I’ve wanted to start a blog for a while now but haven’t had the physical or emotional “space” to do so since Ethan was diagnosed approximately five weeks ago. In a series of posts, I will try to catch everyone up. Please know that if I haven’t returned a phone call, text, or email, it is only because I have been so consumed with getting through the last few weeks — it’s not for lack of wanting to connect with everyone. For the most part, the only people I have talked with are the face-to-face interactions. I so very appreciate everyone’s support — it has been truly remarkable and has lifted me and my family so much (even if you haven’t heard back from me).
On Tuesday, October 28, Steve brought the kids to school and noticed that Ethan’s heart rate doubled after walking across the street and his lips looked very pale compared to his classmates. After receiving a concerned call from him (“I think Ethan’s really anemic, get him in to see the Dr. right away”), I picked Ethan up from school and brought him in to his pediatrician. A quick finger prick revealed a very low Hematocrit, and he was admitted to the hospital that afternoon. Within a couple of hours, we sat at a table in a meeting room and were given a preliminary diagnosis of Acute Lymphoblastic Leukemia (ALL). At the same time, we were bombarded with so much other information about upcoming chemo, procedures, no school for 8 months, and big picture treatment plans.
That was 39 day ago, but as I write this I’m taken right back to that feeling of shock and disbelief and numbness (which admittedly still hasn’t totally gone away). Ethan still had an upcoming procedure to confirm the diagnosis, but we were told that what he has requires a long road ahead but is very treatable with high cure rates. It felt crazy that we were now on this new path. How does our son have cancer? We couldn’t stop asking that question. The few weeks prior had been difficult. We started the school year with my mom having emergency ovarian surgery. The family came down with lice. Our beloved nanny of 5 1/2 years had to suddenly end her time with us and move out. A close friend of mine and one of Ethan’s best friend’s mom passed away (metastatic breast cancer). And our 14-year-old dog got sick with Old Dog Vestibular and looked like he wasn’t going to make it. At the same time, Ethan became very emotional and complained of fatigue and weakness. He cried on the breast cancer walk for our friend. He collapsed in tears at the top of the hill as we left the school because he didn’t want to walk back to his sister’s classroom to get something she forgot. He refused to go on the Inidan Guides hike with Dad and brother. He fell asleep for the pumpkin carving in the middle of the afternoon. He was too tried to go to Taekwondo or tennis. Steve and I attributed it all to psycho-social issues surrounding muliple major events. We assumed he was depressed, and I made an appointment with his pediatrician with the expectation that it would result in a referral to a psychologist. In retrospect, all that he was experiencing was because he was walking around severely anemic, with Leukemia.
Diagnosis day ended with an I/V being started, a four-hour blood transfusion, and our first of what would be many overnight hospital stays.