Yesterday was a banner day for Alexander.  In the afternoon, he got to have a play date with his good friend Sydney–the two of them are so cute together!

In the morning, two very special guests came to the house.  Alexander’s two favorite sports stars, Ella and Tatumn from the Chicago Red Stars, brought him some very special gifts from the team, including a ball signed by all the players, an authentic Ella Stevens jersey, and a season pass!  He got to kick the ball around with Ella a little–what 4-year-old can say they have kicked a ball in their house with a professional soccer player?  And Tatumn was absolutely amazing playing with him as we talked with Ella.  (Thanks for taking one for the team, Tatumn, and don’t worry–next time you’ll get to participate in the adult conversation, we promise!)  He was over the moon getting to hang out with both of them.  It was so great to have them here.

Pam and Randy left this morning to head back to Chattanooga after days of helping us out so much.  Many, many thanks to them. 

Today feels like the end of the first half of our lives.  Tomorrow begins the second half, the half marked by cancer treatment.  We know we have done our best for Alexander, and we will continue to do everything we can, but all our love and willpower does not treat his cancer.  We have to believe in the care team and the therapies St. Jude provides.  We feel helpless and apprehensive about what is to come.  We hope the first few days of radiation (with carboplatin) will show us that Alexander will tolerate treatment well.  We can’t do much but love him and hold our breath.

All we can do is make his life as fulfilling as possible during and after treatment.  We will give him amazing experiences (until mid-September, when chemo will leave him immunocompromised), play Legos, and help him learn to read.  These efforts are what our neuropsychologist, and now friend and family, has encouraged.  Dr. Heather Conklin is unbelievable and has confidence in us.

The numbers are scary.  Retrospective studies of medulloblastoma outcomes reveal that kids with Group 3/MYC-amplified medullo have only a 50% chance of 5-year event-free survival.  We have to think Alexander’s chances are better than that.  Carboplatin has been shown to increase cure rate; Alexander will get that.  Those data include children younger than Alexander, children that did not get radiation, children with metastatic disease, and children whose tumors were not fully resected.  How much better his odds are as a result of those favorable factors is anyone’s guess.  He is the only patient quite like him in the dataset, so the odds are fuzzy.  Christy and I know what it’s like to play the odds, but poker players like us know that it’s very possible to lose a hand even when playing the odds correctly.  And we only get one hand here.   To paraphrase Christy’s favorite musical, we are not throwing away our shot.

We continue to grapple with how best to maintain normalcy for all our family, including his incredible grandparents, while giving him the best shot possible.

Please continue to share his story.