Hard to believe we have been home for a week already. That we have been living the unimaginable for almost 3 weeks. That Cade had brain surgery 2 weeks ago. It feels like that was so long ago and yesterday all at the same time. Our amazing little man has been feeling better with each passing day. You can see it in his activity. His playfulness. His laughter. Climbing on and off of the couch and beds. Telling you he would not like your help, he can do it himself. The fact that he gets down from his bed and comes out of his room by himself now shows his progress in it of itself. It was so hard for me not to sleep in his bed with him our first night home out of fear he would try and get out of bed and fall and hurt himself. We still aren’t comfortable with him and the stairs alone yet, so the gates remain up and one of us is still sleeping upstairs in case he needs us. But overall he has been improving every day. He is getting around quicker and even started running short jaunts now today. It lit up my heart. Watching him just be a kid this weekend has filled my heart so much. Friday night my parents and brother were here for dinner to spend some time with the boys. After dinner, when the boys should have been getting in bed, I sat on the steps out back and watched them both have a water gun fight with their grandma and grandpa. I was breathing in the moment. It felt so good to watch. I told myself bedtime can wait. Then Saturday after he woke up from his nap, he and Chris came over to our neighbors house to join us all in the pool. Cade couldn’t get his head wet, but we held him in the water and let him sit on the stairs. The joy in his face and in his laughter was so great. Today we just enjoyed our Sunday. He went on his favorite errand with daddy to Home Depot, played a lot, and enjoyed a little family movie night. We’ve had a few episodes of vomit over the weekend, but it is definitely getting better. Or at least has been better this weekend. Today he had a small amount after the movie ended, but it could have just been to much. We were goofing around, tickling, and laughing a lot! I can’t get enough of his giggle. Like his real belly giggle. It’s heaven.
We saw our pediatrician this past Friday as well. I truly cannot speak highly enough about Pediatric Associates of Barrington. I just LOVE them. The appointment was more so for Dr Kaufman to speak to us. Our dear friend who works there and a couple of the nurses took the boys and entertained them with the fish tank and coloring to allow us to really talk to the doctor. Dr Kaufman was great. He spent a lot of time with us talking about a lot of things. At the end of the appointment he said at any point if we aren’t sure who to call for the answer to something between all the different people we’ll be involved with, to just call him. He will be our middle person and he will figure it out for us. He hugged me as I left, told me that Cade looks great, and to call him if I need anything. We discussed a lot of things, including the need to have Rylan scanned at some point down the road when we are ready. Obviously this is not priority this second, but it definitely is a priority and the very thought of it gives me anxiety and brings tears to my eyes. Please DEAR GOD do not let it even be possible!!!!!! I cannot. I do not know how my mother in law survived this with both of her children. She is one amazingly strong woman, no doubt there. But no mother should have to go through this more than once. God forbid. Please. 🙏
Tomorrow is the start of a new week. Two weeks since his surgery. We will go to Lutheran tomorrow to have a follow up with Dr Ruge and get his stitch removed from where the drain was. We talk often about his tumor. He asks where it went. Like literally wants to know what they did with it. “But where did it go?”, “But where did they put it?” haha. Rylan chimes in often too, explaining answers to his questions. Or reminding him he had a tumor that they did surgery on and why. Cade will touch his scar often too and tell me it’s getting better. Today they wanted to see what a tumor looked like. The MRI pictures were not satisfying, even though it was Cade’s brain, they wanted to see a real tumor. So we googled it and showed them a couple pictures…and then that quickly ended because we all know the types of pictures you can find on the internet. Many disgusting and inappropriate looking ones. So that was the end of that.
Thursday we will meet with the team at Lurie’s Childrens. I still want to call it Children’s Memorial which it was back in my days at Northwestern Memorial. It’s weird calling it Lurie’s. But anyways. We will meet with them and discuss. I’m hoping to walk out of that meeting feeling a little better than when we walked out of our one last week. We were connected with a group on facebook specific to Lurie’s brain tumor families, and then someone informed Chris that there was another group specific even to Cade’s exact tumor, so we joined that one and put a post about our new diagnosis and situation. It has been a little comforting to see the number of people that comment about their story and how many were also children’ under or around 3 and they did not do radiation, did the same type of chemo treatment recommended to us, and their child is doing great or just ended or has been cancer free for this long and is this age now. I think it has helped a little to read these stories, but it’s still incredibly scary. And I have no doubt that the meeting Thursday will be overwhelming to say the least.
We have had so much love from so many family and friends, this entire time, but also in this weekend alone. Thank you. All of you. For the phone calls, the text messages letting me know you’re just thinking of us or keeping us in your prayers. The homemade dinners, snacks, thoughtful gifts or messages shared. The donations. I can’t even get started on that, the GoFund me page had me balling this morning. Even if you feel like what ever it was that you did was so small it wasn’t significant. Please know that it WAS and it IS. And it means the world to us. Thank you for keeping your prayers going! You all are his warriors. His prayer Gods. Keep up the great work in helping to protect him! ❤️
Our Warrior Journey 