Things have gone much better so far this round. I almost don’t like saying it out loud, I find myself knocking on wood every time because I don’t want to jinx it. I looked back at my notes from last round though and he had began with the fevers and blood culture work ups before even getting his stem cell transplant. Then 5 days after getting his cells last round was when he ended up in the PICU with septic shock and a fever of 105. He had his stem cell transplant this Monday. Today is day 5. Not only am I tucking this incredible kid in after a day of crazy playing, but we are not in the PICU. He has not even had a fever once since we began this round. Praise Jesus!! May this glory continue throughout this entire round…and the next one too! 🙏🏼 (and yes, I just knocked on the wood trim of the wall next to me)
It is like groundhogs day being stuck here in isolation. Every day, doing my best to keep this 3 year old entertained as he is quarantined to his room. Our first MRSA swab was negative. Which is great. Now if we can only get 2 more negative cultures within their stupid policy rules so that we can by some grace of GOD NOT be in isolation for his entire last round. There have been many wonderful people helping to keep his sanity at a low though. Care packages that are arriving to us here at the hospital for him. Organizations like Kisses from Keegan who has done wonderful things for us and so many families on this unit, including today when Paul stopped in to say hi and meet Cade with a lego set for him and a Starbucks gift card for me. Not to mention the things that their organization donates to the HOT unit to keep kids entertained or more comfortable during their stays here. Grandmas who bring lots of entertainment and toys with them always when they visit! Kelsey from child life who is so amazing here. She comes in and asks Cade what toys she can bring him and then sits and plays with him for a good hour or so to allow me to get out of the room and take a walk or grab food. He’s been on a puzzle kick lately, so we have stacks of puzzles. Then he has to display them on his table for a good day or so, so that all the nurses can see them. Haha. People we don’t even know are sending him packages. He got an adorable box with a playdough kit in it and a stack of sweet letters from school age kids all signed “Coopers friend” and their names. My eyes filled with tears as I realized that Cooper is the son of my friend Megan that I used to work with at Condell. He even got a care package from the Milwaukee Zoo with a hand written love note in it! It had a stuffed elephant in it with a veterinarian kit and an activity book. The letter said they were “sending him the strength of elephants”. I am seriously speechless. The love of people from all over is so overwhelming to my heart, I can’t even begin to thank everyone or express my gratitude.
Then there’s the nurses here who are nothing shy of incredible. They humor all of his quirks. They go out of their way to come say hi to him even if they don’t have him that day. Every few days they have to change his IV tubing, and when they do they let him stay completely disconnected for a while and just run around and be a kid. And boy does he love this! They rearrange furniture in the room so there is so much more space for him to play and he just runs. We play soccer, we pretend we are running races and break through the finish line (which is a stethoscope), we make forts. The play mat that PT gave him has come in handy too. He does somersaults on it and asks me to roll him up in it. Or sometimes he just crawls around on it and plays….while I do a couple planks and some push ups to make me feel a little better about myself. Someone may or may not have even let him sprint out of his room and down the back hallway super fast to save the poor kids sanity a little bit. Twice. He loved it. I can’t speak highly enough about the nurses here, they are awesome. It has been a week of playing, imagination, movies, stickers, playdough, puzzles, and of course tantrums. Can’t expect much less from a 3 year old, let alone a hospitalized 3 year old. I can always tell when his red blood count has dropped because he just gets super crabby and irritable. His sassyness is at an all time high some days too. The nurses have to keep themselves from laughing sometimes. Like the other day when I ordered him food and he asked me why I’m ordering him food, he’s not hungry. I replied that he has to eat so I ordered food to see if maybe he would want a few bites of anything. He replied to me “oh. Ok. Well when the food gets here I am NOT going to eat any of it.” Or when he tells ME that I’m being a bad girl, or a sassy pants, or tells me to stop being a crabby pants. I mean, how do you not laugh at that?
He has had a few transfusions of blood and platelets so far. His counts officially bottomed out a few days ago, so now it is just a waiting game. Waiting to see how fast his counts start to come back up, meanwhile praying that he gets no fevers or infections in the meantime. They say the counts should begin to recover 2 weeks from when they get their cells. Last round we were surprisingly home a couple days shy of that 2 week mark. I’m praying we will have a similar turn around this time too. This Monday will be 1 week, so we will wait and see what happens over the course of next week. We have enjoyed face time with Uncle Donny and his cousins as well as Auntie Jackie, and visits from Aunt Shalina, both grandmas, and daddy and Rylan as well. That one was a tough one. Cade woke up from his nap in an absolute hysterical tantrum because he was so upset that daddy and Ry were gone. He exiled me from the room yelling at me to leave because he doesn’t like me and then cried “Daddy” over and over as I stood on the other side of the door. I cried. We face timed Chris and he pleaded for him to come back. It was heartbreaking. It was a good 30 minutes before he was calmed down enough that the tears were done. My mom came to visit yesterday afternoon and I left the hospital for a little bit just to get some fresh air. Freezing, fresh air at that! Thankfully she told me to wear her coat because all I had was a fleece with me. Man I am not ready for winter to be here, that’s for sure! I got lost in Target for a couple hours. I forget how easy that is to do! I haven’t been to a Target in ages. Afterwards I stopped by my Aunts house to get some stuff I had in her freezer and then headed back. I was beyond exhausted at this point. Our last few nights were very sleepless as they involved throwing up or pooping our pants, or all of the above in between the usual waking up to pee. My stupid phone GPS was not talking out loud which was frustrating me, so I resorted to my car GPS. Which I rarely do because I find it worthless and incredibly irritating as it takes me on the most ridiculous round about ways to places that it makes me want to scream. But I used it. And thinking it was taking me the same way my phone was, I turned the phone one off. Well it did not. Once again it took me in the most out of the way route possible and as I was driving enjoying my music I started to realize this was not at all taking me the way I’m used to back to the hospital. Then I began noticing city buildings and lights. Nope, definitely not. I never see this on the routes I usually take, but I recognized it from years ago when I worked a travel position at St Mary’s right on the lake. I figured oh well, just enjoy the extra long, out of my way drive. As I was driving I was thinking about Cade and our situation. How he’s doing so well this round. How we still have another round to go yet. I found myself talking and praying to God as I often do in the car. Asking him to please carry us through this. To continue to be with us and help me to feel his presence. As I was driving down 94 and passing the downtown city I was just taking in the views and the lights. I always loved that drive in to the city. The tall tower clock that always let me know if I was making good time and could stop for a coffee before getting to St Mary’s, or if I really needed to pick up the pace. It’s such a pretty clock. As I was glancing over at the view of it all as I drove by, there was one of those electronic add signs that caught my eye. It was a bright solid orange sign with huge bold letters across it that said JESUS CHRIST. I actually didn’t even realize it was an electronic advertisement sign at first when I saw it until it suddenly flashed to the next screen that provided information to call to advertise here. I just stared at it to see if it was going to flash again to the screen reading Jesus Christ, but it never did before I passed it. I couldn’t believe it. I just smiled and laughed as I looked up to the sky with a thank you nod. Thank you for hearing me just minutes before when I was talking to you. Thank you for giving me that sign. No pun intended 😉 I made it back to the hospital and Cade and I were both passed out by 8:30 for a great night sleep free of vomit and diarrhea. Thank you Jesus. I’m praying for another one of those nights tonight. 🙏🏼
Our Warrior Journey 