Yesterday was a great day. I got to come home to spend the day with Rylan. I came home Tuesday night and was going to get up and go back Thursday for Chris to come back and go to work. To my absolute surprise, Chris called me yesterday morning saying that there is talk of him possibly coming home today! I couldn’t believe it.
Let me rewind…
Thursday we had been readmitted. They had taken him off of the Marinol he was on for nausea and appetite stimulant because they felt it cruel to make him want to eat when it hurt him to put anything in his mouth. I was fine with this.
Thursday night he slept mostly with a little crabiness overnight. Friday he had a few episodes of crabiness and frustration, which I felt was just him being a 2 year old and angry about being back in the hospital. He had received platelets late Friday night and then received blood as well Saturday morning because of his blood counts. This is expected. His agitation continued to worsen. And he was vomiting a few times as well by the afternoon. I spoke to the doctors and they thought possibly they hydroxizine that we had put him on in place of the Marinol could be causing a paradoxical effect. He was on a pretty high dose of it, so I thought it’s possible, and we took him off of it. Hours passed and not much change. Actually he seemed to worsen with his tantrums and outbursts. I asked the day nurse if this was “normal”?! Is this just expected from a toddler who is stuck here? That they just hate the world and they’re angry and trying to have some sort of control still and they act like this? I mean it was nothing like I had ever seen. She told me yes. By later that afternoon things were escalating. He was like I had never seen him before. He was beyond angry. The littlest thing would trip him off and he would be out of control for 20 minutes at times. Screaming at me at the top of his lungs repeatedly telling me to leave, get out of his room, go behind the curtain. If I tried to get close to calm or defuse his tantrum he would punch, kick, hit, pinch me. This was not my child. The nurse that came on that afternoon was in the room at one point and I told her I was told this is normal, but I don’t agree, it’s beyond normal toddler tantrum and control. She agreed. At this point, the hydroxizine had been stopped, that was no longer it. They thought maybe because he was so anemic he felt terrible and once the blood was all in he would feel better. By the evening things had most certainly not improved. Our wonderful nurse agreed with me that this was not ok. This was not the child she was used to seeing either. And this was more than overtired frustration and control issues. She kept at the doctors about it and it was decided to do a quick MRI to make sure nothing was going on neurologically. Thank goodness the MRI was normal. But then what was wrong? What was going on?
Chris ended up coming up that night to help me and thank goodness he did because I truly would not have been able to handle it. It was a rage I had never seen him have. Anger boiling out of his skin when something didn’t go his way. The way he would whip his blanket at us or swing at us, try and bite us. At one point on the way to the MRI he had grabbed my neck and just dug his nails in to me. He ended up sleeping for a few hours that night and woke up at 1am. He did not sleep one wink from 1-6:15am. Finally at 6am I charged out to the nurses station and angrily said that this is out of control. He has not slept for a minute for over 5 hours. They called the resident. We ended up giving him a dose of Benadryl to see if it would make him finally surrender and sleep. He fell asleep at 6:30am. I prayed it was just sleep he needed. I snuck out at 10 to go over to the RMH and shower. When I returned at 11am I was so hopeful…until I could hear him screaming at Chris from the hallway. He wasn’t any better. And he was awake already, which meant he only slept for 4 hours.
Chris informed me that in rounds the pharmacist dug deeper and pulled up the side effects for Marinol withdrawal. It described him to a T. He had begun throwing up bile, which was new, and that morning he said his head hurt. We figured just from screaming his face off for 2 days, but it was more. He was in withdrawal. I had never even thought of this, but it made perfect sense. They hadn’t thought of it either because kids are on/off this drug all the time and there are no reported cases, especially in his age group, of having withdrawal. This was why he slowly escalated and the fits of rage got more and more extreme as the weekend went on. He got a dose of Marinol Sunday afternoon and they would give him another dose in the evening, but it would take a bit for the levels to get back up in his system. Sunday was terrible. It didn’t get better. He had longer moments of sanity, but still would spin out of control at the simplest of things. To make matters worse his hair began to fall out and in his frustration he was pulling it out in clumps. Aunt Shalina came up that afternoon to shave his head. He of course fell asleep shortly before her arrival and napped for a while, but he needed sleep. And it gave her and I time to visit. The nurse told us to leave and get some fresh air and she sat with him a while while we left. He woke up and things were still no better. But he did at least cooperate for her to shave his sweet little head. And he looked so cute. We got in the bath right after to get all the hairs off and after bath he was in an outrage again. I had explained it to her throughout the weekend, but as she told me before she left that night- it was nothing like I could have described. Seeing it in person was unbelievable. My words to her didn’t even do it justice to just how extreme he was until she witnessed it for herself. At one point he and I were standing in the room and he was so angry he tried to hit me. I stood there and told him to go ahead and hit me, if it’s what he needs to feel better, than do it, hit me. He charged at me with both hands and checked me. Still angry, I told him to keep going, get it out. He did. Again and again. Finally after the 3rd or 4th time I lost it and began to cry. I crouched down and grabbed him trying to fight through the tears enough to talk and I just said to him “please stop baby. Please.” As I squeezed him tight and picked him up. I could see my sister standing at the end of the bed crying as she watched. It was heartbreaking. He wanted nothing to do with me that night. He exiled me to the space between the doors of his room and the hallway. A space I was very used to being over the course of the weekend. He screamed at me to go there often or to go back to the RMH saying he didn’t want me there. When we both tried to leave, he cried and said “no, not Aunt Shalina.” The nurse had got him to take the 2nd dose of Marinol along with some melatonin, and bless my sisters heart, despite how late it had become, she stayed. She was forced to sit behind the curtain (another favorite demand of his), but she sat there in the room behind the curtain while I sat in the hall and we both waited. Once he fell asleep, she snuck out and I snuck in to go to sleep.
Monday morning he woke up and seemed normal. His demands and things he tried to control were back in the normal and appropriate realm of toddlerhood. His attitude was gentle. I looked at him and said “there you are baby. I’m so glad you’re back. I missed you so much!” And he smiled and said to me “I’m not crying anymore!” I said “I’m so glad honey. I hope you feel so much better.” And we hugged each other tightly. My eyes filled with tears of joy. I was so relieved. We were back to our usual routine of going down to the cafe, outside to the garden, going to the library to get new movies. This time when we went outside for fresh air, they were doing construction. We walked with our giant IV pole over to the fence and he sat on my shoulders and watched the excavator and dump truck over the top of the fence. It was a great morning. He still wasn’t eating or drinking anything, but I didn’t even care. My dear friend Krissy, who is also battling brain cancer and going through chemo, came to visit and bring lunch. Along with that she brought many other goodies. One was an essential oil and coconut oil blend for immune support that she gave in case I wanted to use it on the soles of his feet at night. That was what she did for her kiddos. Tuesday was another good day. We played, started to eat and drink more, and had only a couple minor meltdowns (the monkey blanket is my nemesis!). His blood counts had begun to come up monday morning too. The WBC had gone from zero to 0.2! It was a start! Haha.
Well yesterday when Chris called to tell me that there was a possibility of discharge later that day, he told me about his blood counts. Now it very well could be coincidence. His counts could have come up on their own regardless. But I had used the immune support rub from Krissy on his feet for the last 2 nights as well, so I couldn’t help but wonder if that played any part. All I know is that Monday his WBC were 0.2 and his absolute neutrophil count (ANC) was undetectable still. The ANC is their bigger concern because that is the component that is responsible for fighting infections. Tuesday morning the WBC had gone to 0.7 and the ANC was like 500. Wednesday morning Chris told me his WBC were 2.5 and his ANC was 1400!! He had more than doubled his ANC count. The team couldn’t believe it. As adults our ANC’s are usually 1500. This was incredible!! They stopped his IV nutrition that morning and were going to recheck his labs at 2pm. If everything looked good, he…as Cade would say….would be “outta here!” Chris called me at 3pm to tell me they were working on discharge paperwork. My baby was coming home!!!!! The team had told us Sunday that their goal was to get him home at least for a couple days by the weekend. The fact that he got to be home for FOUR DAYS now was an absolute gift from God. Tears of joy.
Poor Chris had to deal with cleaning out both the hospital room and our room at the RMH. 200 bags and one child later…they walked in the door. Cade was home! He had a great night sleep in his own bed and arose at the usual time in the Winters household of 5:30 am. Some things never change. Why my children can’t sleep until at least 7am is beyond me 😉 Our focus these next few days will be making sure Cade can eat and drink enough to stay hydrated so we don’t end up back in the hospital sooner than we have to. Monday we will return to clinic and get admitted in the afternoon to begin his 2nd round of chemo. Right now we are enjoying being home. Enjoying the fresh air outside. I’m sitting on the back patio typing this update and watching my boys play together, driving the gator around the yard, picking things from the garden, riding bikes. Just being little kids. It’s pure bliss. I am so grateful. It was a long and horrible weekend, but here we are just a few days later. The light at the end of the dark tunnel. While I know there are many more tunnels ahead, I’m happy to have made it through this one. ❤️
Our Warrior Journey 