Pressing On
by Erin Gourley
It’s the start of a new week and it’s going to be a good one. Last week was well... a lot. We’re leaving the ICU today to go back to the floor!
We discovered that Lucas’s seizure last Monday was not in fact a febrile seizure. He had a status epileptics seizure which was why he lost consciousness for so long and required incubation to breathe with the tubes. Neurology has been involved and they are trying to determine what’s going on. They identified a small inflammation in the lower part of his brain but there’s a lot of unanswered questions. We pray this is not anything significant and this resolves itself. He’s had 3 MRI’s last week and likely another one at some point this week to stay on top of this.
When Lucas was extubed and came to on Wednesday he was clearly out of it and reactive. He was given pain medications and narcotics to calm him down. Sweet boy was very confused and had hallucinations from the drugs. There were episodes that were hard to watch and handle. But, I knew Lucas was in there and just fighting to feel like himself. There was one intense yet beautiful moment. Lucas was screaming that he didn’t want the doctors or nurses there because he thought they would hurt him. I held back my tears and finally just picked him up and held him like a little baby and told him ’they won’t hurt you I won’t let anyone hurt you'. He calmed down and I had the same feeling I got when I held each of my newborns for the first time. I sang ‘hush little Lucas’ to him which was a song I used to sing to him but he never lets me sing anymore. He allowed this and melted into my arms.
Friday morning he was out of it again and couldn’t really speak and his head was to the left and he couldn’t really move. The team here was on it and while we thought it was a seizure thankfully it was not. After a few hours and meds he came out of it and the EEG showed it not to be a seizure. We’ll take it right?
This past weekend he’s had a turnaround. Our spirited boy is back. He’s done with being hooked up to wires all over his body and he wanted to play legos. The age 16+ London bus set. I knew he was back. I haven’t let this kid out of my sight and I’ve literally slept right next to his body all week to make sure he was safe. Last night, I moved over to the couch which suggests to me I know he’s okay.
We’re so grateful for Jack who has been another trooper beyond words. He is the one who pulled Lucas out of it when Lucas was coming off the breathing tubes and we weren’t sure it was going to work. On Friday, when he was comatose, Jack talked to him to get some level of engagement from Lucas. Jack’s been so strong and I know it’s so hard for him to see his brother like that. But that’s who Lucas wants to see in his worst of times. And Dylan she’s always jumping on saying she loves Lucas which makes him smile.
Our prayers continue that
- he doesn’t have fevers, infections and now let’s add seizures to the list.
- his counts continue to go up.
- the inflammation in his brain and potentially spine resolve and are nothing to be worried about
- round 3 crushes and kills every single cancer cell in Lucas’s body.
As we all know the past 2 of rounds of chemo haven’t worked. We’re still trying to figure out round 3. We pray for guidance and for our medical team to figure out a protocol that will kill every cancer cell in his body and put hm into remission. I’m even praying for Jesus to grant us a miracle and perform a Holy Blood Transfusion curing Lucas.
This week threw several curve balls at us but we will push forward. We are never giving up on this kid! We believe in energy, light, healing, prayers, and Lucas’s will to beat this.
