some nausea coming and going but look at her keep moving, keep going❤️🌈We are feeling your love and prayers wash over us. Thank you God. #charlottestrong #charlotterules Link to the short video clip❤️ https://youtu.be/-oTGfm17Lw0

The silent, forgotten patient

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After a rocky start Monday due to some complications with her port placement, Charlotte was able to begin chemo Monday evening. 3 different chemotherapies over the course of 5 days, along with various other medications to help her combat side effects. Tuesday morning was rough as she woke with lots of nausea and vomiting. Her day got better though and she was able to play and be comfortable. Today, she felt pretty good overall and her BEST MEDICINE, Taylor and Parker, came to visit her (along with daddy and Nana Schuey and Poppy and earlier today a friend of mine, Jaime) But there is nothing better in the world for her and her spirits then being around her brother and sister. Nothing brings them more comfort and joy like they can for each other. I’m not sure who needed today more, them or Brian and I. My heart is still feeling the warmth from all their giggles and tenderness and goofiness and easy familiarity that they have with each other. And Child Life  came to help us help Taylor a

Day 1 of healing

I have started and stopped this post several times. The words don’t seem to be coming. Today, Charlotte is beginning treatment. She is having surgery for port placement and a 4 location bone marrow biopsy. She will then be admitted to Duke Children’s to begin what we want to call day 1 of healing. The thing is...Charlotte is not sick. Charlotte has never felt or looked better. Her cheeks are pink and her blue eyes twinkle with the sweetest and strongest spirit. Her hair, sun kissed and wind blown from a week at the beach. Her skin glowing. Her energy matched with her siblings and her friends as she keeps up with them all, step for step. Her imagination and spirit and body are STRONG. Even her exam and labs and other scan results look completely healthy. This spot in the femur looks contained but it’s not that simple with Neuroblastoma. A spot found (disease in her leg bone confirmed by MIBG and MRI) means there may be more cells lingering that are not able to be detected yet. We can’

A new fight

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Saying this makes it real. I don’t want to write this. Duke has confirmed that the spot on her MIBG scan is a small tumor in her leg bone. The lesion is less then 2 cm in her left femur, just above her knee. The MRI confirmed our fears. Although the spot is small, we can not be sure it is co rained to only this spot. We do not know if more cancer cells are lingering somewhere, remaining undetected until they have grown into a larger mass and able to be detected. She is not having any pain there and no mass felt. Her labs and other scan results were all normal. She is asymptomatic. She is feeling great....she hopped on one foot most of the way into her appointment, she showed everyone her missing teeth, she talked about starting kindergarten and swimming and gymnastics and going to the beach this week and to the Bahamas in July. Oh God why. Please bear with us as we yo-yo emotionally right now. We wish we could reach out personally to everyone who has loved and prayed for our girl all

A new spot on MIGB

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I started typing but erased this post so many times. I don’t want to say it. Duke found a spot on her MIBG scan on her left femur. They could not fit us in for a MRI until tonight and so we came home .  I’m driving back in later with Charlotte for them to get a closer look on the MRI to confirm what they believe. Our doctors believe this is her cancer returning. We can’t hardly speak and have prayed for God to give Brian and I strength and wisdom as we try to explain to our children in simple yet truthful terms what is happening. We need everyone to storm the heavens for our girl. Pray. Oh God please help us Charlotte made a craft with child life during our meeting with the doctors. They helped her make these sunglasses and asked her to draw a reflection of what she wants to see. She drew a rainbow in one lens and the beach in the other. God, please hold our baby girl tight

Scan week prayers

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Hi Village. The time has come again for scans and disease evaluations up at a Duke Children’s. As we start to face this week, which is always indescribably difficult internally for Brian and I, and although sadly part of Charlotte’s norm, disrupting and at times upsetting for Charlotte, we can celebrate several things in the midst of the anxiety that this week produces. This weekend was a special one for 2 reasons😊Charlotte has her first dance recital and truly enjoyed performing after all her hard working learning her 3 dances. She was self-assured, confident, courageous, and absolutely chock full of cuteness! She was up on a big stage in front of at least 300 people! She was so proud and had a lot of fun. When I get the video from her dance school, I will defiantly share it! The entire recital was moving and watching her up there getting to be part of it all, shining her little light, was so special. What a blessing that moment was! In addition, leading up to Charlotte’s scan we

A shining moment worth sharing

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At first glance, she looks like a cute kid, maybe about 5 years old, who can swim across the pool by herself. She doesn’t look like a kid who has had to recover from massive amounts of toxic chemo, which has a tendency to wreak havoc on their lungs and many other organ systems, nor heal from 20 rounds of high dose proton beam radiation. She doesn’t look like a kid who will go to Duke Childrens Hospital over 3 days next week to be scanned for metastatic disease, Stage IV cancer, and be evaluated for over all current health, late effects, evidence of any disease. She cannot swim next week in the first official swim meet because she will have a peripheral IV kept in her arm for access. So today, today she amazed us all again at her teams practice mock swim meet. She swam her little heart out, unassisted and earned herself her first ducky. If you look closely at the video, you will see her smiling at us as she swam her best towards us. Look even closer and see the yellow rope she could h