Living Each Day

Kyle continues to amaze us. Each day he finds new ways to communicate with us, make us laugh, show us how much he loves us, his friends and his collections! Kyle remained in the latest clinical trial for two weeks. He had a set-back on the first Saturday of the trial when he woke up unable to do many of the things he had been able to do just the night before. In true Kyle fashion he rose to the occasion for his 8th birthday party, truly enjoying each friend and each gift. 

The following day we decided to put him back on steroids in a effort to reduce swelling that had increased dramatically during the previous 6 weeks. Kyle, as expected, made slow progress in the fight to keep symptoms at bay. The hard part of all this (one of many hard parts) is we need to make the tumor smaller to give his nerves more room to repair themselves in order for the symptoms to subside. Although we could reduce the swelling with steroids, we have no choices of available treatment to reduce the size of the tumor. This is the awful reality of DIPG. After radiation the treatment options hope to stop the tumor from getting bigger, regression is the miracle result we continue to pray for each moment of each day. Weighing all our options along with the current place in which we find ourselves, Kyle has stopped taking both the steroids and the clinical trial drug. 

Kyle has been visiting his friends at school each day. He is always excited to share the new pieces he is adding to his various collections. His friends are great about writing to him on white boards and are learning his own variation of sign language. He likes to stay in the lunch room after his own lunch period to have lunch with his brother! Last Friday was a particularly fun sharing day as Kyle's friend, Campbell, let him take her litter of baby bunnies (they are just 3 weeks old) to share with his class. Kyle has picked a precious white bunny with a brown stripe on its back and brown ears as his own. Its name is Easter! Easter makes visits to our house too! He sits on  Kyle's lap and lets Kyle pet him for hours, occasionally hopping up Kyle's chest to lick up any yogurt that might still be lingering on his shirt or chin. It makes us all laugh. Kyle and his dad make daily trips to Boulevard Park for a walk and to sneak a hot chocolate at Woods Coffee. And no day is complete without some time spent playing WOW with Kim, Sean, or Gil who are happy to take direction from Kyle as to what he would like to do with his character, Kyliewylie. 

We have no idea what each day will bring. Instead we relish each moment as it comes. Cherishing each of Kyle's smiles, laughing as he dances when his WOW character levels up, delighting in the hugs and many times he tells us how much he loves each of us. Under all the outward symptoms of DIPG Kyle is still Kyle. And it is Kyle who makes each moment of each day bearable for everyone around him.