It was weird being alone in the car with my 4-year-old. She’s my middle child and we never have one-on-one time. “I really need to make more time for just the two of us,” I thought as we drove down the highway. But that would have to be a different day. Today we were going to our first appointment at the children’s cancer center.
A few weeks prior I had noticed excessive bruising on her shins. When I say excessive… they looked like rotting bananas. “Wow! She must play hard!” Everyone commented. Did she? I didn’t know. She seemed to play about as hard as any other kid. The red flag came about two weeks later when I was getting her ready for a bath. I took off her dress and was startled to see an angry black and purple mark so big it nearly wrapped around her torso.
“My god! What happened here?”
She didn’t know – it didn’t hurt. I called my doctor the next morning, after an all-night debate in my head between the overreactive mother wasting her Pediatrician’s time for a few bruises, and the terrified mother who tried not to think about what this might mean.
“It’s probably nothing,” my doctor said the next day, handing me an order for bloodwork. “But let’s just check.”
I believed him. The lab told me it would take about a week to have results. My doctor called the next day. I immediately knew something was wrong. Doctors don’t call with good news. The nurses call with good news. Her platelets were low; in the 30s. The bottom range of normal was 150. Everything else looked fine but we needed to see a specialist to get some answers. It was Friday. The Hematologist was waiting for me to call to confirm the appointment my Pediatrician made me for Monday. He seemed calm but the urgency made me sick to my stomach. I made a conscious effort to breathe in and out – it was going to be okay.
“XX Children’s Cancer Center,” the receptionist answered when I called. The floor dropped below my feet and the room spun around. “…Hello?”
“Um, yes… I am calling to confirm an appointment for my daughter, Monday at 1:00, I think?”
“Oh yes we were waiting for your call. Looking forward to seeing you then.”
I immediately dialed my doctor back.
“Me again!” I tried to sound normal, like I wasn’t crapping my pants. “Ummm, so quick question – they answered the phone ‘children’s cancer center’. Do I need to be worried about anything?”
“I don’t think so. Everything else on her blood work looked okay, but we need to do some additional testing to make sure nothing changes, and find out what is causing those low platelets.”
In an instant, everything changes. Guilt shifts from overreacting to not calling sooner. Fighting my mind from leaping to the worst case scenario. Knowing that up until that moment I had taken every single thing in my life for granted.
For a kid, a children’s cancer center is like Mecca. A full arcade, a play room as big as our house with every toy a child could possibly want. A full snack bar with Slurpies, candy, cupcakes and a stocked refrigerator.
For an adult, a children’s cancer center is a terrifying corner of hell. You are completely submerged in all the things you never, ever want to think about.
Her platelets lingered low for a couple of weeks, and have started rising on their own, albeit sluggishly. She does not have cancer – the doctor is sure. She has Immune thrombocytopenia purpura (ITP), an autoimmune disease affecting platelets. It was probably caused by a virus that confused her body into attacking the platelets instead of the virus itself. Her platelets are still well below half of where they need to be, and we have weekly follow-up blood draws at the cancer center until they are back in the normal range.
We go for our fifth visit next week and everything is becoming a familiar routine. Squirt the Lidociane onto the soft crook in her arms and wrap them in bandages on our way out the door. The nurses greet us like old friends as we enter the painfully familiar wing. Every week I meet a new mom in the playroom. We sit and chat and watch our kids play together as if we’re just two moms sitting at the park.
Usually they skip the formalities. “What does she have?” They ask before I even sit down. They’re curious; she’s the only one in there with hair. And then I feel guilty. Are you noticing a theme, here by the way? I feel guilty because my daughter drew a better card than their daughter. I feel guilty because she’s going to get better. Worst case scenario, she’ll have some steroids and feel crappy for a couple of days. “Low platelets,” I say. “But they’re coming back up.”
I return the question to be polite, though the answer is right there in front of me, hooked up to an IV pole. I instinctively say a prayer that whatever concoction they are taking is working. That modern medicine has come far enough to spare their child.
What I have been continually amazed by is that not once have I seen even a hint of a pity party. I always expect the parents to be sobbing in the corner. But never even so much as a “why me?’. Because there’s no time for that. There is only accepting what is happening, talking about it as frankly as we talk about the weather, fighting and moving forward. Living in – no – relishing the moment. And I now realize we should all be so lucky to be in that place.
In St. Louis, there is an organization called Friends of Kids With Cancer that, as the name suggests, is dedicated to helping kids with cancer. They provide programs such as art therapy, tutoring, tickets to sporting and theater events, family parties, and ‘end of chemo’ parties. They do phenomenal work, and are fueled by generosity. It is organizations like this that help these families maintain some sort of normalcy. I’m sure there are similar organizations in every city. I would encourage you to find a way to get involved, or make a donation today. To clarify – they are in no way involved with or sponsoring this post. I’ve just seen first-hand the amazing ways they are working to bring a smile to these kids’ over the past month and it has made me want to give something back.
Okay – all for now. My 3-year-old is waking up from her nap and she just yelled downstairs that she peed in my bed. Time to go live in the moment.