Today started out with Luke refusing to take his medicines. Luke is no stranger to taking oral medicines. He has been taking them for years every night like a superstar. It was hard, but he needed to be held down to get them in. The day continued and we went back to the playroom. I spoke to Luke about why some people were wearing masks. He replied with... "and a lot of people don't have hair." The conversation continued. He wondered if he was going to lose his hair. 

Will it hurt???

Vitals? Chemo? Good medicine? All of these words that are the center of his new vocabulary. Yet, he doesn’t know what they really mean...and more importantly, "Will it hurt?" How scared he must be!! It was a positive and productive conversation and the day went on nicely. We drew and listened to a "Toes in the Water." We did a puzzle and enjoyed a very special family moment together. We thought the time was right and had facetime with Dad and Grace. The sparkle that came over him is one I will never forget. "Hi Baby Girl!" he said with the cutest, highest pitched voice. He tried "to get her nose" through the phone. He LOVES her with all of his beautiful passionate heart. Grace smiled her sweet innocent little smile. In that moment they were both complete. 

Luke ate dinner a little more sluggish than he had been. This was our turning point. Again, the medicines were forced down his throat. After throwing up several times and repeating the medicines, CHG wipes, mouth care etc. his poor weak body could finally get rest. Today continued the same way. He hasn't eaten anything but a couple of crackers and hasn't been able to sit up. He is pale, tired, weak. Tomorrow is the beginning of the "honeymoon" phase. How could it get worse? I would wonder this if I didn't already know the answer. When we look at how his numbers have dropped so quickly it is clear how he is feeling. Please God protect my babies today, tomorrow and forever! Grace will be giving her marrow bright and early tomorrow morning. Thank you sweet Grace for giving your brother this life saving gift. 

 
 
 
 

Comments

Submitted by Jennifer Falesto on March 16, 2017 - 6:00pm

Luke & Grace are both SO special in SO many ways. Their love for each other is heartwarming.