I realize that sometimes on mobile versions of the blog, the songs don't always show up. If you get a chance to listen, please do, they are some of the most meaningful songs to us! This song has been running through my head for the past few days.
As we headed to the hospital Thursday I knew we should be finding out the results of Ellie's lumbar puncture...finding out if those tumor cells would be gone. If you remember last time, we were told they were gone...and then the next day told it was read wrong and they were not gone, just a less concentration. My heart continued to say, they will be gone this time, but my brain kept trying to tell me other things...I did my best to keep those thought out of my head, and thankfully Ellie's OT appointment helped distract me. Our appointment was almost over and they called Ellie to clinic over the loud speaker...my heart about jumped out of my chest. They never call us to clinic over the speaker, especially when we haven't even checked in yet. I joked and said, they can't wait to tell us her fluid is clear! As our favorite nurse practitioner walked in (maybe we should have another child so we can name that one after her...you have to read way back if you don't get this joke, we named SG after the last nurse practitioner), we heard the words "her CSF is negative". While I could believe it, I couldn't believe it The tumor cells in her CSF (spinal fluid) is what put her in the high risk category when this all began and made this a much harder cancer to treat, and now they are gone. At that moment in time, there was no cancer in my child's body for the first time in 6 months. I desperately tried to hang on to that thought...but soon my brain started up...and my body's natural defense mechanism kicked in...trying to protect my heart and be prepared "will it come back? how do we know if it comes back? this is a tricky cancer...can it really be this easy?" We sent out the texts and posted it to facebook and everyone around us was beyond ecstatic...and for some reason I wasn't. Once we got home and Ellie and Richard went to sleep, I sat down and read all the facebook messages and texts. I saw Ellie's face all over facebook with people shouting His praises. It reminded me of a car accident we were in one Christmas day B.C. (before children). It happened so fast and it was so scary and so many people swooped in to help, that I didn't really cry about it until much later than afternoon at Richard's mom's house. He wrapped his arms around me then and held me, and now years later, he still knows how to comfort me. Hearing that her fluid was clear wasn't scary, but it happened so fast and was then followed by a ton of paperwork to start the next phase of treatment, and then more bloodwork. Then it hit me...He did it. He used us to share His power and His ability. He told me He'd heal her and He did. I cried and praised. We had to head back to the hospital that night to start Ellie's next round of chemo. Richard and I finally had a chance to talk and share and then went our separate ways to our separate couches.
So far Ellie has been through 2 days of this 5 day chemo treatment. Today was by far the best day she has had inpatient. She has an appetite despite the chemo, its not an appetite for the room service food, but we'll take it! The nausea meds are doing great at keeping her eating, and giving her nice long naps!
Daddy's with her tonight, while I will enjoy the nice big bed...hope I can sleep without the noise of a hospital :). We are on the countdown till we get to go home. Our doctors here are chatting with UVA oncology to warn them...ok prepare them for the princess' arrival. We don't have a firm "go home" date, but I would suggest not sending anymore mail to us here in TN, since we hope to be gone by the end of the week.
Ellie's treatment plan still stays the same. We did meet with a radiologist, however at this time, it is not something we will be doing. As I listened to him tell us all the statistics of the "world" and the lack of statistics about Pineoblastoma, I knew this wasn't for us right now. (ok...while I listened to what I could understand...the rest of it was German to me) I prayed for God to lead us to the right choices and I believe He did. Ellie's cancer is responding so well to chemo that we aren't going to mess with a good thing. Also her age is a big factor. When we first talked about radiation, I felt sick and scared listening to the side effects that could happen if we started radiation now, but then our little miracle happened! Thank you all for your prayers. I truly believe God performed a miracle in her life....He told me he would months ago. I love that this miracle has brought many people together to rejoice and be amazed at just what God is capable of. While we still have a long road ahead of us, this is a huge step. Please continue to pray for Ellie's appetite and good mood, and our travels home...and don't forget to tell Him "Thank You".
"Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
Prayers, Praise and Pink