The silent, forgotten patient

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 and Parker through this. Siblings are often the silent patients. Sometimes their needs forgotten. We try so hard but God knows we aren’t perfect and we could use some help in helping them sort through feelings and answer tough questions. Honestly, learning how to help our children trickles down into our own processing. It’s been helpful for me to speak to myself like I speak to my own children about this. Taylor and Parker have suffered too. But I also know that everything our family has been through has also created something. It hasn’t destroyed. Each moment whether grace filled and inspirational, or heart wrenching and painful, has been a building block in our family and in the character of our children, ourselves. We can do this again. We do not have a choice.

Please keep praying as we await her bone marrow biopsy results which we should get back any day now. God please let them be clear. We are still grieving and sorting through the shock of this new reality. Still learning about possible further therapies all the while still trying to manage every day tasks such as your typical house hold duties, bills, insurance, Brian’s work, the children and their activities, etc. life goes on in the midst of it all. The world keeps turning even though ours is upside down

We are feeling you with us. We feel your love and strength. Your prayers wash over us and help to lift us. How much support we feel from all of you out there who have cared all this time.  I cannot tell you how much love we have felt here at Duke. I am not exaggerating when I say staff fought over who would care for her. Thank you for it all: your love, prayers, uplifting messages, behind the scene planning for our potential future needs, the check ins, the TLC for Parker and Taylor this week (several friends helped keep them so Brian could work while I’m at the hospital, and now once again Schuey and Neal pause their own lives to be here again for us). She can and WILL keep going, keep moving. And we feel you moving, quietly at times while loudly at others, behind us.

#charlottestrong  #familystrong

Her best medicine

Their best medicine 

Her best medicine

Fresh air, family, and ice cream 

Legos and slime. 

Therapy dog love 

After we were admitted Charlotte graves a marker to wrote her name on the white board and asked in her sweet voice “momma? How do you spell rules?”😆You sure do rule baby