Yesterday was the big day. And man was it a long day at that! We had to be at the oncologist office at 10am so we left the house at 8:30 for our journey. We were at the oncologist office for quite a while talking about the course, the meds, meeting the NP, etc. We were anticipating to be in the hospital for about 2 weeks from now due to the schedule of medications. However, we unexpectedly learned while in clinic, that we will most likely be here for the entire course, which can be 21-28 days depending on how he does. Dr Knipstein explained more to us later that this is likely the case, but we just have to see how Cade does. This is his first cycle and they have on idea how his body will react, what types of side effects he will encounter, and what his blood counts will do. Due to the fact that we live over an hour away on top of it, it’s not easy to let us go home for a couple of days. If his counts are really low by the end, he said he’d hate to have us go home only to literally turn around that same day or the next to return due to Cade spiking a fever or not looking or doing real well. This was sad to learn. For us of course, but mainly for him. Poor baby. We thought 2 weeks was long enough for him to be stuck here, but a month?! Ugh. They aren’t sure yet though, we just have to see how things transpire. The nice thing though, is that there is a Ronald McDonald house right here across the street, so if nothing else, we can at least leave the hospital setting and go stay there for a couple nights as a family to at least allow us to leave, but be right here in case he does need to quickly come back.
From clinic, we went to pre-op for the procedures. We were scheduled at 2pm. Patiently waiting. Patiently waiting. Then at 2:15 we were informed that they had a set back in the OR and that it will be probably an hour before we get in there. ANOTHER HOUR!?!? This poor kid was exhausted from the weekend because we let him skip naps and just be a kid and have fun. Well that caught up to him Sunday night and he refused to eat dinner and ended up going to bed at 6pm for the night. So when he woke up yesterday, he could have only milk until 6:30 and then it was back to clear liquid diet until 10:30 and then nothing after that. So another hour was torture for this kid who had to be starving. AND for this momma who was also starving!! And if you know me, I get hangry! When we were house hunting years ago and I was pregnant with Rylan, Chris required I always have snacks with me because I’d get too hangry for his patience. Haha! I was so thirsty and so hungry, but I wasn’t going to dare even drink water in front of him because that’s just mean. I looked at Chris and said I may have to leave and go eat…and then Cade fell asleep lying across the top of me. So there went that. They finally took him back just after 3pm and we sprinted to the cafe to get some food. They finished placing the line in about an hour, and then the LP was done after that. Dr Desmond, the surgeon, told us the line placement went as smooth as it could have possibly went. Which was great to hear. He said he got to know Cade a little before hand and he can tell he’s a super sweet kid. He told us he did amazing, and that he put a larger line in him for his benefit so that it will help with the stem cell transplant/infusion part of everything. Due to him being on the skinny side though, he said you can unfortunately see the line tunneling under the chest down to where it comes out. This makes me sad only because I have always had very “solid” boys. But hopefully we will get some weight on him here again soon. I’m grateful he chose to do the larger line to help him. We got up to the unit probably around 5pm to be admitted. He finally started his first 2 chemo medications by 10pm. They had to hydrate him well before hand due to the kidney effects one of them has.
The night went well, nothing too eventful. He slept pretty well. Today has been busy. A lot of different ancillary team members in and out of our room all day. He was doing good getting out of his bed and walking around until late morning he began crying and not wanting to get down. When I’d stand him down from bed his knees would almost buckle and he’d fall down on to my lap. I asked him if something hurt or if his feet or legs hurt or felt funny. He said it was his feet. I mentioned it to the nurse who said that the 2 meds he got could have a potential side effect of numbness feeling in hands and/or feet. We discussed it in rounds and Dr Knipstein was hoping it would be a transient thing that would go away, but if it continued or worsened, there was a medication we could give to help with that. Thankfully it resolved within a few hours. By mid-afternoon he was walking around again. We took a field trip out to the play room, that he enjoyed. Granted it lasted about 5 minutes, but he was happy to get out of the room nonetheless. Overall, be it an exhausting day, it has been a good day. He has complained of dizziness a few times, then at one point this afternoon praised himself for not being dizzy. He’s so darn cute. He has not had any vomiting since we’ve been here, which is great! I’m praying this continues. The meds can cause some nausea and vomiting, but they started him on 2 different anti-nausea medications (Kytrel and Emend) that have been working great so far! I had read about these 2 meds in posts and was thrilled to learn that I didn’t even have to suggest them to the team as his advocate. The team already had every intention of starting him on both. Let’s hope they continue to do wonders for this little guy. He really could use a nice break from vomiting! 🙏🏼
Yesterday was a scary day. Not knowing how things were really going to go. Not knowing what to expect. How to prepare him for all of this. How he was going to react. And while we still don’t know how things are going to go or what to really expect, we were flooded with signs and love yesterday from the point of waking up and throughout the whole day. Messages of love and prayers. Scripture shared by my mother. A message from my dad letting me know he saw a rainbow on the way to work and knows that everything is going to be ok. My dear friend Amanda sending me another message sharing with me a sign and feeling she was sent that left her knowing in her heart that Cade is going to get through this. Love from neighbors. Signs in the Illg’s yard that moved me to tears, and still does instantly as I think about it, that say “We are Cade’s Slayers…no one fights alone” Another message shared by another dear friend off of her drink that made her stop to think of me- “Stand strong like the trunk of a tree no matter how strong the wind shakes your branches.” I love this. My sweet pregnant cousin who took the time after her appointment near by to come and say hi and sit with us for lunch to kill time while we waited for Cade to be done with his procedure. Numerous text messages of people just reaching out to offer their help in so many ways, be it big or small. All of it was so positive and it truly has and continues to help carry me through this crazy journey we have been called on.
The signs and love continued on today. And it began with the daily prayers book my mom gave me while Cade was at Lutheran and our world was turned upside down. Cade was sleeping and I opened up the book to today’s date. The message was this:
Look where you’re standing. You’re standing on Me. I’m your rock. Your enemy, the devil, is sneaking around your feet like a desperate, hungry animal looking for someone without self control to chew on. Be aware. Be alert. Be authentic. If you lie to yourself about your habits, and lose control over your day, if you’re easily tempted, don’t lose a second, HANG ONTO THE ROCK. I, Christ Jesus, am the rock for you to stand on with absolute confidence and security. I’m your escape from the devil and yourself!
1 Peter 5:8,9; Galatians 5:16; 1 Corinthians 10:12
I have had a peace with me all day today. I think because days like this, God is truly with me in some way or form, letting me know that it is going to all be okay. Even as I sit here now, as Cade is sleeping and about to get his chemo medications for today. One that they say has the highest rate of allergic reaction. To the point that several nurses are in here now and they’ll remain for a good 15-20 minutes of the start of the medication, while doses of epinephrine and Benadryl are at the bedside in case needed. He started his chemo so late last night that they’re gradually trying to do him several hours earlier each day to try and get him to a more regular time for it all. I want to say thank you again to his warriors. All of his “cancer slayers” out there continuing to keep him close to your hearts and in your prayers. Giving him strength, literally, from around the world. We are blessed for the social support of you all. Our family and friends near and far. You are also one of the rocks that has kept me standing through all of this. Prayers that tonight will go as well as last night did and my sweet boy will have a comfortable, restful night sleep. XOXO
Our Warrior Journey 