Ten years ago, today, our world was turned completely upside-down.
Ten years ago, I prepared to take Ethan to the pediatrician one.more.time to get meds for what seemed like another infection from nowhere. He had been so sick over the past four months- the sickest he'd ever been his entire life. He never had the recurring ear infections like a lot of kids with Down syndrome do and had, maybe, been on antibiotics a handful of times in his almost three years of life. Shortly after our move to North Carolina, the infections started rolling in. Ear, upper respiratory, sinus, and repeat. Amoxicillan, Augmentin, Omnicef...alternate and repeat.
After four months of caring for a sick child as a single parent (Scott was back in California), I was worn down and beyond emotional. I just wanted my baby to feel better!
Ten years ago, I anticipated leaving the pediatrician with another antibiotic script in hand after an evaluation and possible sinus culture. I didn't even shower that morning. The appointment was at 10am and I figured that I would just tackle taking care of me after lunch and nap time.
We arrived to the doctor- Ethan beyond weak and lethargic. I tell Dr. L that enough is enough. Why is Ethan so sick?!!?!? He agrees and says he wants to run a blood panel. Ethan had fallen asleep in my lap, which he NEVER does. He gathered the strength to fight during the blood draw, but went back to sleep in my arms as soon as it was over.
Ten years ago, we waited for the blood results. Ten years ago, Dr. L says, "I'm going to have the blood test redone because all of his numbers are very low and I need to make sure it's not a lab error." Ten years ago, I knew.
Ten years ago, Dr. L came in with the second blood test results.
"The results are the same. I don't think I need to tell you what I think is going on (I nod), but I believe Ethan has leukemia. I've called Brenner's and Dr. Wofford is expecting you on the 9th floor. I'm really sorry and I will be praying for you."Leukemia. The last time I even thought about leukemia was May 29, 2001- the day we brought Ethan home from the hospital. Somehow, it was burrowed deep down in my mind because I did know what we were dealing with the moment the first blood results came back low.
Ten years ago, I carried my weak little boy to the car and strapped him into his carseat. I promised him that it was going to be ok and that Mommy was going to make sure he felt better. I called Scott and had to tell him that his son probably had leukemia while he was helpless 2,700 miles away. I've always felt that even though I was alone again with a huge diagnosis (I was alone when the doctor told me she suspected Ethan had Down syndrome), Scott had to have been so much worse off than me- completely helpless and unable to be present to keep us all strong.
Ten years ago, I pulled out of the doctor's parking lot and headed in the direction of the hospital. I called Theresa along the way. That's when I lost it. I, all of a sudden, couldn't breathe or talk. When I finally got it out, she insisted that I go get her and that I would NOT be going alone. She also said to make sure that my butt wasn't in the driver seat when she got to me because I was not driving. Here she was, almost eight months pregnant and taking care of me.
Ten years ago, we found ourselves in a massive parking lot without any knowledge of where to go. We finally found our way up to the 9th floor- ONCOLOGY. We checked in with the nurses desk and said that Dr. Wofford was expecting us. Everything was so unreal. This isn't happening.
After checking in, we were shown to our room- Room 901, the first room on the left when entering the floor. Wait, we have a room? We get to go home today, right? That was my biggest moment of denial. Even with a confirmed diagnosis, we would still go home, right? Um, no.
Ten years ago, Theresa and I accompanied Ethan to the sedation suite that is located inside the PICU. What would become the first of many trips to that suite, Dr. Wofford performed a bone marrow aspirate and lumbar puncture. I would never leave his side as he was sedated. Theresa stood behind me and her support, both emotionally AND physically, meant and still means the world to me. We would know within hours.
Ten years ago...ACUTE LYMPHOBLASTIC LEUKEMIA.
Ten years ago, leukemia was confirmed but we were told that the type of leukemia Ethan had did have the highest remission rates and that, typically, children with Down syndrome respond very well. I tried to take comfort in that information, but it wasn't easy as the IV pokes began and Ethan was already hooked up to both red blood and platelets for transfusion.
Ten years ago- February 13, 2004- was one of our darkest days and the day that completely rocked our world to the core and even today, trying to write this is difficult. I still find myself in tears remembering that day and how raw it still is.
Ten years ago, I feared for my baby boy's life and today, I celebrate his conquering of the leukemia beast! He has come so, so far. We could not be prouder of his achievements! And, even when his little hormonal self is driving me to the edge, I can take a step back and be thankful that our little man is here, he is ALIVE! My Bubs is a SURVIVOR!!! And for that, I can be thankful for his little hormonal self.
