Washington: You Have a Problem

It's been just over four years since my daughter was diagnosed with leukemia. Those years were hard fought, filled with life or death decisions. I saw my child sedated, hysterical, poked with enormous needles and tubes, pumped full of toxins that ravished her body, stripped her hair down to the scalp, tested the abilities of her internal organs, demolished her immune system. I became a vaccine advocate, pleading with the world to protect those that could not protect themselves. For two years, I scrubbed the walls of my house, I broke the sanitize feature on my washing machine. I nearly lost my mind. I nearly lost everything.

And my sad story is not your problem.

I've met hundreds of sick children. Many of them are no longer alive. The ones that survived will face a lifetime of problems. Their parents all have the same combination of shock/horror/fear on their faces. They too will face a lifetime of problems. Many of them will become financially decimated. Many of them will lose everything.

And you have the gall to stand in a rose garden with smug faces, bragging about the fact that you have zero compunction about preventing these families from gaining access to health insurance. You are fools if you don't think you're on the wrong side of history, here. You are fools either way. Your callous insolence for basic human life along with the fact that you've just spiked the G-D football at the 50 yard line only proves that.

There are millions of adults out there living with critically ill children. Tax paying adults. And if that isn't enough motivation for you to abandon your sociopathic, hypocritical values to actually give a shit. I've got news for you...

These adults can also vote. And alllll those children, whose lives you are so haphazardly screwing over for political gain? Well, with any hope, they'll be able to vote one day too. Grandparents, aunts, uncles, entire support systems, communities- we will all vote.

And that, my friends, is absolutely your problem.

These voters, like myself, have seen hell and lived to tell the tale. We survived because we carry with us an immense sense of tenacity and endurance. We are flameproof, made of stone. These features were not diminished by our journey through childhood illness; they got stronger. And I will tell you something, we refuse to live in a throw away society.


I'll leave you with this, a photo of my child in the midst of, by far, the most difficult phase of her 2.5 years of treatment. If you are able to look at this image and not feel an immense sense of failure for your part in dooming her in adulthood, then I would strongly recommend getting your resume up to date.

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.

Space

In August, I witnessed the most amazing thing. The mother of one of Brooklyn's classmates, looked down at her five year old in the school yard one morning and said "You need to go? Okay, I'll wait here for you." The little girl skipped away, clear across the massive school campus to use the restroom by herself. My brow probably furrowed a little, what if she gets lost? What if she doesn't find her way back? The mom caught my eye and said "Oh! We free range."

Oh, so there's a name for it? Free range? Is that what people are calling it these days?

 I don't free range. These aren't skills I know. I am paralyzed with fear. Terrified for keeping tabs on small humans with weak social smarts. Freaked the fuck out that I'll take ten steps ahead of my five year old and turn to find her no longer there. This is a symptom, a result. It's not an inherent force. I spent months and months living on the fringe of fear to the point that I now only just realized that my normal day to day state is simply a baseline of mild anxiety.

When she was little, I used to step into a party, hand her to the nearest outstretched set of limbs and wander off. I'd generally find her, hours later, fed well and fast asleep. My ability to let her go like that was a skill that I was proud of. It is a skill that went away the moment she got sick and I realized that I was suddenly the mother of two really vulnerable children.

And so it goes, three years later, I've totally forgotten what it feels like to be distant from them. To be gone for more than a work day or to be further than six feet from them in a department store. To watch them fall and get hurt without at least somewhat freaking out internally. I feel like I took on a responsibility when Brooklyn got sick. I understood that it was serious shit, and I needed to step up and not take the task of getting her better lightly. That meant protecting her. It meant obsessing over her.

This isn't a realistic way to live. I mean, eventually she's going to need some space. Hell, *I* need some space. Who wouldn't? So over the last few months, casually while walking through a market or department store, I'll say to the girls "I'm going over here to the next aisle. You stay right here with the cart." I can hear them, sometimes not. But it's a good exercise...you know, to let them out of sight for a few minutes without allowing panic to set in. It's been useful in preparing me to exit the picture longer term.

Which brings me to today! I'm currently on my seventh vacation day away from home, away from my children. I have trustworthy people watching over them, making sure that vegetables and homework happen on a semi regular basis. But, God, I haven't had a true, honest vacation in years. I mean, I've snuck away for a night or two. But I haven't done more than that since I got married and I definitely haven't left the country since having children. It's good. It's ALL good. They are good, we are good, I am good and I truly hope the good stays forever.

Anyway, the importance of space and self care...if I had one thing to preach to my fellow cancer moms and dads, it would be this. Go out, get some air. Put some space between you and the rest of the world. You need it, you deserve it and, contrary to your internal objections, you aren't a terrible person for taking it.

Worry Relapse

I'm posting. How monumental is that? I know, I know. But can I just tell you how amazing life off treatment has been? Pretty damn amazing.

Brooklyn started kindergarten

I started working a little again

We bought a house!

It seems like the further away from the nightmare we get, the easier it is to forget about. I feel like I only mention leukemia once or twice a week now, whereas this time last year it was more than likely every other sentence out of my mouth. Sorry if you had to have a conversation with me then. Brooklyn's cancer had consumed every aspect of our lives.

I decided earlier this year that that had to stop. If it came up, I had no problem talking about it, but I didn't want it to become a defining factor for us. I didn't want to think about it anymore. My energy was best directed towards positive things.

The mind is really a powerful thing, and while I was telling myself  "Stop thinking about cancer, stop thinking about fear, stop thinking about doom" my brain was going "Okay!  I'll just tuck this back here in case you ever need it again."

Thursday morning I took Brooklyn in for a normal blood draw. While we waited for her counts to come back, the oncologist gave her a physical and noted two swollen lymph nodes in her neck. "They are the same size on both sides, which is good." She said. "She's probably about to come down with a virus." She said. "This is suuuuuper common in five year olds, I see this ALL the time." She said.

 "But just to be safe, let's get you back here in three weeks. If you notice any lethargy, fevers or the swollen lymph nodes get worse... call me right away."

Gulp. Suddenly all of those things my dumb brain had tucked away flooded my mind at once. "Fuck she's relapsing. FUCK she's relapsing. FUCK SHE'S RELAPSING." I stared out of the window in complete silence for the next 45 seconds, my mind collapsing in on itself while the doctor continued with the physical. Moments later she turned to me and said "Other than the lymph nodes, she looks great. Let me go grab her blood counts." She came back just as quickly as she left "Counts are good! See you in three weeks." She said with a smile.

So the blood is good...and other than some enlarged nodes, which are apparently super common, *she* is good. She's eating, she's playing, she's happy, she's bright eyed and *I* am apparently a mental patient who thought I had it together but apparently do not. After about thirty minutes I had talked myself down and was able to resume with my day. "This is probably nothing, everything is probably fine. I will not worry myself to death about it until I have reason to."

It's not as simple as I thought it would be, moving on from everything that has happened. Brooklyn on the other hand, remembers nothing. It's incredible how quickly that little pixie was able to move on. Her life is so full of good things, she has no time for cancer anymore. I on the other hand, will probably have bouts of worry-relapse for the rest of my life.

Martini's Up!

In film, the very last shot of the day is referred to as the "Martini Shot". It's not uncommon to hear the assistant director come over the radio and yell "Martini's up!" just before the end of a very long and arduous day. Sort of a throw back to the old days of Hollywood when people drank and smoked way too much and the real last shot of the day, was more than likely an actual martini. Nowadays it simply means that it's time to pack up your crap and put one foot out the door.

On March 29th, 2015 after 800 very long days of chemotherapy, Brooklyn received her last and final 6MP pill. Her Martini Shot.

That. Is. A. Wrap.

I spent the following four days in a tail spin, convinced that her cancer had already returned in the short time she'd been off the medication. Certain that we would go into Children's the following Friday only to be told that she had relapsed and the chemo did not work. I've spent the better part of two and half years holding it down. I've witnessed things that would ruin a normal person's entire month to witness. I have cried exactly twice, in 800 days. I have come dangerously close to losing my daughter on numerous occasions and I have done it all with a brave face because that is what she needed from me. Avi worked his ass off to support us, grandparents and family flew in and out of our lives at a moments notice to care for our infant when we could not, complete strangers sent gifts to lift her spirit- *I* was brave. Even when I didn't want to be.

The pendulum always swings the other way. My dear friend said this a few days ago, and it's stuck with me ever since. It's true. I did not feel brave on April 1st. I did not feel like celebrating or throwing a party. I felt like hiding. If hearing that my child had cancer was the number one scariest thing I'd ever been told, then hearing that she'll no longer be taking the drugs that have been keeping it from coming back is number two.

She will be monitored on a monthly basis for the next year. This is a very crucial time for Brooklyn's body to recover but it's also a time when the risk of relapse is at it's greatest. I am petrified. Not just of the cancer, but also of continuing life as usual. No more obsessive cleaning, no more lock downs or midnight ER visits. No more nurses. I love those nurses. But not seeing those nurses anymore is a good thing.

So here it is. Life's new beginning. Look, ma, no net!

Note: This is actually a post from last year that I wrote and rewrote several times and never posted. 

Brooklyn is Awesome

It's been a while since my last post. Life...LIFE is happening and so I haven't had a ton of time to update. There is much to update, but I'll attempt to keep this brief.

Brooklyn had her last LP, Vincristine and steroid pulse three weeks ago. It was SUCH an awesome day and she was so proud of herself at the end of it all. We all were. We have been at this for over two years now and the side effects of the Vincristine and Steroids seemed to have lessened over time to an almost tolerable level, but this last round...it hit her hard. She complained of leg and back pain, had wild mood shifts. Her enthusiasm about school diminished and all she wanted to do was be home. It was a rough round, reminiscent of the early days in treatment.

I should also note that treatment is not done for us, she still has to take home meds until April 1st. A date that can not come fast enough. Home meds, a relatively simple nightly task, are suuuuch a drag. Every single night: Open a bottle, crush a few pills, dissolve in juice, suck into a syringe. Then you have to sneak into her room at the late hours of the evening and convince her to take it in a half sleep haze. The primary medication 6MP, we've recently discovered, has caused her to experience severe hypoglycemia on some mornings. So severe that she often wakes up, downs a cup of juice and then immediately vomits it back up. This is a side effect. The only side effect of home chemo, really. So, I suppose we should be grateful it's nothing worse. Anyway, April 1st. The end is near.

So what does the future hold for miss Brooklyn? Well, for starters we want to get that port taken out ASAP. They will wait two months after treatment is complete "just to make sure she continues to do well" (and she WILL continue to do well), and then we'll schedule surgery. After that she's got 6 months of immune system recovery ahead of her. We'll have to continue being obsessive about keeping her healthy and away from sick people for that long. 

Brooklyn will continue to see her oncologist once a month for the first year, after that, every three months, then twice a year, then once a year for the rest of her life. The oncologist suggests that Brooklyn has about a 90% chance of living without relapse. A fear that has gripped me since the beginning. The odds are on our side, but I think I will never stop worrying for her.

On our next visit, we will discus the long-term side effects of chemo with our oncologist. We are already beginning to see the psychological side effects of trauma in our Brooklyn. Her doctor told me that, while we often think that being diagnosed at such a young age is good because they won't remember it, we really don't know what damage is caused during such a formative period in their lives. At this point, she's been a leukemia patient for half of her life. It's all she remembers. This afternoon she is heading to CHLA for her first NeuroPsych evaluation and we shall see what comes of it. We want to be as proactive about this as possible.

All in all, a weight has been lifted, but I still feel a great deal of anxiety for our sweet girl. I remember speaking with a friend, whose child also finished chemo around the same time as Brooklyn. We both agreed that the end of treatment is scary as hell. The support net, it's gone. It's like, as long as she's on the drugs then the cancer has no place to go. But now, now we just pray like hell that her body can deal on it's own.

Anyway, I'm really in awe of my daughter, who at four has seen more awfulness than most adults will ever see in a lifetime. She's done it with so much charm and loveliness and this great big smile and that all-knowing look in her eyes.

She's got this.