Love is a word we all use in so many different ways. We Love God, we Love thy Neighbor, we Love our family, etc. Sometimes I felt the word tended to lose it’s meaning when you said it out of habit or out of necessity. But I promise you, its not possible to say it enough to the people you truly love. The past few weeks have been the hardest, most emotional, weeks we have ever faced, however among all that we felt the most love and had some of the most rewarding conversations and moments we have ever had. The kids and I usually try to do something special for Christina every year on Valentine’s Day, it’s always been more of a day about our love for her, my wife, their mom, our superhero! And while the circumstances may be a little different this year, may not always be as “Happy”, the love is stronger than it’s ever been. So this year instead of buying stuff or bringing breakfast in bed, we want to show the world how SUPER Christina is to us……!
While this post was mainly to share our love for our Superhero, here is a quick update from “yesterday”, Feb 13 and a little from this morning (since I fell asleep writing this haha). After yesterday’s transfusion reaction and subsequent events, Caleb remains in patient today. However, so far so good as the blood cultures remain negative and he has not had a fever since his transfusion reaction. In fact, he was cracking up every doctor, nurse, PCA, etc that came into the room today. He was full of energy, hungry and having a great time. Didn’t help his morning got started with his fav. donut holes from mommy after she dropped Tyler off at school. When mom arrived I was able to jump into work from the parent side of the room while still being close to them (something I am so humbled and appreciative to work for a company that allows this flexibility). Today however they just had a blast all day, heading to the playroom for a few hours, playing games, and so much more. It is incredible to watch Caleb’s imagination grow as he does.
No major appointments or events today. However they did make the decision to keep Caleb’s MRI on the schedule for tomorrow and reschedule the spinal tap for next week. The Spinal tap would require them to puncture the skin and that is not something you want to do when you have no ability to fight off infection. So that has been moved out to Monday, which I just learned is also a holiday for Tyler from school. His MRI will be as scheduled on Valentine’s day. Speaking of Valentine’s day, Tyler came home from school today ready to put together his planned Valentine treat’s for his whole class. Christina went and picked him up from school and I stayed back with Caleb one more night given the Valentine’s day project as well as the fact that Grandma is coming in tonight to spend a few days with us. At the end of the night before Tyler and Caleb headed to bed, Caleb really wanted to FaceTime with Tyler. Well about that time the nurse also walked into the room and boy did they put on a show. They were talking and laughing and telling each other they loved each other. (Apparently all the nurses on the floor now think they are the best two kids in the world, great job boys!). Tyler showed Caleb all his Valentines and how awesome he did writing both his name and his classmates names on every card! I can’t wait to see them and the one he made for Caleb!! Speaking of Caleb getting Valentine’s, our nurse this evening brought in two cards from her son’s school where they all made card’s for every patient here at St. Jude. What an awesome thing to do!
While today probably has so many different meanings to everyone, February 14, Valentine’s day, will forever have a new meaning to us and to our family. Today mark’s the day we will have our first follow up MRI. The type of MRI Caleb will require every 3 months for the next 3 years and likely every 6 months until he is at least 10. Today marks the first day we know in our hearts we will hear the words “No Evidence of Disease” for the first of many many times to come, forever! Those three words are the words we will look for each time we come to Memphis over the next 7 years to ensure Caleb continues to beat this. Right now due to the nature of this cancer, Caleb will not be considered “in remission” due to the many many unknowns still out there. The best status he can get going forward is NED (No Evidence of Disease) and we know that will continue with this scan!!! While today’s scans are in the middle of the remainder of his treatment, they are still just as important as each scan going forward. Unfortunately for today, Caleb’s blood counts remain at 0 so he will not be able to have the Spinal Tap which allows them to check for any free floating disease in his spinal fluid. Because that test requires them to puncture Caleb’s skin he would be at the risk for infection. So for now that is scheduled for next week.
Since I fell asleep last night before I posted this I will give you a little update from today. Caleb had a great night and we woke up to find out that his blood counts are already going up. Just a little so far, but this is much earlier than last time! Caleb and I stayed up a little late last night (yep that is a popcorn cheers!) so we both slept until 8:15 and pretty much woke up and headed down to his scan. He did an awesome job going to his “sleepy” appointment and we are now waiting back in the room for him to finish up. While Caleb is in his appointment, Christina and I will be learning a medical procedure called an eclipse. This will give us the ability to provide antibiotics directly into his port (when he is accessed) as well as administer IV fluids when needed, all at home. Just another new challenge as we turn this next corner. Great news is we should be discharged after he recovers! It will definitely be nice to sleep in our beds tonight!
Off to my MRI, Happy Valentine’s Day Mommy, you are my Superhero and I can’t wait to be just like you!!!