I Packed My Xanax

Thus concludes the most terrifying 14 days of my entire life.

I've spent the last two weeks on the brink of insanity. Worrying about Brooklyn and whether or not her treatment had failed. Left with nothing but my own thoughts to either boost or destroy my mental well being, I had touched on nearly every scenario leading up to today's oncology follow up. Should I get my car washed before her next appointment? Stock the fridge? Finish the laundry? Tie up loose ends? Will they keep us inpatient if they suspect relapse? Should I secure childcare for the baby? Should her dad return from being out of the country ten days early? Is that a bruise on her arm? Should I pack an overnight bag?!

I packed a bottle of Xanax, an iPad and a sparkling water.

The wait, MY GOD, the wait. It was the longest wait in the history of all waits. By the time they called our name, I had convinced and prepared myself of the inevitable. I decided to not cry when they broke the news to me. I figured it would cut the time down and then we could get right to business. By the time they called our name, I was crazy. Like, certifiably so. Like, if a psychiatrist had sat down and given me an evaluation at that very second, he would have stuck up his pointer finger and said "I have a diagnosis: CRAZY."

The doctor came in holding a paper in her hands. *The* paper. I took a deep breath. She said "Hi, how are you guys." I said "Nervous. How are her counts?" Not even pretending to shift my eyes from that sheet of paper for even a second to make eye contact with her. "Her counts look good!" She replied...all cheery and shit, too. As if the clocks on all the walls hadn't just simultaneously stopped ticking or something.

"Her counts look good."

I swear to you, all of the oxygen left the room at that exact moment. It was so simple and literally the only scenario that I had not prepared myself for; the best scenario. I burst into tears. She is fine. The oncologist assured me that Brooklyn's iron levels are probably low due to a couple of things. Namely virus, but also an already low base level and a diet low in iron (my little vegetarian). They were still on the low end, but the fact that they had not changed for the worst was a good thing.

I learned things with this scare. SO many things. First I learned that scares exists and they should be expected. I've never met a survivor who hasn't had a scare. I was kind of blissfully floating through the first year feeling all confident like we were safe. Foolishness.

I also learned that I need to respect this disease a little more."Good cancer" my ass. Kids die from Leukemia every single day. It is not "good" in any capacity. This disease is stealthy and insidious and comes for more children than any other form of childhood cancer. I had grown way too comfortable with our status in recovery and I should have known better.

Among other things, and quite possibly the most important, I learned that Brooklyn is officially one year off treatment. I've been so wrapped up in this experience that I hadn't even noticed. A year. An important year to boot. The first year poses the greatest risk and we made it through that first year.

The day went way better than planned and I am breathing so much deeper tonight. Thank you to everyone for keeping us in your thoughts. We felt the love from every angle.

Thursday

Survivorship is hard. No one ever tells you this, but it simply is. The period of time following the completion of chemotherapy is fraught with a plethora of complex emotions and feelings that no one is really ever prepared to process.

I mentioned in an earlier post that Brooklyn had some enlarged lymph nodes in her neck about five weeks ago. I took her into Children's for a follow up last week and, well, the lymph nodes are still there. In addition to the lymph nodes, Brooklyn's last blood work showed that she is now anemic. A frustrating discovery.

To be clear, swollen lymph nodes and anemia are two common symptoms of leukemia. They are also common symptoms of viral infection and if you have forgotten, this is also what we were told back in 2013 when Brooklyn was initially brought into CHLA for further testing. Virus or Leukemia. I naively assumed virus. I could not have been more wrong back then. At any rate, we've been instructed to return on Thursday to see if her counts have adjusted back to normal on their own. If not, we will likely be staring down the barrel of a bone marrow aspiration to rule out a relapse.

It's been a looooong two weeks. I have been operating on autopilot, floating back and forth between sheer terror, to complete optimism. On occasion I'll feel guilt that I must have done something wrong along the way with her meds, other times I will feel anger with... I don't know, the statistics associated with this dumb fucking disease, maybe? It's all been very scattered. Occasionally I take a step back, look at the facts and use reason and logic to come to some kind of sane conclusion. Brooklyn is fine. Statistically speaking she met all of the markers to have the best prognosis possible with this disease. Our house has been grounds for a plague of viral infection for months now. It would make complete sense for her to simply be fighting something right now.

Anyway, if I can ask one thing from our friends and family right now. Please keep Brooklyn and our family in your thoughts on Thursday and send positive, healthy vibes to our girl.