Journal entry by Jessica McKearney —
Since our last visit Hudson turned the big 7! Seven feels so much older than six. We love that we got to celebrate another birthday and milestone but understand it’s another year behind him. Time is a thief and a blessing. Kyle and I were laying there on his birthday eve and talked about how fortunate we were that we got to have our child have a birthday and we get to see him grow up. When we first started writing this, he was just having a second birthday.
Just before his birthday, Hudson had quite an odd situation. Go figure. He had these low-grade fevers and headache and then developed a rash. The rash was like nothing I had ever seen. It was very bizarre and changed every couple of days. Violet also had strep. We took him to his nurse practitioner who had him tested for strep, positive. But agreed the rash was odd. Strangely enough it looked similar to measles. MEASLES. We vaccinate both of our kids, however with him going through treatment, we weren’t sure which vaccines stuck around or if he had any sort of immunity. The only way to know this is by checking blood titers. After talking with his NP and Dr. Dickens we chose to check. A lot of blood was drawn. He was really upset by this asking why he had to always have blood taken and he wished he no longer had blood. Poor kid was pretty sad and anxious rightfully so. I was also told at my OB appointment earlier in that week I was no longer immune to measles because my vaccine has worn off and I need to be revaccinated. So terrible timing on that. During that week, his rash became extremely itchy to the point he was spending all day crying because of all the itching. Then he had Petechiae on his thighs, that’s concerning enough to make a cancer parent nauseas and upset. I assumed from itching all night. He had to do a round of steroids which he has not had to do since treatment. Talk about PTSD, the steroids. Appetite, irritable, hyperfixated, no sleep, dark eyes. We have a love hate relationship with steroids. Steroid weeks during treatment were some of our worst weeks. Finally, several days later, we saw improvement in his rash, and he was able to go back to school. Good news is he still had immunity to measles so likely he had strep throat with fifth disease which is another virus. Another reminder of what he’s been through and the lasting effects. We will chat with oncology if we should revaccinate for the ones showing no immunity. Fortunately he was all better by his birthday and got to celebrate with friends and family. He had his well child check today with his NP and he’s looking great and answered all her questions correctly. He wanted to know how many days his heart will survive, I let her answer that one. The questions he asks are quite interesting sometimes! His NP was thrilled with how well he’s doing in school, he taught her some subtraction while we were there. He did tell her he has “zaps” or “pokes” when his feet fall asleep at times (nerve pain) which I was so proud of him for speaking up and talking about. We’re continuing to monitor that. Overall he’s doing well and we monitor him cognitively, mentally and physically. He asks a lot more questions as he gets older about why he had cancer, what if it comes back, what medicine would he need, about shots and tubes, about his hair etc. Were very honest with him but simplify some answers, not sure if that’s a good or bad thing but we won’t lie to him. Mentally he does fairly well coping with the answers. For now he continues to love kindergarten, ninja, legos, Star Wars, avengers, being outside playing kickball or using his metal detector, riding his scooter around the house and constantly wanting to do math with us. Here’s to year 7!