Well we have almost made it through round 2. I had such good intentions of posting another update since our initial one last week, but things have been so busy. Every time I thought I’d have time to add an update, something always happened and it never worked out. The morning after the last update, I woke up to a text message from my mom sharing a link with me. The links was about the Bible numerology code number 7 and how the number 7 is significant in the Bible because it is the number of spiritual perfection. This number is stamped on every work of God including nature, physics, chemistry, and even music. It was a very interesting article. And it made me smile and think there is no coincidence that Cade was born on the 7th day of the month. I’ll try and share the link to it at the end if anyone has any interest to read more.
This cycle of chemotherapy has been very different from his first. In a good way. Our first round, he was really feeling the effects of the chemo by Wednesday as he had 4 of the 5 drugs in his system by that time. He had been throwing up frequently and was exhausted by Wednesday, sleeping most of the day. That is what I anticipated to be the case this time as well. But it wasn’t. He had not thrown up at all at this point in the week and was still full of energy when Wednesday came around. This continued on through Thursday and even Friday. It was great to see his little body handling things so well this time around. He was full of energy. Every morning we had our same routine. He still loves to go down to the Cafe in the lobby first thing in the morning to see if they’re open. Then we go outside to peek over the fence at the construction workers to see what they’re doing. On the way back to the room we usually stop and see the fish, pop in the gift shop, and/or go to the resource center to exchange our movies for new ones. Or as is usually the case- re-rent Boss Baby. We had an eventful week as well. Starting with me snapping his lines one morning when we were outside looking at the construction site. The IV tubing must have been stuck and I went to lift him up on to my shoulder to see over the fence and as soon as his feet left the ground, I heard “snap!” Oh %#@! I looked quickly with dreadful anticipation and was relieved when I saw it was just a snap from a tiny connection piece of the IV tubing and not his actual line getting broken or yanked out. Phew!! That quickly cut our outside field trip short, I locked his line and we flew back upstairs so they could connect a new IV set to him. Then of course we had to go back down to see the construction workers!
Chris and Rylan came up again for the weekend like we had done before. Chris stayed at the hospital with Cade and I checked us in at the Ronald Mcdonald House where Ry and I stayed together to have some special time to ourselves. It was a nice weekend. Ry and I got to go to the hospital a few times to visit with Cade. Saturday as we were leaving to get back to the house for dinner, Cade was breaking my heart. He was upset that I was leaving and kept saying “please don’t leave me. Please don’t go momma, I want you to stay, please.” I just assured him that daddy wanted one more special night with him and that I promised I would be back the next day. It wasn’t actually until Saturday evening that Cade began to have any vomiting with this round. But it continued on through Sunday morning. Any time he tried to take a sip or a bite of anything he would instantly throw up. The team discussed it in rounds and decided to add Hydroxizine back in to his daily meds as an additional nausea medication. It definitely worked. After the first dose late that morning he was able to hold stuff down again, which was great. Sunday Ry and I were able to use the passes from the RMH to go to the Milwaukee Zoo where he got to see their dinosaur exhibit. It was a great afternoon together. Sunday was also the day in our treatment course that they hope to see him clear the methotrexate drug from his system. They check the levels every 24 hours after receiving the drug. Last round, it took Cade until Tuesday to clear it to the required less than 0.1 level. This time, Sunday’s level was 0.1 on the nose. But it still had to be less than 0.1. They decided to re-check it later that afternoon at 3pm to see if it had gone down any. We were packing up the entire room while praying we weren’t jinxing ourselves. Haha. I had set aside PJ’s and a change of clothes for Cade and myself just in case. The resident walked in around 5pm and said “how does 0.09 sound?!” He barley cleared it, but it technically was less than 0.1 and since he was eating and drinking again she was good with letting us discharge over to the RMH! Yippeeee. So off we went that evening. It was so great to get out 2 days earlier than before.
Monday Cade and I went back over to clinic for his appointment. They drew blood, changed his central line dressing, and gave him the 2nd dose of the Vincristine. His red blood cells were low at 7.6, but they like to wait until they’re symptomatic. I said he was definitely feeling fine today as he’s been running up and down the halls of the RMH, playing on the playground, doing the stairs, etc. They arranged for him to come back Thursday morning for another blood draw and a blood transfusion and instructed me to call if he became symptomatic before then. By Tuesday night he began to get very irritable and this continued Wednesday morning. You could tell he was tiring easier and just didn’t feel good. So Wednesday afternoon we went over to the day hospital and spent the afternoon there for a blood transfusion. His white counts are back to zero so because of this, he is beginning to get the mouth sores and mucositis unfortunately. I’m praying he won’t get it as bad as last time. 🙏🏼 🙏🏼 🙏🏼 They allowed us to come back over to the RMH after his transfusion since he was drinking enough and his pain seemed well controlled by the morphine, but how long we will remain here will be dependent upon how bad his sores get. If he isn’t eating and drinking enough and if the pain cannot be managed by the oral morphine I have here with me, then he will get readmitted for better management through IV medications and fluids. They don’t want him going too long and losing to much weight because then he will have no reserve at all, which we need him to have. So our agreement is to see how he does through the afternoon today. He woke up several times last night in pain and today has been a constant battle trying to get him to eat and take his medications. Poor thing has so many medications he has to take, I feel like I’m constantly fighting him about them. It’s worse when he doesn’t feel good, so that’s one of his signs. That and just being overall irritable and tantrumy is when I know he is feeling crappy. If I can’t get him to eat anything or he decreases on his fluid intake, they want us readmitted by later this afternoon. We will take it hour by hour today and pray for the best. Rylan and daddy just got here today. I’m praying that seeing Rylan will perk Cade up a little and get him to eat and drink more. I just wanted them to have at least part of the day here together getting to run around and play without being connected to IV tubing and a huge pole. But in the end it’s what is best for Cade and even though I know he doesn’t want to go back to the hospital, I know it is inevitable. It’s just a matter of whether it ends up being today or tomorrow. Please keep Cade in your prayers that this stupid mucositis will be very short lived this time around and his healing will be quick and efficient and he will be back to being pain free and wanting to eat and drink within a couple days!! 🙏🏼 ❤️
Thank you so much for all the love that was sent to us these last couple of weeks. We got to be part of the Lemonade Brigade during the McHenry car show, they sold lemonade in honor of Cade, which we are so grateful for and Rylan was thrilled to get to help sell the lemonade. He rocked it! ❤️ Thank you for all the thoughtful messages and text messages checking in. And to all that have visited us this round. We got to enjoy a very special visit from Auntie Jackie (we miss you already!!) and Kathy as well as visits with Christine while at the hospital, and from all of his aunts and uncles while we were here at the RMH!! It was so great seeing every single one of you! We love you all! xoxo
Our Warrior Journey 