Well the time has certainly gotten away from me. It has been busy. Cade received the last drug of his cycle, Methotrexate, on Thursday. He did well with it overall. We haven’t seen any mouth sores at this point, so prayers that he maybe won’t get any this time around 🙏🏼 This particular drug is very hard on the body, so they have been doing blood draws every day to check the methotrexate level. Each day it is supposed to drop down to a certain value. The last day they check, 3 days after it’s given, if it is at the lowest then they consider the drug cleared from the system and the patient can go home. He had been clearing it great, so they were anticipating that Sunday after they did the last level, it would be where it needs to be at less than 0.1 and we would be able to discharge over to the Ronald McDonald House to get out of the hospital for a few days. He’d have to go back to clinic Monday to receive his 2nd dose of Vincristine. He’ll then receive the 3rd dose of Vincristine another week later and this will totally complete cycle 1 of chemo.
Chris was off this past weekend, so he and Rylan came up Friday for the weekend. We had checked in to our room at the Ronald McDonald House across the street from the hospital and Chris stayed here at the hospital to give me a break while Ry and I slept over at the house Fri and Sat night. It was nice because it allowed us to come back and forth to see Cade while having somewhere for Ry to go back to and be wild or just get out of the hospital room vs. being stuck here all day. Plus Cade just lights up when Ry walks in, so he needed this too! Ry loved the RMH. I hate their rule of no eating anywhere except the kitchen, not even in your room, because if you know my kids they LOVE to snack. So I feel like we basically hung out in the kitchen all weekend. Haha. Ry and I talked a lot about our situation as he is having an incredibly hard time being away from me. Chris is at the house mostly with Rylan to keep routine normal between work and daycare. This is great, but he doesn’t see me for long periods of time and I think that is becoming difficult for him. He needed the weekend with me. Every night at bedtime he’d tell me he had such a fun day with me. One night we talked about why I have to be here, why daddy can’t be here instead, and why he can’t stay here with me. I think all the nerves of everything going on must have got him worked up in addition to him knowing after Sunday he wouldn’t see me again for a while again because he woke up Sunday at 5am saying his tummy hurt. He ended up throwing up shortly after. Of course I was freaking out. Was it just nerves? Did he eat something that upset his tummy? Was he getting sick with a GI virus? Cade was possibly coming to stay in this same room later that day so I was paranoid. I stripped the beds, washed all the sheets. Wiped down everything. Quarantined him to the room until we were ready to leave for the safety of other children in this house and told him he couldn’t see Cade or go to the birthday party later that day. Sunday started off exhausting. And well it ended pretty much the same. The rest of the morning he seemed fine, eating and acting completely appropriate. Chris and I decided it had to be nerves. His world has also been turned completely upside down and he keeps thinking that when he goes, he’s never going to see me again. Everything finally just got to him and literally made him sick to his stomach. Poor baby. I took him to see and say bye to Cade, while sanitizing his hands every 5 minutes just in case 😉 We ran errands and he took a nap. Also something he desperately needed. Sleep. He’d been here all weekend not napping, not having space to have rest/downtime, staying up much later than normal, not sleeping in his own environment. We decided to go home to spend some time together and so Ry could go to the birthday party he was invited to at the bowling alley. He was totally looking forward to this. He had a blast at the party running around and being crazy with his friends. When it was over I had to hurry back to the hospital. We were anticipating getting to leave to the RMH when his level was back that afternoon and Chris would have to help me get everything over there and then head home to be with Rylan.
My mom came over to stay with Ry until Chris could get back. It was heartbreaking. It took me 30 minutes to leave. He wanted to snuggle with me a little bit, then he wouldn’t let me go. He was clinging to my legs and body as I tried to get through the house and out to the car. He looked so incredibly sad. I was holding back the tears. I told him it was ok to be sad, I was sad too, and that it was ok to cry if he wanted to. We were trying to distract him, talking about riding his bike, going for a bike ride with Grandma after I left, watering the flowers and garden, etc. It didn’t matter. He was pleading for me not to go. I told him I had to. Told him he should enjoy the fresh air and doing something fun for Cade. That if Cade could, he would absolutely love to be playing outside riding his bike and running in the grass and not stuck in that room. I tried to explain to him that Cade needs me and that if it was him in the hospital, I would be doing the same for him. He was sobbing and as we were hugging he asked me “when is it gonna be over?” Through a cracked voice I replied to him “not for a long time baby.” My poor mom, he wanted nothing to do with her. She’d try and comfort him and pull him off me and he’d swat her away saying he didn’t like her and didn’t want her here. As I finally got in the truck to pull away I saw him running out from the garage holding his little blankie hysterically crying as he ran towards the truck. I stoped and got out. We just hugged, and I started balling. It was so hard to peel him off of me and start to get stern explaining that I had to leave. I had to. But I promised that it was not going to be the last time he saw me. He was going to see me again. It was painful. My heart ached as I saw my mom stand her distance to give him the space he needed, and watched him pace the grass in our yard on the side of Chris’ work truck. Trying to be tough and hold it together, but seeing the tears still breaking through as he clung to that blanket and paced. It was so awful. I cried at least half way back to the hospital. This was the low of my weekend. My friend Amber likes to end our conversations on her “highs and lows,” and that was my low. To make matters worse, on my way back I learned that Cades level wasn’t low enough and he couldn’t go to the RMH after all. Awesome. Add that to my lows. They would check the level again at 6am the next morning and we’d hopefully go Monday. One more night in the hospital I figured, not the end of the world. Well his level didn’t clear enough the next morning either. It has to be less than 0.1 in order to be discharged. Monday morning his was 0.13. I couldn’t believe it. At this point I was so frustrated! We were stuck there another entire day and night.
My highs of the weekend, however, were hanging out with Rylan and the fact that thankfully Cade had begun to feel better and began eating! That was a big plus! It was so great having Rylan be able to pop in and out of the hospital and getting to see how Cade transforms when he enters his room. I mean he’s a different kid. It’s so good for him. He misses his brother and Henry so much. Sunday when we went to the room to say bye to them the team was in the middle of rounding. They were just telling me how he had thrown up a few times and just doesn’t seem to be feeling well…as they’re talking to me telling me this, Rylan passed on by and entered his room. You just hear Cade light up and yell in his adorable munchkin voice “HI RYYYYY!” And he repeated this about 4 times. Then he popped his head up from the couch where he was, saw me, and yelled “Hi momma!” The team just started laughing. This actually became a regular thing over the last few days, the staff being caught off guard by Cade’s humor and quirks and just busting out laughing. During rounds yesterday we were playing in between the 2 doors that lead in to his room. He had “trapped” me. Well when any of the staff, let alone the entire team for rounds, gets near him he shys away and tells them he doesn’t want them looking at him or being there and asks them to go away. So normally, he didn’t want to partake in rounds. He let me go outside the door in to the hall and he stayed in between the doors. In the middle of the resident giving off her report on Cade, Cade is knocking on the door to me and saying “there’s nobody here” in this hilarious mischievous voice. Again, a round of laughs interrupting rounds once again. We got to take a day pass for both of our sanity yesterday too. They gave us a backpack with his IV fluids in it and let us leave for a maximum of 4 hours. We left and came over to the RMH so he could check it out. He walked by himself all the way there through the skyway bridges, which is pretty darn far! Just holding my hand walking down the hall while munching on his chicken quesadilla he had in his other hand. Cutest thing ever. Then he had an absolute meltdown the entire way back. You know, just to balance it all out (eye roll). I think he was just angry at me that we had to come back. And probably very overtired. When we got back in the room I went to get water and saw our nurse in the hallway. As I was telling her and the nursing student with her about our adventure, we all hear cade yell from his room to them “Hiiiiii nurses!” They just started laughing. This kid seriously cracks me up. He seems to be quite the hit on the 5th floor!
We both got a good night sleep last night, with the exception of him peeing all over in the middle of the night when he told me he was done peeing and I took the urinal away and pulled his pj’s back only to feel them all wet and discover he was in fact still peeing. I mean what do I really expect from a half sleeping toddler zombie who’s standing up peeing in a urinal at 1am?? After that we slept good until his usual rise and shine time of about 5:30am. We did our typical walk to get coffee, play in the play room, play on the iPad, etc. and then learned later in the morning that his level had finally dropped below 0.1 and we were going to get to be discharged to the RMH today! Whooooo hooooo!!! My mom and aunt had been visiting us, thank goodness, and helped us pack up the room and lug it all over here. We looked like we were moving in on the luggage cart. We got all settled, played in the house, played outside in the beautiful play garden area they have here, and then finally at 4pm he wanted to go back and relax in the room. He was out cold seconds after hitting the pillow. So we are discharged!! We go back over to clinic Thursday for lab work to check his levels. They follow his white and red blood cells as well as his platelets very closely. His WBC are down to 0.3 now and his platelets have fallen to the 80’s. They anticipate that he will likely need a platelet transfusion Thursday or Friday, which we will be able to do in the day hospital section of the floor and come back to the RMH afterwards. Then going forward, it will just depend on how he feels. He got an injection of Neulasta today that will help his WBC being to produce and hopefully begin to recover a little quicker. As his WBC continue to drop he will likely begin to feel crappier and possibly begin to spike fevers, which if that happens, will get us re-admitted to the unit. It sounds like they still do not want us going home home. They want us close by as they see and learn what his patterns will become after his first round of chemo. So prayers for us on our first night out of the hospital and the days ahead that Cade’s nausea and vomiting are well controlled, that he eats and drinks enough, and that his strong little body is able to begin to recover his WBC before it gets the best of him and brings the fevers. I’m praying he can at least get several days of being a kid playing and running around before he has to be restricted to a room again.
Keep up the amazing work prayer warriors! YOU are his strength. I am so grateful for how well he has tolerated this first round of chemo overall. Your prayers and strength are giving his sweet body the strength he needs to get through this. God bless you all!! Thank you!!!! 🙏🏼 🙏🏼 ❤️ ❤️
Our Warrior Journey 