The McCray family and friends celebrated Kadence, Aunt Patty and Uncle Dave birthdays on Saturday, Oct. 4th, in the most beautiful act of love they asked in lieu of gifts for themselves they asked for donations to the COTA for Kadence’s Kidney campaign. The response was incredible and brings me to tears even as I type this, what an incredible act of love and care for Kadence.
With that beautiful night came fun, excitement, an opportunity for Kadence, Mark, and I to just enjoy watching him be a 16 year old kid enjoying time with family. I am eternally grateful for this time.
Sunday the 5th presented an aftermath we weren’t prepared for, major fatigue set in that afternoon, headaches, body aches, nausea, it was as if his body couldn’t do another thing so he slept the rest of that day and evening.
When he woke on Monday the 6th, he showered, dressed, but had a nasty headache, bloody nose, and vomiting. I thought maybe he was coming down with something else but he knew it was his kidney’s. He insisted on trying to go to school even with elevated blood pressure.
I took him into Rockhurst sat with the Nurse Lisa and his Counselor Kim, they immediately formed a plan he was comfortable with and he made it 4-5hrs that day. Tuesday the 7th again his blood pressure was higher than normal but he wanted to try, he had a Spanish test he wanted to take, he made it 3 hrs, after that we went to take labs at Children’s Mercy, that is what was recommended. He went straight to bed after that only to wake up Wednesday the 8th with a blood pressure of 157/96. My immediate reaction was my machine was broken so I changed the batteries and took his pressure again and again, still extremely high numbers for him. His symptoms were worse than they had been so we went to Urgent Care, then to the ER at Children’s Mercy. The medication I had given him wasn’t bringing the pressure down. Kadence wasn’t making any sense to me either, talking in gibberish, nasty headache, and he needed to hold onto me to walk. If you have ever watched your child struggle to just be…you can understand how difficult this is to witness. After all of this he was allowed to come home. He couldn’t get to bed fast enough. We both prayed on the way home that he would be better by morning.
Prayers, faith, the love of a son, the will of a mom who loves fiercely…he woke up on Thursday the 9th, he showered and ate enough to take his medications to get to school. He stayed the entire day, came home dressed for the first time in his tuxedo to sing in Rockhurst Fall Choir performance. I sat on the front row in case he didn’t make it but he did. The pure determination to sing with his choir and be apart of Rockhurst family was what he needed.
While he was preparing to perform, Kim Brown was preparing the plan needed to give Kadence the best chance at staying healthy enough to be “transplant ready”, without her and the Rockhurst family not only would he suffer academically but their support is allowing his chances to be his best normal all we could ask for, what a gift! We are blessed to be apart of such an incredible community, Rockhurst does what no other school would, bend so Kadence doesn’t have to break.
While most teens go out on Friday night, he used that evening to rest at home. Saturday the 11th he thought he was spending with his dad but those plans feel through so he used that time to get caught up and went to work for 3hrs that afternoon. Sunday the 12th we took our time getting around and hung out together discussing our love for Diane Keaton and her movies that brought us so much joy. Those hours together just talking about next steps and preparing to share his story with his peers at Rockhurst in the upcoming weeks are what I love the most about being Kadence’s momma. He reminds me everyday that it’s a gift, that he is a fighter, and Alports Syndrome will not win.
Your continued prayers and love are being felt in our lives! I know we have a long way to go but with that we will win!
Love you all,
Charissa