My superhero is a kindergartener!
My superhero is a kindergartener! Luke has completed his first month of school. Each morning he wears the biggest smile. He pops out of bed and proudly gets dressed ready to take on the day. It has become so clear how much he loves life... the children, learning and playing. Luke is 6 months post-transplant. We have hit a huge milestone and the thing that comes to mind is a rocket ship soaring into space. Luke had his clinic appointment and the news was bright enough to light up the sky. His numbers were given an A+. His myeloid engraftment was 100% (it was 14% before the transplant).
This time of year will never be easy. The crisp autumn air, pumpkins and falling leaves will always remind us of that October day when we knew something was very wrong with our baby boy. There was an unfortunate turn of events this weekend. I am still trying to understand why? Because I feel there is some reason that things happened this way. On Thursday night at 2:30a.m., we wheeled Luke into the same hospital in the same stroller for the same reason... a fever. It was 5 years later, he barely fit into the stroller and so much has changed but it felt so eerie. I looked at the same chair that we had sat in to change Luke’s diaper. I remember saying (after waiting in the ER) “we don’t need to be here... let’s just leave”.
We didn’t leave and YES! we needed to be there. I remember seeing blood on the floor and being so upset over it. (little did I know at the time how hospitals would be my home) I remember being forced into a little admitting room right after a very sick little girl was coughing and coughing terrified that Luke would catch something else. I remember calling to say I wasn’t going to be at work the next day. I remember pressing the buttons on Luke’s toy out of desperation to keep him calm. I remember pacing up and down the hallway outside of the room that they just took my 10 month old baby begging to God and praying that He help him. So much had changed but in that minute it felt like we were starting all over again.
There are certain protocols that need to be followed post bone marrow transplant. If Luke has a fever 100.5 three times or 101.5 one time we are required to go to the nearest emergency room for blood cultures. A bacterial infection must be ruled out and he needs IV antibiotics to cover him in the wait. The clock resets every 24 hours. We have been to the emergency room twice since Thursday. The feeling of packing a bag not knowing what the outcome would be, wondering what would happen from one day to the next, the exhaustion from not sleeping and worrying, my mom racing over at all hours of the night, the thermometer and list of temperatures sitting on the table …are fears that I never thought we would have to experience again, especially after feeling on top of the world with the great report. While it feels like we have come full circle, I know something now. Luke has an immune system…an immune system that can fight! … Just like we always have!