We have been home a few days now and it has been so great for Cade!! Sunday when we got home we spent a good amount of time outside, Cade slowly getting around with help. There was a moment that melted my heart and made me wish my phone was in reach as to capture it in picture or video. But I just relished in it. We were standing in the grass together, I was holding both of his hands. He kept leaning back for me to lie him down in the grass. I wasn’t sure how this would feel on his incision, but after a few times of this back and forth, I finally gently lowered him all the way and let go. He layed between my feet in the grass, the sunshine beaming on him, eyes closed, and a smile from ear to ear as he just laughed and giggled. It filled my heart so much. I was so happy to have him home. And I knew he was beyond happy to be here as well. Him and Rylan played outside and inside together the rest of the afternoon and I know they loved every minute of it. Rylan was so excited to race us upstairs when we got home and show his brother the welcome home sign and balloon that he had made for his bedroom door.
I was very nervous about our 1st night home and how it would go. I longed for a ranch style house as bedtime drew near. We have a first floor master, so the boys bedrooms are upstairs and ours downstairs. Cade had gotten so used to coming down the stairs in the middle of the night or early morning once he had woke up. We put the baby gates back on the stairs (which he of course knows how to open) and told him to be sure to call for us if he needed us at any time in the middle of the night or when he woke up. I wasn’t sure if we’d have vomiting or if he’d try to get out of bed and he was still weak getting around on his own, so all of this made me nervous. I didn’t want to sleep in bed with him because he needed a good night sleep in his bed just like the rest of us. Probably even more. I knew this was the right decision when I was trying to snuggle and kiss him as I put him to bed, and he politely said to me “can you go out of my bed now please.” Point taken. Hah. We decided it was best if one of us slept upstairs in the guest room to be close just in case. Chris lovingly let me sleep downstairs to try and get a good night sleep. Our first night was great. Cade slept through the whole night. No vomiting. We are no longer waking him to give him meds through the night, which is great, but I was a little worried about whether this would effect him or not. Thankfully not. At least not yet.
Yesterday was another good day. I was so excited that we had gone so long without him vomiting (not even on the car ride home, thank you God!). He was walking around more, and trying to do so on his own, despite how adorably wobbly he is. Played upstairs with Ry a good portion of the morning. Even walked up and down the stairs holding my hand and using the railing. He woke up from his nap a hot sweaty mess (because he insisted I cover him in his down comforter and turn his fan off. Ok!) and was upset. Shortly thereafter, he did end up throwing up. I was so bummed. We had made it so long with nothing. He was so excited for dinner, but I had to fight with him to give him his meds, so by the time it was dinner time, he wouldn’t eat and ended up going to bed barley eating anything. He thankfully had another decent night sleep. Chris said waking up asking for something to drink one time, and another time to be covered. But not to long after being up he threw up, and then again a few hours later. In the hospital the Ativan was scheduled, but going home they ordered it just as needed. I think that, and not taking anything through the night has caught up to him a bit, so I gave him Ativan a couple times today trying to stagger things a bit for better coverage and relief. It is truly amazing how a couple drops of Ativan makes such a big difference for how this little guy feels. He was eating waffles, walking all around. We went outside and I helped him ride one of his toys to the end of the driveway and back. At one point he asked me if he could run. Ummm….no. I made him hold my hand if he wanted to try and run a little bit, and he did for about 5 seconds. All this excitement and movement could have played in to the 2nd time he threw up. Maybe. Who knows. But thankfully that was it for the rest of the day and evening. Dr Ruge had said that he likely could throw up once a day, maybe twice. So I just continue to monitor him closely for concern. But as great as he did today with getting around, I stopped worrying so much. Chris had to actually make him get off the chair tonight b/c he had a bow and arrow toy and was practically upside down looking like he was going to fall on to the floor any second. Resilient.
Tonight we traded, I’m upstairs in the guest room. Hoping Cade gets another good nights rest and that tomorrow will be a day of less vomit. My sister is coming to spend time with him tomorrow while Chris and I go back to Lutheran to meet with our oncologist to discuss the results of the pathology report from St Judes and learn about the types of chemo drugs that will be needed and get an idea of what his therapy schedule will look like. I’m praying that the report will show that it is NOT an aggressive form of medullablastoma (the path reports at Lutheran did not show it to be) and that it will be the most favorable outcome possible in terms of the detailed type of tumor and necessary treatment. Praying! I’ll be honest, in a perfect world I’d still be praying that this pathology report disagrees with the original diagnosis and says it’s the benign astrocytoma like Chris had as a child that we were hoping it to be. A girl can dream, right?! But I know that is highly unlikely, so I’m trying to plan for the more realistic version of this meeting. That it is a third confirmation of the same diagnosis, but hopefully in the best possible outcome there could be. Please God.
I pray for the week to get better and better for this sweet boy. For his strength to come back more and more each day, and the inflammation from surgery continue to decrease and heal, leading hopefully to less and less vomiting. I cannot thank all of you enough. Everyone who follows his caring bridge page to see how he is doing. Every text, email, phone call. Every message of love and support. The hundreds of ways that so many of you are reaching out to help us in all sorts of ways. I know this is not my first thank you to some, and it will not be my last. The love, support, and generosity of everyone is overwhelming and it brings tears to my eyes often. We couldn’t have and wouldn’t have made it this far without your love. Thank you! From the bottom of my heart, thank you! God bless you. Please continue to keep our strong boy in your prayers for continued strength and healing. ♥️
Our Warrior Journey 