Today Eli turned seven. We stayed in, having strung up pictures from Zelda Wind Waker to make the day festive. I knew Eli liked them because he immediately asked to play that game this morning. His favorite foods were assembled, and as random as they were (pizza and quiche florentine), the meal was absolutely delicious because he was happy.
Presents were opened, cake was eaten, and we held his smile tightly in our minds.
These past few weeks have been tough. Learning medicine names, administration schedules and symptoms to watch, what his diagnosis means . . . so many things carefully highlighted and annotated. When we were getting ready for discharge last week I mentioned to one of the nurses that one of the hardest things about that day was that you have an ingrained expectation to take your child home healthier than when they entered the hospital.
And now he is so tired. We are looking forward to getting past phase one, called Induction, because his system is being hit hard with meds to force remission.
Steroids are part of Eli’s daily chemo and they make him ravenous. If he’s not eating food, he’s thinking about food, or wanting to make food if he has the energy. There’s really no way to anticipate cravings either—and they are intense. A tearful 6 a.m. corndog demand (when he hasn’t eaten a corndog in over a year) is not out of the question.
As exhausted as his little body is, he looks forward to the surprises our community provides for him. Neighboring children send him encouraging notes and drawings, deliver a beautiful box that explodes with balloons when opened; teachers and classmates FaceTime with him to read a special story and sing Happy Birthday to him, and every day his sweet big sister, who is growing up so much faster than we wanted her to, dresses a stuffed monkey to go to school for him as a reminder that he will be back one day.
Friends take time from their day to bring us food and encouragement, to send the kids treats and presents, and through it all, they serve as reminders that God has not abandoned us, that He is watching over Eli.
That knowledge has helped us the past few days because on Friday, Eli’s labs showed that his body is not responding to the treatment as quickly as his oncologist had hoped. His treatment will intensify in the months ahead. We have been counseled on how to be prepared for future hospitalizations and ER admittances, to take the mentioning of transfusions in stride—but I don’t think one can truly ever be prepared.
I do, however, now have an abundance of corndogs in the freezer. And today—despite it all—was a fun day.
bELIeve in hope 