12/18 what started as a pretty normal day of appointments and therapies ended much differently. I had messaged our brain tumor team to see if they could take a look at Margot. She had been throwing up a bit more the past 2 nights/early mornings and it was getting a little concerning, especially after seeing her MRI results and just coming out of a G tube surgery. Her CSF findings had also come in the past weekend with tumor cells present, which was not good news. I noticed that morning that she had been tilting her head to the right and mentioned that to them. I could see alarms going off in their heads and then Dr Bagchi ordered a CT. My stomach was flipping and my legs turned to complete jello. Riley had just left for Florida on Sunday to check on the horses for a few days before the anticipated surgery on Wednesday. I called him and told him to book at flight asap and that things seemed really scary. I honestly can’t imagine his fear and pain while trying to get back to us because I know how I was feeling and I was holding her in my arms. Margot was so brave for her CT scan, as she always is. She’s literally the most brave and tough little girl you will ever meet. I’m not just being biased. She is the definition of determined.
Almost too quickly after the CT scan, our doctor and nurses piled into the room with me, asked me when Riley would be here, and held me while telling me that Margot’s disease has spread too quickly and too much, surgery was off the table, and that they can not cure her. I obviously was not processing this and still have not processed this but they admitted us upstairs to the hospital and I waited for what seemed like days until Riley arrived at 10pm. We held her all night and woke up with a lot of questions, but mostly just “why Margot?”
12/19 We spent every second with Margot. She was ready to get out of bed and walk in her walker to the playroom to play with her brother, grandparents, and aunts. We had a fun morning, knowing that another meeting with our oncologist was coming at noon. In the afternoon our music therapist, Amy, came by. She always makes us cry when she sings with Margot but this time we sobbed. Riley’s nickname for Margot is baby red bird, because she used to call for a baby red bird in a nest on our front porch in Louisville. We told Amy about the nickname and she immediately started playing Three Little Birds on her guitar 😭 she played some of Margot’s other normal favorites: Mr golden sun, you are my sunshine, and “hello Margot” which she sings every time.
Dr Bagchi and our sweet nurse, Madison, came to talk to us and our parents. She reiterated everything to them that she did to me the day before. We told her that we agree that we do not want to harm Margot with more surgery and harsh chemo that will only buy her a few miserable months. But we also didn’t want to give up on her. And we know that Margot is not ready to give up. We agreed to keep Margot comfortable at home on dexamethasone through Christmas as well as an oral chemo that she will get daily through her G tube. It’s a low dose chemo, so the chances of it doing much are slim. But there is still a chance, and we will hang on to any bit of hope left that we can. After Christmas, we will wean her off the dex as that is not a long term option for her little body. We will see how she is responding and if she seems to be doing okay we will reevaluate and possibly do another MRI, in hopes that we get our Margot Miracle.
If you pray, please pray for Margot and for us these next very hard days, weeks, hopefully months. If you send good thoughts and wishes, please send us a few. She just doesn’t deserve this. Thank you all for caring about Margot so much and for rooting her on. We will keep you updated. 12/20 we will take her back to our Memphis rental and spend as much joyful quality time as we can with our families and with Margot 💜
