I wouldn’t have wanted to be a part of my inner circle yesterday, for this sweet little redhead had a pretty serious meltdown.
My hand was literally on the handle of my suitcase, which was filled with a week’s worth of clothes for myself, Ben and Madeline. I needed to be at my ex-husband’s house within the next few minutes in order to get to the airport on time for our flight to Chicago. We were headed to the Windy City to attend a conference specifically for Neuroblastoma families – ALL the important doctors were going to be there, and we wanted to pick their brains about the best way to save Ben. I’m usually running a little behind, so when I saw Matt’s name pop up on my phone, I think I answered with “I’m on my way right now.” He cut me off to ask if I got the call from Dr. Macy.
“What do you mean?” I asked as my body filled with the natural defense mechanism of adrenaline – my glands are always happy to produce this in massive quantities. The buzz always starts in the pit of my stomach and shoots out to each limb, the metallic taste overtaking my mouth and pressuring my internal capacity to its limit. The only option then is to let it violently shake my body in hopes of finding a way out.
Matt dropped the bomb: “There’s a new spot.”
We had spent the previous day at Children’s doing extensive education on this MIBG therapy. Ben will be the first kid to receive MIBG in Denver (many other kids in Denver have done this MIBG stuff but have had to travel to other states for therapy) so it’s kinda a big deal for Ben to be the first. And everyone is being extremely cautious. Part of the pre-treatment workup was to scan Ben for hours. Okay, maybe not hours, but it was way longer than a routine MIBG scan. As always, Ben handled it well, lying still for a very long time while the gigantic machine perused every inch of his body.
Dr. Partrick had removed one cancerous lesion from behind Ben’s collar bone on July 1st, but we knew another spot remained. To learn that there was another spot, which popped up in less than two weeks’ time between scans, completely caught me off guard.
I dropped the handle of my suitcase, which crashed to the floor with a resounding thud. My body followed directly after – tears immediately spilling over but without sound as I listened to what Matt was saying. “New spot… definitely in the skull… possibly in the brain.” As he continued to explain, my silent tears exploded into wracking sobs. He said that he’d get Dr. Macy on the phone so we could talk about this new development. I forced out something sounding like “okay” and disconnected.
I have no idea what this scene looked like to the average outsider, but I’m sure it was a full-on ugly cry. My body swayed back and forth as I wept uncontrollably, my hands fisting in my hair, stopping just short of pulling it out at the root. My mind reeled. This simply cannot be happening! My son! My darling son. A new spot is really bad. And infiltration into the brain would be super-size bad.
Call dad. Call dad. Call dad. I pulled up my speed dial list and anxiously awaited while the rings went unanswered. He always answers. He needs to answer. PLEASE ANSWER! This added to my distress, which had by then elevated to hyperventilation status. I left a voice mail.
“Dad…ppleaase… call as… soon… as possible.” And then some other fractured words which probably included: “Ben, spot, disease, brain, scared, bad….”
Just in case, I called right back. No answer. I called his wonderful wife to see if she knew where he was. I blurted in staccato: “Ben… tumor… brain… bad… please have dad call ASAP.”
Those freaking adrenal glands weren’t giving up. My body continued to fervently shake. When the phone rang, I nearly jumped out of my skin. I picked up but could not squeak out a greeting. The sobs were audible, though, so Dr. Macy started talking. “…Could definitely see the lesion in the skull but needed an MRI to determine if it’s in his brain.” Tears. Sobs. “Come in today.” Tears. Sobs. “I know where you’re going in your mind, Sarah… try not to do that….” Tears. Sobs.
I’m sure my neighbors were frightened by what happened next. I screamed. I’d never heard a sound like that before, so it was shocking to realize it coming from me. The wails kept rising, louder and louder, until they crashed into a whimper, allowing me to catch my breath. When my dad called, I started off calmer but quickly escalated to actual hyperventilation. He kept me focused while encouraging me to breathe. It was one of the most difficult conversations I’ve ever had.
My friend, Sarah, dropped everything to come to me. My friend, Rhonda, rushed to the hospital to whisk Madeline away and keep her occupied. Matt drove and I’m not sure what I did. By then I was out of tears. During the MRI, Ben could see me in the mirror. He kept blowing me kisses as the machine loudly captured what was going on in my sweet son’s brain. My eyes burned with the threat of new tears as I tried to keep the look of worry from crossing my swollen lids.
Dr. Macy called rather quickly after the MRI to inform us that the lesion wasn’t on the brain. It’s bad that there’s a new spot – and so quickly – but it’s GREAT that it’s not in his brain. We’ll move forward with the MIBG therapy at the end of the month. And while we missed the trip to Chicago, we’re still able to take the second leg, which is a week with my family and friends in Ohio.
It will be a nice break. And boy, do we need one.