Dreams and Nightmares

Pushing me on the swing brings Charlotte so much joy that even though I’m motion sick for hours afterwards, I can’t say no. She needed the smile today. I wish I could say she doesn’t remember any of the pain and fears from the last 1.5 years but she reminds us from time to time, as she has done today, that there are things that haunt her. All day today, she has carried the feelings left behind by a scary dream that she had last night. There was a “big scanner that looked into my bones” and something about me telling her not to worry because there was enough oxygen. And something about falling down into a drain and Taylor screamed and that if she fell down into the dark hole she would die. She cried saying she doesn’t want to die. From 3am-4am and again many times today, her dream felt so real. She wanted to tell us all about it but you could see her choke back her tears. She must have told us the dream 5 times already today and when she laid her little head on her pillow for an afternoon rest, she looked up at me afraid. She told me she is scared to have that dream again. Of course, we comfort her and make her smile and laugh all we can, but here she is, showing us the marks that fighting cancer leaves behind. I’m grateful they are just dreams, residue left behind from experiences we thought maybe she had forgotten. She is home safe and sounds and feeling great. A dream is a dream after all, right? But when I wonder if she had forgotten the time, for example, that she had to have a CT scan while awake two separate times during transplant because her lungs were so damaged from treatment that it wasn’t safe to sedate her due to the possibility of decreasing her respiration rate, she shows us that these moments are lying somewhere there in her subconscious. Maybe not in her working memory but they are there, lurking and haunting our sweet girl. 

As I went to write this entry, a flash came across my screen from Riley Rose’s Carepage. I haven’t completely taken a break 100% from following Neuroblastoma stuff and families we’ve come to care about, but after this post...it is most certainly time to unplug and do what I said I would. But first, there is a family, with a scared mother whom I made a promise to, who needs the only thing I can give them, we can give them. They need us to lift them up now more then ever as they have learned that dispite the further treatment Riley has received up at Sloan Kettering, her cancer has progressed and is no longer treatable. They had finished additional chemo and radiation at Sloan with the hopes these scans would show she is ready to begin Sloan’s specialized antibody. The scans showed progression of disease into her sinus cavity and arm. They have been told there is nothing further in the world that can be done. They have decided to take their little girl, their entire, world home and leave her in God’s hands. She doesn’t know this of course. She is hoping to go home and see her friends and family and start school. She isn’t feeling sick. And her parents have to put on a brave face so she isn’t scared, so her little brother isn’t scared. And go home? Get ready for Christmas? Try to get her palliative care? 

What is being asked of them...what they will be going through...please pray and send conscious streams of love and strength to this family. They are living our own worst fears. They are living out their nightmare. The dreams they once had for their sweet Riley Rose and for their own family life has been taken. And as we celebrate Christmas, may Jesus wrap his arms around them and bring the healing that only he can. 

We also thank you in advance for beginning to pray for Charlotte who will have her scans Dec 12-14. I always seem to need a couple weeks of emotional prep time before scans, but this time that is hard to do when simultaneously trying to soak up our time home together for the holidays. It always seems, to me, that we are moments away from our world drastically changing when it comes to scan time. We live in 3 month increments I suppose. So, we will have 3 grueling days at Duke for first the MIBG injection and an audiology appointment to check for hearing loss due to all the treatment, then the next day her CT and MIBG Scan, and then finally the brain MRI Sloan requires for her to continue on this experimental trial. We will push her bone marrow biopsy off until we go back to NY in Feb. Thank you for praying for clear scans so our girl can keep going, keep moving. So despite any nightmares, Charlotte will get to live out all of her dreams and hearts desires. And so we can take a long needed deep deep breath and enjoy our time together at home this Christmas. 

A recent picture of Riley Rose and her family 

Charlotte getting a kick out of pushing me on her swing 🤢😆