I have just dropped Gavin off at school. He skipped away from me shouting, Yay! I’m back at school! He has been home sick for 5 days. 5 days of barfing, fevers, coughing and mile-high anxiety for Mummy. 5 days of lying on the couch, watching way too many hours of telly. 5 days of watching his every move, analyzing his every blink. He is rail-thin and I am worn out.
On the upside, it was his first illness since treatment that didn’t see us high-tailing it to the hospital. Despite all my fears, and there were many, I knew that if I took him to the ER he would end up in CT, and with an MRI booked for Sunday, that course of action seemed ridiculous.
Last Saturday morning, he woke up as usual but then wanted to lie down again, never a good sign. Barfing soon followed. With everything that we’d learned from his previous ailments, we assumed his ears might be in play and decided not to let this thing run its course but try to get an amoxicillan script right away. I had long-standing plans that day, so went off with great stress to enjoy myself while Daddy took Bean to a walk-in. The MD couldn’t see an ear infection, but at Craig’s insistence reluctantly wrote the prescription. We thought that after 24 hours things would improve.
Sunday I spent the day alone at home with him, Craig off to work for the first time, like, ever, on a Sunday. Timing, right? He could not keep anything down and I pushed fluids and held a bucket all day. Monday we saw an improvement! He felt well enough to come shopping, was quite active and even wanted to eat a sizeable lunch. But then back to the couch for more vomiting.
I booked a last-minute appointment and took him to the doctor. He kept saying things that were sending my blood pressure through the roof, like, My eyes feel all crazy, they’re looking all over the place. Double vision!? Was that double vision?! After many Q and A’s, we established that he wasn’t seeing double. His doctor was worried too, but felt that it was still possibly a viral infection. We talked through the symptoms and agreed, that logically, it seemed to be a virus. She advised me to let it ride to the five-day point and reassess from there.
So, although there were a few ups and downs, yesterday he finally made it 24 hours without being sick, and felt well enough to eat his breakfast this morning and return to school. And I am left in the wake of this with MRI looming three days away, booked, OF COURSE, for the day after my cousin’s wedding which will take us out of town. I cannot complain though, because for the first time ever, MRI called me. On time. Instead of me badgering them for weeks to get an appointment.
Tomorrow marks two years since Gavin’s last chemo. In some ways these years have felt like an eternity and those days seem long ago. But the pain and suffering we went through is forever etched in my memory. I remember almost every event from those six months with absolute clarity.
Each time he is ill, I am painfully reminded, not of treatment, but of the terrible days before diagnosis, when we didn’t know what was wrong with him. We only knew that he was in pain, he was vomiting, his balance was off. When we did finally discover the truth, I felt horrendous guilt for all those days my baby lay on the couch and we were treating him for an ear infection. For a very long time, I couldn’t look at photos of him from the time before. Or I would look and I would cry and cry, feeling tortured by those images of the beauty and innocence that was lost.
Now I can look. I still cry, but I also smile. I can also look at all the photos of all 730 days since the end of treatment. And see times of great beauty and joy that the last two years have brought.
My fears will always be with me. My child was almost taken from me and that is not something I can forget. Every parent who walks this road lives with the fear that this terrible disease will return. We live with the fear of knowing that it does return, often. So we say our prayers of protection and watch our kids. I watch Bean non-stop. I watch how he blinks, how he moves his hands, the way he rubs his eyes. I watch his gait, the way he places his feet, the way he sometimes rubs his head. I listen to his voice in the morning when he talks to Daddy and I lie upstairs trying to steal more sleep. When he is nonsensical I analyze it: normal four-year old stuff or a sign of cognitive change?
And I am always relieved when he says things like, My head is just itchy or I’ve got an eyelash in my eye or That’s just a silly word I made up. And I am relieved when the symptoms of a five-day bug finally wane and go away, because if this were progression of disease, it would do just that. Progress.
Three more days until MRI, which I am sure will be clear. I know it will. Please say your prayers of protection for my Gavin too.