We had another wonderful weekend at home. A lot of time and opportunities spent with family and friends, getting to play outside and enjoy the fresh air. Saturday we got to all be at Rylans last soccer game bright and early at 8:30am and it was a beautiful morning. Much warmer than the games were the weekend before. Then that afternoon we had a play date with a couple of their favorite friends, AJ and Hailey, topped off with some Halloween crafts that evening. Sunday was a perfect afternoon of trick or treating with our family. The boys got to trick or treat with their cousins in our neighborhood and the grandmas as well as Aunt Shalina, Uncle Alan, and Aunt Patty got to be with us as well. It was freezing and raining when we walked out in to our driveway and by the 3rd house, the rain stopped and the wind let up, and it was actually pretty tolerable to be outside. Thank you up there to whoever made that happen so my baby could enjoy a real Halloween! We actually made it around our entire street block for the first time since we’ve lived here. We usually make it about 4-6 houses at best and then have to turn around. This year was the most perfect Halloween celebration and when we made it back to the house, we all came in and enjoyed some Lasagna that my mom had made while the kids all ate way to much candy and played together. I would love for this to be Halloween every year.
The weekend of shots went well overall, he slept through 2 of the 3 injections so I’ll take it! Monday our lab work was still disappointing. His platelets were down to 13, which was so frustrating to both Chris and me. The doctors, however, were still very happy with the rest of the panel and its reflection that the GCFS shots had done their work. The oncologist was hopeful that his platelets would be up enough to admit on Wednesday so our plan remained to come that morning to clinic and have his kidney function test repeated as well. Monday morning my friend Jamie and her son Everett came over and the boys enjoyed the beautiful sunshine outside riding the gator and the Jeep around. That afternoon I got to have a date with my sissy which was really nice. She cut my hair and then we saw a movie. I was home just in time to enjoy family dinner and bath/bedtime ritual. Tuesday we enjoyed our last potential day home. Ry went to school and Cade and I ran a couple errands. I had to go back to Walmart in Johnsburg to return all the produce I had just bought there Sunday, due to reported cases of Legionnaires disease. I don’t care for Walmart, I never shop there. Go figure the ONE time I decide to quickly go there and grab some stuff all in one spot to make it easy and this happens. But I was not about to risk anything, and they thankfully did not put up any fuss about it. It was another beautiful fall day so Chris and I took Cade to a forest preserve near us to go hiking and take in as much fresh air as we possibly could for the day. He was a little less than thrilled as he had a different type of “park” in mind. When we go there he looked around and said “where is the park?” But I think he still enjoyed himself. We ran in to my Aunt Barb and Uncle Dave there while stopped at a bench to play with a caterpillar. It was a nice surprise and we enjoyed walking the trails and talking with them the rest of the way. I ended up seeing a total of 5 fuzzy caterpillars on our walk that day. All I could think about was the butterflies they would one day become. The struggle-filled journey to beauty and change. They were my sign for the day. My reminder to keep hope and faith as we also were all caterpillars in this current journey we are on. Fighting for our strength to make it through.
Wednesday my mom joined me and Cade and we were all off at 8am headed to CHW. My car packed all up for the 3rd time in anticipation of maybe staying, but still unsure. At this point I begin to get antsy. It’s wonderful to be home, but at about that 2 week mark, I get anxious and frustrated as I just want to get the show on the road and keep moving forward so we can be closer to the end of this nightmare. Chris and I both. We got to clinic for our appointment at 9:30 and she drew blood right away. The nurse told me that it was decided the day before that Cade was being admitted no matter what today. This was definitely a surprise to me as I had not been informed this. And it was a good thing because his platelets had only come up to 16. Dr Knipstein told me that he had consulted with Dr Margolis from the bone marrow transplant team and they had both decided that Cade needed to start regardless of how high his platelet levels had come up. Many things factor in to the count recovery and the fact that Cade got the smallest transplant out of his harvested collections with this 1st round, this was the reason why he was so slow to recover. He got the minimum amount he could have and if the quality of the cells themselves were possibly not super great, then that all factors in to how quickly the body can recover. And this is what they intended to make notes about supporting their decision to start him despite being below the arbitrary number of 30 that was chosen for the trial guidelines. They felt that we are just going to kill off these platelets with the start of the next round of chemo and he will need support by platelet transfusions anyways, so what difference did it make to start with them at 16 or 30. We could let him sit at home for another week or two and he could still be sitting below 30 and then we’d be in the same predicament then having wasted 2 more weeks of time. And with cancer, time is sacred. The more important thing in the eyes of both of these wonderful doctors, was that cade has a disease, and fighting this cancer is more important than waiting for the platelets to come up to this magic random number that was picked out of the air one day. My only concern was whether starting would damage his body’s ability to produce platelets itself going forward, and they both felt that would not be the case. He will receive larger amounts for his next two transplants, with the largest amount being after his third and final round when he will need it the most. Those both should help him to recover better, and he may likely need support from transfusions for a while, but his body should eventually recover it’s ability to produce and maintain a healthy normal platelet level at the end of all of this. I had this conversation with Dr Margolis whom I had seen in the lobby during the staff Halloween costume contest. It was hard to focus and take him seriously because he was dressed like a giant blue dreidle. Haha. Their group theme was holidays.
We were admitted yesterday afternoon in to another new room. No view of the helicopter pad this time, but a beautiful view of the city skyline and fall colored trees. As well as a large construction site for Cade to see cranes, bulldozers, and other machines I would most likely be corrected on the name of by the boys. His kidney function test was complete by 2:30, we were all moved in and unpacked in to our new home for the next few weeks, and since they weren’t starting anything that day we were given a day pass so we could leave the hospital for a while. My Aunt Karen lives close by so it worked out perfectly. We all went to her house and got to hang out and enjoy a nice dinner she threw together for us. Cade slept half of the time on me on the couch, but hey, it was still way better than being stuck here in the room with him napping. He unfortunately has to be on isolation again so any time spent out of this room is a blessing. As we were having to leave to head back to the hospital, Cade remembered their popcorn maker in the basement, but they discovered they had no bags left to make any. As Cade was on the verge of meltdown, my sweet aunt called all of her neighbors and managed to find someone who had a bag so that Cade could get to make popcorn to take with him.
Cade began chemo bright and early this morning. He has done well so far being stuck in this room. We are waiting on an ID consult to determine if they need to swab him to see if he’s colonized with MRSA, or if they feel that since the spot on his head is healed, that it is done and over with. However, I just learned that they want 3 negative swabs in order to pull him off isolation and the swabs need to be a week apart and he can’t be on antibiotics. So that basically means we are going to be in isolation forever. Ugggghh. We just sent the first swab now, so fingers crossed it is negative!! He also started working with PT today. When we were home we noticed some changes in Cade’s walking, doing stairs, and over all gait when he ran. None of which hindered him from being his usual wild and active toddler self. I just thought it was the loss of strength and muscle mass from everything, but Chris remembered from his first 3 rounds that one of the drugs had a side effect of drop foot. In clinic I mentioned it and they tested his reflexes and range of motions and decided he probably did have the start of drop foot in his left foot. His right is still nice and strong. PT showed me stretches to do for his left ankle/calf to help with the tightness and she also brought a play mat in for him to play on the ground and crawl around on as well as a soccer ball for him to kick so that he’s using balance and strength on one leg with the kicking. She also decided to give him a brace to wear at night that will keep that foot in the flexed position to help stretch it while he sleeps. We will see how much he loves this tonight at bedtime when we try and put it on. We are also back to our dreaded week of baths. Two down today, so only 19 more to go.
I wanted to say thank you to everyone for all the love while we were home!! For the meals and kind gestures. For all the loving text messages and phone calls checking in on how he/we are doing. And thank you Megan Doyle and your friends who sent him care packages to the hospital! That was so incredibly kind of you all to think of him and do that for him. I’m trying to spread them out for something to make the hard isolation days more exciting! 😉 But videos and pictures to come. Please send prayers our way for an uneventful stay for Cade his second round. No high fevers, no infections, and no visits to the PICU! Just an uneventful, stir crazy few weeks in our room here on the HOT unit. Keep sending your thoughts and love our way, we definitely appreciate it always. 🙏🏼 🙏🏼
Our Warrior Journey 