First and foremost, I have to say that we made it through our week of baths and endless laundry!!! Whooo hoooo! We celebrated with a lot of splashing and a high 5 during our 21st and final bath of the week on Friday night. I’m seriously not making this kid get in the bathtub again for like a week! I don’t even know where to start with this one, I’m so lost on my days and behind on the updates. Wednesday he received his cells. It was around 3:30pm and just as the BMT told me, it was very anti-climactic. Haha. They ran in over 30 minutes and that was it. They use a preservative when the cells are frozen and said that it can sometimes cause the cells to have a smell similar to creamed corn that some people can smell while the cells are infusing. Oh did they ever! Thankfully his cells went in over only a half hour. I don’t know how older kids who get infusions over hours tolerate it. The smell continued afterwards too and when I asked, the nurse said you can smell it for a good day, sometimes two. I could smell it on his breath. It was so weird. That evening we were laughing because between the creamed corn smell and his gas he had, he was killing me! Stinking me out big time, but he had to have me right by him in his bed so there was no escaping it. Lucky me! Haha.
They had increased his feedings by Tuesday and he was having a hard time with the increase in volume and the rate because every time they had to give a medication through his tube and flush it, the poor thing would vomit. So we went from 4 cartons down to 3 cartons and backed down on his rate as well to what he was used to at home. It put his feedings going over a longer period of time, but at this point he is hooked up the the giant pole of IV tubing anyways, so it doesn’t really matter much from that standpoint. The chemo has definitely begun to hit him. By Thursday he was still having a lot of nausea and vomiting as well as diarrhea. Going down on the feedings seemed to help for about a day, but then when the diarrhea began to continue and continued through the night where he was waking up to go to the bathroom 3-4 times a night, I began to wonder how much was feeding intolerance vs. mucositis beginning. We have always dealt with mucositis in his mouth and him getting mouth sores. But they always told me that it can happen anywhere throughout the entire mucosal lining and so when kids complain of their tummy’s hurting, they assume that it is the mucositis occurring internally where we can’t see it in the GI tract. Rounds are always great. All of the doctors and multidisciplinary teams get together to discuss each child every morning. Talk about what is working and what isn’t. Trouble shooting whatever the symptoms or issues are and seeing what changes can be made to help resolve them. Nausea medications were increased in both frequency and doses, additional ones added. Still more available on an as needed basis for continued breakthrough nausea and vomiting. Friday he began complaining of his stomach hurting, but he would usually either vomit, pee, or poop and the complaints would resolve so no one was overly excited by that quite yet. He was not feeling great though, I could tell because he was sleeping again by 9am.
Friday was full of wonderful surprises. Around 11am as Cade was sleeping on top of me in the bed and I was watching a movie and finishing my coffee, when the door opened. My eyes were fixed upward expecting to see one of the nurses walk through the door. When all of a sudden I caught a buzzed little head 2 feet lower zip through the door. It was Rylan! He and Chris decided to come up and surprise us for the afternoon. Cade woke up right as they got there and instantly lit up at the sight of Rylan. He sat up and began talking to him and telling him stories. They were sitting over on the couch together within minutes talking and watching something on the iPad together. It was heartwarming. Especially after seeing the toll that this round of chemo had begun to take on him. Rylan was the medicine Cade needed. Soon after their arrival, they began rounds. Which actually reminds me of Thursday when they were doing rounds. I had gone out to get the laundry when they came in. The nurse Jess came down to get me and let me know they were starting rounds. She told me that Cade had said “are they starting rounds? Oh no! Mom is gonna be mad if she misses rounds!” So she ran down to get me. Haha. He is too cute. Rounds began Friday as Chris and I both listened. Cade is back to getting growth stimulating factor since getting his stem cell transplant to help his body spit out new baby fighter cells. This can falsely elevate the WBC because of all the new immature cells being created. They explained this as they said his WBC was 2.6, having been only 0.7 the day prior, and then went on to say that they anticipate he will bottom out with his counts within a couple days so today would be a good day to…and I figured they were gonna say to venture down to the lobby and walk around, but as I say this they say- a good day to go on a day pass. Huh?! Like actually leave the hospital? I say. They said yes! Get out, get some fresh air. You can go on a 4 hour day pass. Unfortunately it was gray and rainy outside, otherwise it would have been so fun to go to the zoo. We didn’t have many options, but we still took advantage and off we went out to lunch and ice cream. Rylan carrying the backpack of Cades IV fluids and Cade carrying his backpack full of dinasaurs. Cade of course didn’t eat much, but he still enjoyed the fresh air and running down the sidewalks with Rylan and playing in the water of a fun fountain outside of the restaraunt. It was a perfect afternoon, but after a couple of hours Cade was ready to come back to the hospital and lay down. Chris had a couple of friends surprise him that day, they went to our house to do all the yard work and things that needed to be done. Trimming bushes. Changing the oil on the lawn mower. Amongst many other things. This incredible kindness allowed Chris to be here and spend the day with his family. Thank you Andre and Jeremy! The fresh air was good for Cade, he was passed out almost the rest of the afternoon and evening until bath time. He sadly ended up having to have his dressing changed after that, but Miss Brooke let him go to the secret toy closet on the unit and he came back with some fun little goodies which kept him awake and excited for about an hour and then it was bedtime.
By Saturday, the tummy pain was remaining a constant and Cade was asking for a warm pack for his tummy to help it feel better. Saturday night he was still up frequently through the night with vomiting and diarrhea. I had gone back home for a baby shower that morning for one of my good friends. It was incredibly hard to leave and I was playing it by ear making a complete last minute decision based on how Cade was doing come Saturday morning. I actually thought I was not going anywhere that morning when we woke up to learn that his feeding tube was not flushing. It was clogged. Which was not good. If they couldn’t get it unclogged then it meant he would be going back down to IR to get a new one put in. There were 4 nurses in his room at 7am toggling ideas around for what to do and try. One of them got a steaming cup of hot water and dunked as much of his tube in it as she could safely do and then removed it after about 30 seconds. It worked! They were able to flush it and it has been fine ever since. Thank goodness!!! So I ended up deciding to go home and he had a special sleepover with Grandma Kathy. Having total mom guilt for leaving, but knowing at the same time that I needed to leave if only for a day. To see some of my friends. Go home and sleep in my own bed. Snuggle with my Rylan. Kiss my husband. I was glad I went. It was hard. I was there, but not really there at the same time and many of them could tell. I was very emotional, tears coming out of no where more times than I anticipated them to. But the hugs were needed, even though I found myself pulling away sooner than I would have usually in order to keep it together. And the girl time was helpful. I was happy that we all went out together afterwards to see our friend Teri’s beautiful new home (only a mile from mine!) and then stopped at “bar Winters” to all have a drink and stretch our time together a little longer. They left to continue on, knowing that I was exhausted and needed to just be with my family a little bit that night too. Sunday morning Rylan and I both slept until 7am, which is unheard of in our house for those that really know us. We enjoyed a Starbucks date with my sister and niece, and then I dropped him off at Grammie’s house so that I could return to the hospital. This is always hard for me and I am tearful on my drive back. Finally being alone and able to break down. Hating that I have to be doing this. That I have to be leaving my 4 year old to return to my 3 year old in the hospital when I instead should be enjoying the day with them together at a park or doing something toddlers like to do. Watching them play and laugh together like normal kids. Normal brothers. But no. We don’t get to do that right now. Soon, I tell myself. Next summer and next fall we will make up for our lost time.
I got back to the hospital in the middle of the afternoon. Cade and Grandma had been having a pretty good day together full of puzzles and sticker books. Good activities. I was happy to see this. He was still having vomiting and diarrhea so I talked with the nurse and doctor and we decided to hold his feedings over night and see how he did, still trying to determine if the underlying issue was mucositis. I had a gut feeling that that was exactly what it was. His counts had bottomed out and he has no white count at this time. By 6pm he was exhausted and starting to feel pretty crummy and he was in bed asleep for the night by 6:30. He felt warm and his temperature was running 99.9. It went down over the next couple hours as I was crawling in to bed. By midnight he was asking that I come in bed and snuggle with him. He was on fire. By 1am we were doing blood cultures and lab work and starting IV antibiotics for a temperature of 103.3. It was a restless night for us both. Lots of in an out due to all the antibiotics being started on top of all the nausea meds already scheduled. While he didn’t get up at all through the night with diarrhea, he was complaining of his tummy hurting and had the warm pack on his belly all night. At one point, it wasn’t enough and we ended up giving him a dose of morphine for the pain. He threw up only once through the night and he made me laugh. Even when he is miserable, he still somehow manages to be adorable. After throwing up, he said to me half asleep while still sitting up “I pooped my pants. I had a juicy fart mom. Do I still have a pull up on?” I replied yes, he did. And he said “oh, ok” and layed back down and passed out. One of the nurses had seen me in the hall earlier last night and said to me how cute Cade was. She said that they see a lot of kids here, but he truly is just one of the cutest ones ever and how she just absolutely loves to hear all the behind the scenes talk from all the nurses about him. I told her how much hearing this just warms my heart and of course made me cry. She hugged me and told me to hang in there, saying “we don’t want you here, but we are definitely going to miss him when you guys get to leave.”
This morning you could tell that my sweet boy still is absolutely miserable and exhausted. He moved over to my pull out bed for a change of scenery and has since relocated from there, to the chair, back to his bed, back to me on the chair just wanting me to hold him, and now he is sleeping on the couch. While he was sleeping on my bed earlier, I decided to run out to the kitchen to get myself some coffee. I was gone for 5 minutes. Of course of all times, this is when he wakes up. I am casually walking back to the room door when I hear him screaming, crying, calling for me. I open the door to see him standing at the bathroom door holding his IV pole in tears as he’s standing in a puddle of pee. Crying and telling me he had to go pee. I wasn’t here to help him. He didn’t make it. My heart just sank and I wanted to cry. Poor baby. I cleaned him up, the nurses came in and cleaned up the floor. I just hugged him and assured him that it wasn’t his fault. Don’t be upset, it’s not your fault baby. I wasn’t here. Accidents happen. Had I been here, you wouldn’t have peed your pants. It’s ok. It’s not your fault. He calmed down and got changed in to clean clothes and snuggled on the chair. This is why I rarely leave him by himself. I know it’s not my fault either, but it still was absolutely heartbreaking to walk in and find him like that. He continues to complain of bad tummy pain and has had another dose of morphine to help with the pain. The doctors checked his tummy because they said when the counts are low they can get what they call a neutropenic colitis where the gut lining is inflamed and very painful. It didn’t bother him to have his stomach pushed on, which was great, showing that he did not have this. He does officially have mucositis. We thankfully aren’t seeing any sores in his mouth right now, they just seem to be in his lining. I personally hope it stays this way. One spot is bad enough. We are stopping feedings and starting him on TPN and lipids for IV nutrition as they don’t anticipate his counts to start to recover for another week yet. And unfortunately until his counts recover and his body takes on the ability to fight off the mucositis, it will not start to get better until then. His temperatures are sitting around 100. Better than 103. But he still feels awful. It’s a day of sleep today from the looks of it. Sleep and hopefully some healing. He has gotten blood and platelets over the last couple of days. Our main goal right now is keeping him comfortable.
Please continue praying for him and for our family. We appreciate every single kind gesture being sent our way. Which reminds me that I never mentioned how amazing the fundraisers were from the other weekend. The turn out for the motorcycle ride was incredible. Cade loved watching all of the videos of it, and seeing the amount of people riding brought tears to my eyes. I can’t even express how grateful we are for everything that everyone is doing for us. There really are no words. Thank you doesn’t even seem like enough. But thank you! Please continue to reach out. I love every message, every text. Don’t ever feel like you’re bothering me or us. It may fall on a busy day and you don’t get a reply, but please know that your messages and words of love or encouragement are felt deeply and they mean the world to us. It is all of you who give us the strength to push through this nightmare. And it is all of the prayers from his prayer warriors that give my baby the strength to endure all of this and continue to fight like he is. So please, please, keep them coming!! We love you all so much. Thank you from the bottom of our hearts. ❤️ 🙏🏼
Our Warrior Journey 