Last week I got to come home for my usual “two days” as Rylan often refers to it. Mom, do I get my 2 days with you this week? He’ll ask me. Chris is off 2 days every week with his work schedule, and typically he will come up to the hospital and trade out with me so he can spend some time with Cade and I can go home and spend some time with Rylan. So last Tuesday afternoon I left the hospital and headed home to get Ry from daycare and spend the evening together. I couldn’t have been gone for more than 5 hours when Chris text me to let me know Cade had spiked a fever to 101. My first thought was- I jinxed myself! I knew it. I was just saying how good he was doing, how he hadn’t had a fever one single time this round, knocking on wood, afraid to say it out loud, and here it is. He has a fever. I knew the protocol. They would draw blood cultures and start IV antibiotics in the meantime until the cultures result. Last round he had probably 4 different sets of blood cultures done because every time he got a fever after 24hrs had passed, they had to repeat the protocol. His cultures were always negative though, which was good. So when Chris called me the next morning and told me that his blood culture was positive, I was shocked! Rylan and I had a day of running around and doing errands and then I was going to make dinner for us and we were going to have a relaxing night on the couch together. Well this completely ruined my day. I was so upset by the fact that his culture was positive. Based on what it initially came back as, they were pretty sure that the specimen was not contaminated and it was not a false positive. I didn’t understand. He was like night and day from last round to this round, how on earth could he have an infection in his blood? When I left him the day before he was running around being a crazy toddler. I was also deflated at the fact that we were hoping to be home for Ry’s birthday and Thanksgiving the following week and I knew that this meant he would be on IV antibiotics for a good 1-2 weeks. The nurse that day assured us that while this is true, it wouldn’t necessarily keep him at the hospital. If he was doing well, he could go home on IV antibiotics. It still ruined my day though. I was tired from not sleeping well the night before, so I was super emotional and teary not to mention angry at the fact that all of this was taking away from my day I got to spend with Rylan.
I tried to shake it off and make the best of our day. We were already partly through our to-do list and were at Starbucks when Chris had called. Costco was next on our list so off we went. He was not at all listening in Costco, and it was busy for a mid morning weekday run, which was irritating in itself because I was not in the mood. At one point I walked away from Rylan in the store. He had begun looking at a book and literally sat down on the edge of one of the large food display coolers and began reading it, as if he was in a library. He disregarded me saying I was leaving, so I walked away. I went around the corner of course and watched him through the book display case. He sat and looked at every page of the book, finished the book, and then proceeded to put it back and get another one. I was aghast. It was then that he went to show me the book out of excitement and was looking around for me. When he found me he came charging at me and I popped his bubble of excitement (mean mom) and began lecturing him about all the strangers that passed him that he didn’t even notice and how any one of them could have grabbed him and ran off with him. It was not a super fun Costco trip to say the least. I left with about 6 bottles of wine. I usually love going to Costco. After we left, Ry wanted to go to Chick-Filet for lunch. While he played I was sitting listening to 2 women at their table next to mine talking all about daycare, swim lessons, sports, etc. Normal every day stuff. I felt the tears fall down my cheeks. I would kill to be one of those women right now. Instead, my son is in the hospital for chemo and now has an infection in his blood. I seriously couldn’t shake the gloomy cloud that was following me around all day. My sister was sweet enough to invite us over for dinner that night, but by the end of the day I didn’t even want to do that. I just wanted to be at home on my couch. Ry and I went home, took Henry for a walk, had dinner, snuggled a little on the couch, and he was in bed by 7:30. I crawled in bed with a glass of wine and put a show on and was in bed myself by 9pm. It was just what I needed. A good night sleep to just reset.
Thursday morning, Rylan and I were off to the hospital. There is an incredible organization at the hospital called Flashes of Hope. Photographers and nurses volunteer their own time and take beautiful black and white photographs of kids in the hospital and they do it once every month. Timing had never worked out for us the previous months and I was so happy that not only it was going to work out for us to be here to do this, but that all 4 of us got to be in the pictures together. I can’t wait to see them! Chris had told me that in rounds earlier that morning, they said that Monday is not out of the realm of possibilities for Cade to be able to go home. This made me happy. I just wanted to be able to be home as a family for Thanksgiving. In rounds Friday morning, they were saying that things would depend on my insurance and the home health agency as far as getting the IV antibiotics delivered and a nurse being available to come teach us at the home. Great. That way at least everything would be lined up for us to hopefully go home Monday. To my complete shock, the case manager walked in our room not even an hour later saying that Advocate said they could teach us the following day, Saturday. I couldn’t believe it. The doctors didn’t think things would line up this quickly either, but they felt that Cade looked great and it was totally up to us and our comfort level with everything for how quickly we wanted to leave. We were pulling in the driveway Friday night by 6:30 pm. Cade giddy with laughter and excitement about being home. And oh was it so good to be home!!
Saturday morning, Rylan and I had another awesome event to go to organized by Kisses with Keegan. We got to go to Board and Brush in Lake Geneva and make our own wooden signs. Neither of us had done this before and it was so much fun! Then that evening, with the help of both grandmas taking each of the boys, Chris and I were able to get out for a little date night to go celebrate life at a fundraiser for my dear friend Krissy who was also diagnosed with a brain tumor a year ago and just recently finished her treatments. It was nice to get out together for a few hours and catch up with some of our friends. Love you K-Fab! It was so great to get to be there to celebrate your warrior strength! It’s been a great several days home as a family. It was the same song and dance as last time. Injections of growth factor for a few days, lab draws every morning for a few days to see where counts are at. His counts were coming up nicely, so we got to stop the injections. The plan now is to return on Wednesday, November 28 for a clinic appointment to see where his levels are at and get the kidney and hearing tests done. This would be the earliest they would admit him to start round 3. If his counts are not high enough, then we go from there with when to come back. Today we came back to the hospital just for a day hospital visit for him to get labs, his dressing changed, and then a blood transfusion. Plump him up a little bit for the holiday weekend 😉 make him a little more energetic and hopefully much less irritable and crabby. We are almost finished here and then we will head back home. Today is our sweet Rylan’s 5th birthday. He has been asking for months to go to Dave and Busters for his birthday. So that is what we are doing. My mother in law is coming to spend time with Cade so that the rest of us and my family can go celebrate Rylan. Then tomorrow is Thanksgiving. A time to be so thankful for everyone and everything you have. As we sometimes have to learn the incredibly hard way, life is to short and things can change in the drop of a hat. So hug your loved ones tightly and thank God for all the blessings you have in your life today. Thank you for keeping Cade and our family close in your heart and in your prayers. God bless you all. Happy Thanksgiving! ❤️ 🦃 🍁
Our Warrior Journey 