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.

Where We Stand

I realized today that I haven't really posted anything since late March. That was a rough month for us with all of Brooklyn's hospital stays, but you should be happy to know that she has maintained a relatively healthy status since then. Her oncologist speculates that every ALL patient will have one series of inpatient stays during his or her treatment. With any hope, that was ours.

Recently people have been inquiring about Brooklyn's current health status and so I thought I'd save everyone the trouble and write an update.

Brooklyn is plugging along in treatment. She takes daily oral chemo plus a high dose of oral chemo every Friday. Once every month we get her blood counts drawn and then every three months we go into clinic for intravenous chemo and intrathecal chemo followed by a week of steroids. It sounds hard but it's child's play compared to our first six months of treatment. At this point her catalogue of shitty cancer killing drugs is so extensive that the chemo they give her now carries very few side effects.

The steroids, however, remain her best friend and greatest enemy. Thankfully she takes them for a short enough time to only catch a glimpse of the old raging sociopath we came to know so well back in the beginning. She quickly returns to our sweet whimsical child once her final dose is completed.

We have almost exactly one year left in treatment. Back in the beginning of all of this, I felt like it would be an eternity before we saw the light at the end of the tunnel, but here we are, one year away.

 I see a change in the Brooklyn I knew then and the Brooklyn I know now. The day we landed at Children's Hospital she wouldn't even step on the scale without screaming her head off. She was frightened of her own shadow. Anything that she didn't know or understand was met with untrusting fear and the hospital was completely unchartered territory. Now, she is brave and tougher than nails. She will tell you just as much if you attempt to insinuate otherwise. I've often thought that the crappy circumstantial events that sometimes take place in a person's childhood can have the great ability to change them for the better. I believe, in Brooklyn's case at least, that this has been such an event.

For her dad and I, I'm not sure that so much is true. We now carry a hyperawareness for our children's well-being that was not there before. The unimaginable happened, our delusions were crushed. Now, I suppose, we feel that anything is possible. In five years our journey will end and Brooklyn will be deemed cured, but I don't know that we will ever be the same.

ISO: Immune System

I really must apologize for the radio silence. For a minute there life had started to resemble something rather normal. Brooklyn started school again, her hair is growing back and she now sports a pretty adorable little crown of curls, treatment has slowed way down and we are able to get out there into the world and live like a normal family. We even welcomed two new members, Maple & Ginger, into our family! Aren't they the sweetest?

Perhaps it is that I overestimated the simplicity involved in Long Term Maintenance, or maybe I am just THAT good at jinxing us, but then came the dreaded cold and flu season. Since the beginning of February we have had three lengthy hospital stays for viral infections and one bacterial infection. It's been exhausting and stressful and daunting all at once. If you know anything about viruses then you would know that they can not be treated, you just have to ride them out. The bacterial infection, Cdiff is a tough one to get rid of and required 15 days of treatment just to finally kick.

As of last Friday we are back in the hospital. At first they were certain it was sepsis and even began treatment for it. But the results of her cultures are back and she doesn't have sepsis. We are on day 14 with no immune system whatsoever, however today her bloodwork showed a rise in white blood cells which means an immune system is in the horizon. 

We are all ready to go home. This particular stay has really taken it out of us all. The back and forth, the long monotonous days, the maddening attempt to tackle responsibilities out in the real world while being trapped inside of a hospital. Also the fact that there is little time to spend together as a family. 

At any rate, I know we will make it through this. It's really just a matter of rebuilding her immune system and getting her through this season. Please send out some good vibes that her blood counts will be on the rise tomorrow!

One last thing! Over the past month we have had a ton of friends and family come to our rescue (and offer to help!), whether it be to pick up and watch baby Indie at a moments notice, or stop by the ER with a late night meal when we were utterly desperate, or even to pop in for a visit with snacks and toys to brighten our day. I really want to thank everyone for your help in getting us through this. I honestly do not what we would do without you all and it's really an amazing feeling to know that we are not alone in this.

It's Been a Year

A year ago today we were waiting. Waiting for the results of Brooklyn's bone marrow aspiration. Waiting for the oncologist to walk in and say "just kidding, you can go home home now!". Waiting for our lives to be turned upside down. I remember that day more vividly than any other day since. 

Avi and I agree, there is something about Brooklyn. She possesses something different than the other children. She is tenacious and precocious, sometimes even a little provocative and, my god, so unrelenting when she doesn't get her way. Anytime I have doubted her ability to do something due to her size or age, she has gone out of her way to prove me wrong. Her siblings possess their own wonderful and unique qualities; Brooklyn was built to fight this disease. When people comment on how well I've handled this or how much work I've put in... well, it wasn't me. I am simply a chauffeur. I measure out medications and pay the bills while attempting to quell my own crushing anxiety. Brooklyn did the work, she is fighting this fight, beating this beast.

It's a bit of an odd anniversary. How does one "celebrate" the day their toddler was diagnosed with a near fatal disease? It seems inappropriate to buy a cake for the occasion. So I'm making this day completely her own. We will do whatever she pleases. She's got some pretty lofty plans, which so far have consisted of watching Ratatouille while reading an American Girl catalogue. My kind of gal.

We still have a ways to go in terms of treatment. A year and a half to be exact. March will mark one year in remission for Brooklyn. It's a milestone. Remaining in remission for one year without relapse kind of ups the odds, if you will. I breath a touch more easier with every day, week and month that passes without incident. My fingers remain crossed.

It's been a year, dear Brooklyn. I thank my lucky stars for you every single day.

HAPPY BIRTHDAY BEAUTIFUL BROOKLYN!

In a very unexpected turn, Brooklyn's blood counts shot up virtually overnight. The doctors were shocked and so was I. They released her early.

So, guess who got to blow out her birthday candles today?

Happy birthday, little girl! We are so lucky to have you in our lives. I thank my stars for you every single day.

ADMITTED

It's hard to believe that the six weeks of delayed intensification have come and gone. The day I gave Brooklyn her last chemo pill of the phase I thought we had made it out in one piece. I was incorrect in that assumption

Sunday afternoon I returned home from an overnight with friends to a seemingly happy little girl. At bedtime I noted that she felt warm so I took her temp and it immediately read 101.3 which is pretty much a guaranteed trip to the ER. I decided to wait 20 minutes because the last time she had a fever, it was on vacation, we hauled off to the local clinic and it turned out to be nothing but a cold. The next time I took her temp it was up to 101.8. I called it in, they asked me what phase she was in, I told them delayed intensification and they told me to not waste another minute.

An hour later Brooklyn was curled up in a ball, in a hospital bed, crying and shivering. Medical workers were rushing in and out of the door with various bags and syringes full of fluids. The ER doctor would walk into the room every few minutes, sit in the corner and watch Brooklyn for a period of time with concerned eyes, and then leave again. I'm used to nurses hurrying in and out of a hospital rooms, but the doctors consistent presence made me nervous. I had the very sudden realization that what was happening was very serious and that Brooklyn was declining very quickly. As people rush around us, I lay in her bed with her, stroking her bald head and wiping her tears away, telling her that she would be okay. She kept telling me that she was ready to go home.

At about 4am they moved a sleeping Brooklyn up to the oncology floor, I was greeted by all of the nurses we had come to know during Brooklyn's diagnosis stay six months before. My back went up as we wheeled Brooklyn past the room she had been diagnosed in. If I never see the inside of that room again...

The next morning it was as if nothing had ever happened. Brooklyn was her normal cheeky self again and wanted bacon and eggs. I, however, was a walking zombie who hadn't so much as seen a bed in over 24 hours. We were informed that Brooklyn would need round the clock antibiotics for four days to treat a very fast moving infection,  however I have just been informed that her blood counts are low and we should expect to be here for more like 7. It's a little less than pleasant. They have placed Brooklyn in isolation because she has a residual cough from that fluke cold from a few weeks go. So whenever anyone enters our room they have to dress like they are preparing for the black plague. This also means that she can not leave her room. Additionally, because she is under constant observation people walk in and out of the room all day and all night long. Ironically enough there is surprisingly little rest to be had in a place that emphasizes the importance of actually getting rest.

We are obviously where we need to be. I will not complain about Brooklyncurrent situation because we are just so lucky that the doctors and nurses figured out what was up with her and were able to pull her out of it as quickly as they did. I remember at one point during the commotion thinking about what would happen if she continued to decline at the rate she was going and it scared the crap out of me. Her 3rd birthday is on Saturday. She is still expected to be in isolation. My heart breaks for her because she's been so looking forward to blowing out her candles this year. There will be more birthdays, but there will never be another Brooklyn and so I am counting my blessings this week.

Delayed Intensification Is the Worst

We are currently four days into Delayed Intensification and already we have experienced a few very unsettling setbacks.

Day 1, Tuesday started off with a lumbar puncture with chemo, a dose of Vincristine and a dose of Doxorubicin. Easy enough, except it took 7 hours of waiting to be done with our scheduled appointment. By the time we got home we were both physically and emotionally drained.

She's been receiving medication four times daily at home. The very first morning, she promptly threw up all of her meds. Today I looked at her prescription and found that I have actually been erroneously under dosing her steroids by half! The nurse had told me to give her the same amount I gave her in the beginning of her treatment, but it turns out they actually doubled the dosage for this one week pulse. I seriously hope this doesn't have a negative effect on her treatment.

THEN!!!!!

Today her dad took her in for a dose of Peg Asparaginase. A drug that has to be given on day four. A drug that she has taken in the past. A drug that the moment it hit her IV today caused this to happen:

My husband sent me this picture in a text message starting with "First of all, she's okay...". Apparently her body built up antibodies the from the first dose of Peg so now she's developed an allergic response to it. The solution? Because it's a drug she absolutely must take, they will give her a modified version. Asparaginase without the Peg, is how it's been explained. The unfortunate bit is that instead of one dose, she'll need SIX! One every other day for the two weeks.

I feel terrible that my little girl went through that and even worse that my husband had to watch it happen. He said that one minute she was just sitting there coloring and then a split second later her face washed out, her arms and legs turned bright red and she was gagging for air. Within seconds the room was filled with a dozen people including three doctors. They gave her an epi pen, IV benadryl and made her sit under observation for the rest of the day.

We were lucky that her medical team was so quick to act, but I think it has shaken us a bit. I thought to myself throughout the afternoon that I had only briefly said goodbye to her when she left for a seemingly routine visit early this morning and all of the "What If's" began to flood my mind again.  Brooklyn is sailing through her treatment, but from time to time we are reminded of the reality of what has happened to our child and how scary this disease truly is.

The Incredibly Anticlimactic Start of Delayed Intensification

Well, today did not go at all like I thought it would, and really, has it ever? I don't even know why I act surprised anymore, it's all very par for the course.

As we were driving into Children's today, I received a phone call from the clinic. Brooklyn had been scheduled for a lumbar puncture with chemo. It was news to me, no one had even mentioned such a thing at the last appointment. For those who don't know, a lumbar puncture with chemo requires at least 8 hours of fasting followed by anesthesia. I, of course, had just fed Brooklyn a gigantic plate of bacon and eggs thinking that it would be the last thing she'd ever willingly eat for the next two months. Apparently, our oncologist had ordered the LP two weeks ago. An order that disappeared into a black hole the moment it was written. Then yesterday they came across the misplaced order and put her on the schedule last minute. Except that no one ever called to let us know that this had transpired.  Lots of finger pointing took place and finally the doctor threw up her hands and said fuck it, lets just try this again on Tuesday. So that is what is happening. Tuesday.

I did get to take a look at the next road map. Its a doozy, but still not nearly as craptastic as the first month was.

Six weeks. It looks like this-


-1 dose of Peg asparaginase and an LP with Chemo in Week 1

-Once weekly doses of Vincristine and Doxorubicin (I've been informed that this new drug is nicknamed "Red Devil", which, really is quite comforting)

-Steroids, 7 days on, 7 days off and 7 days on again. (I'm currently stocking up on Avocados and frozen pizzas)

-An antacid once daily to counteract the steroids

-An anti-fungle FOUR TIMES DAILY!

The doctor says we can expect her to be pretty sick and tired, and the rest of her hair could fall out (there isn't much), which, honestly, is the least of my worries at this point. Also, this Red Devil shit is supposed to turn her tears and urine red. Look out for Brooklyn's debut in the next big Korean Horror film.

 What is left of BK's scraggly head of hair.

This is the home stretch, we are so close to long term maintenance I can almost taste it. Hopefully, by July we will not only be celebrating our sweet girls third birthday, but also celebrating the close of this chapter in Brooklyn's fight.

Half Assing it Through Phase III

Well, we are three weeks into Interim Maintenance and I wish I could say it's gone smoothly thus far, but then I would be lying.

Here's how things should have gone; Brooklyn would receive a dose of Methotrexate and a dose of Vincristine every ten days. The doctor would raise the dosage on each visit until Brooklyn began show side effects from the chemicals so that by the fifth dose she would be at the highest dose her body could tolerate.

What actually happened; Brooklyn received her first and very lowest dosage of Vincristine and Methotrexate and her immune system immediately collapsed.

What does that mean exactly? I can't really answer that questions because even her oncologist is perplexed. In the short term, it means we are officially delayed...er, half delayed, I guess, because they gave her the vincristine but not the methotrexate. They won't really be playing around with her dosage until her immune system is back up. It also means that we are in an isolation bubble again until I here otherwise. Bah!

It's ridiculously frustrating, tonight I spent the entire evening taking her temp every 10 minutes like a complete nutjob because I was certain she was on the verge of spiking a fever. It went from 99.9 to 100.3 to 100.4 then back down to 99.8. I checked before bed and it was all the way down to 98.9 so I guess she was just running warm? Anyway, being neutropenic is no bueno and it turns me into a neurotic mess. We are supposed to head back into clinic in 10 days and lord help me if her numbers aren't back up I might just have tantrum right then and there.

In the mean time, let me tell you about little miss Brooklyn. My daughter. I have never, ever seen Brooklyn behave as normal and happy as she has in the past three weeks. Not only has she been completely free from side effects (no vomiting, exhaustion, or temperament issues), but she's doing things that actual normal two years do. The kind of crap that would otherwise annoy the shit out of the parents of a healthy kid but absolutely thrills me.

Yesterday I caught her rooting through my purse and when I asked her what she was looking for, she stuffed her hand in her pockets, batted her lashes at me and said "chocolate."

When I ran into the living room the other day to a screaming baby and Brooklyn huddled in the corner "sweeping" with a broom I shouted "Brooklyn! Did you hit you sister in the head with that broom?!"  She turned to me, grinned and shouted back "No! In the nose!!!"

She's walking, talking trouble. Feisty as hell.  and I can' say I mind one little bit.

The Start of Interim Maintenance

I've been fretting since the beginning of this week.

Here's why.

Look familiar? Yeah.

I was tempted to write a blog post about these new bruises I recently discovered on Brooklyn's shins last Sunday, but held back. In the past this blog has served as an excellent source of foreshadowing and I thought it best not to create a potential guessing game of whether or not we were looking at the R-word. It's better if you don't allow your mind to take you there.

Anyway, you'll be happy to know that Brooklyn's blood work came back perfect. She remains in remission. Of course I was a gigantic ball of nerves as we waited for her oncologist so when she finally walked through door I practically shouted "IS HER BLOOD WORK OKAY?!". She assured me it was, and that the bruises likely have less to do with the fact that she has cancer and more to do with the fact that she's been trying to keep up with her five year old half brothers hard playing ways.

So today begins phase three, also known as Interim Maintenance. It's supposed to be easy, but I suspect it will be hard on poor Brooklyn as one if the chemo meds she'll be receiving is the same one that caused her jaw, knee and back pain during phase one. I'm walking out of this clinic armed with painkillers just in case she responds the same way this time around.

This is interim maintenance-
Two shots every ten days for 6 weeks
Antibiotics on the weekends

You are reading correctly. No more chemo home care for the next 8 weeks! I could jump up and high five the air right now. So here we are,  just plugging right along. As per usual, Brooklyn is kicking cancers ass like a champ in the iconic pink headphones, striped beanie and hello kitty tee-shirt that has become somewhat of a uniform these days.

We are Lucky

I had a moment, sometime shortly after the beginning of Brooklyn's treatment, when I was hauling ass between her oncology visits at Childrens, Indie's early term pediatric visits in the Valley and my OB postpartum appointments in Pasadena, where I thought-

"What if we didn't have this beautiful system of support made up of our friends and family? What if we didn't live in a community that offered us not one, but perhaps five different treatment facilities that offer pediatric oncology services? What if we were not a young couple working to make our baby healthy again, but instead a single person struggling to figure out how to both save their child and feed their family at the same time? What if we had shit insurance? What if we didn't have transportation, daycare, money for prescription copayment or hospital parking?'

There are thousands of "what ifs". They are all terrifying to think about, I promise, the most terrifying of which is- 

"What if I were doing this alone?"

Enter The Andre Sobel River of Life Foundation (Andreriveroflife.org). This group has earned mad respect within the juvenile illness world, and why not? Look that their mission statement!

When no other resources are available, social workers at our affiliated children’s hospitals send us urgent requests on behalf of single parent families in financial crisis. We respond immediately and without additional paperwork, because their social workers have already verified their need. The variety of requests range from essentials, such as food, transportation, utilities, and medications not covered by insurance to funds to protect a family from eviction or foreclosure.

We respond in 24 hours “when compassion can’t wait.”

Our River enhances and sustains lives in many other ways. We will advocate for airline tickets for a grandparent coming to help, or buy a wig for a self-conscious teenager returning to school after chemotherapy, or pay for ballet lessons for a neglected sibling. Instead of restriction, we give as freely as our River will allow. Contributions keep our River flowing. Please click below to make a gift.

I can not tell you how dark the days leading up to, and following Brooklyn's diagnosis were for us. Doing it alone would be completely unfathomable. Organizations like this exist for the soul purpose of helping single parent families. There are very few government resources available for parents of sick children who are forced to give up their jobs as a result. I would know.

(Now it's time for me to give you the shake down) Give your money to this Andres River of Life! I swear I have no horse in this race. Donations made to these people will not cure childhood cancer, nor will it pay my bills. It may, however, spare someone the heartache of having to choose between their sick child or a job. It might prevent a single parent from going into full on panic mode when their kid spikes a fever in the middle of the night and they have to rush into the ER. This organization can not run without donations. This organization helps people in dire straights.

OH LOOK, I FOUND THE DONATION PAGE FOR YOU! 

 https://app.etapestry.com/hosted/AndreRiverofLifeFoundation/OnlineDonation.html

You can make a donation in our sweet Brooklyn's name or you can make one for yourself, either way you'll feel awesome, and someone will be eternally grateful for you. Do it!

About Last Week...

Well, we made it out of the hospital in one piece, but it was no easy feat. It took the entire weekend to fully recover from Brooklyn's 18 hour ER stay followed by a night spent in the Hem/Onc ward. They finally released us on Thursday night after it was determined that Brooklyn was pretty severely dehydrated. Her stomach had stopped functioning entirely so she refused to eat or drink anything. This in turn caused her heart rate to be as elevated as it was. We still don't know what caused the fever, be it viral or bacterial, the antibiotic kicked it somehow. It's really bizarre, the cultures and blood tests came back negative for every common illness. We will likely never know what caused her temp to spike like that, but I'm glad it happened because I would have never known her heart was working overtime if we hadn't had to rush to the hospital.

So. Several bags of saline and many doses of laxative later, Brooklyn's heart rate went down. She was on the mend and headed home. I really have to stay on top of her about pushing fluids which has become a full time job these days.

I wish the drama ended there. It didn't. The next morning we returned to Children's at 5:30 am for Brooklyn's weekly lumbar puncture. When the nurse went to access Brooklyn's PICC line, she found that she was unable to flush it with saline. Three more nurses tried unsuccessfully and finally the hospitals "Central Line Guru" was called in. She did all sorts of voodoo on the damn thing and finally determined that the line was clotted and needed to be removed. She then called up our oncologist, Dr. Baskin and announced in her thickGerman accent "This child needs a chest port!" I guess Dr. Baskin approved because the Guru hung up without saying another word. Without hesitating, she walked over to Brooklyn and pulled out her PICC line. You could see the blood clot extending through the entire length of the 12 inch tube that once led directly to her heart. It was clear that the nurse the night before had failed to flush the line with Heparin, the one thing that keeps the PICC from clotting, when she unhooked Brooklyn's saline lock.

This frustrates me for multiple reasons. Mainly because I have spent the better part of two months OBSESSIVELY taking care of that stupid PICC line to make sure something exactly like this didn't happen and all it took was one overextended nurse to undo my weeks of fastidiousness . Additionally, it means that Brooklyn will now have her new central line for the entirety of her treatment as opposed to the 4-6 month timeline we were given in the beginning of all of this (the port sits under the skin in the chest and requires surgery to remove). On the bright side, I will no longer have to do PICC home care because the port is maintenance free. Plus she can bath and swim now, which I know makes her happy (bath time had become quite miserable since the PICC could not get wet).

Anyway, we are back on track following a couple of speed bumps. I have no intention of ever returning to the ER again. I hope that Brooklyn's treatment continues on an incident free path after this last week.

What's Going on with Brooklyn?

I really just need to learn to keep my mouth shut. Last week I sat in front of our oncologist and actually said "knock on wood, but we've just been sailing through treatment with very little incident." Foolish me. So it's only natural that we should land our asses smack dab in the middle of the ER at 9pm last night. I had mentioned before that Brooklyn's appetite was virtually non existent since she started consolidation. Well yesterday she began acting strangely. In the late morning she was sitting next to me on the couch and suddenly started shaking. When I went to pick her up she pushed away from me screaming "no mama!". I took her temp, it was normal. I gave her a bit of anti nausea medication hoping that she was just feeling a bit sick. She seemed to pull out of it.

After nap time she woke up screaming bloody murder. She told me her knee hurt, so I immediately took her temp. 99.5, which is her typical baseline, so totally normal. Then I gave her some Tylenol and called the doctor for the second time in two days. They told me she was probably constipated and to give her a laxative. I remained unconvinced, but followed their instructions anyway. I know this child better than anyone else, I know when something is wrong and I was 100% certain that this time there was something else going on here.

Fast forward to bed time. As I'm tucking the kid in for the night, just before I pour a second glass of wine for myself I think "I should probably take her temp just to be certain". And so I do. 101.2. The hospital guidelines say to call in anything over 101.3. I knew we were headed there. Five minutes later I take her temp again. 101.5. Fuuuuuuuuuuck. So I call the on call oncologist.  I am told to come to the ER immediately. So I pack up the kids, cork that bottle of wine and speed the whole family to the emergency room in the middle of the night. The place is pack. I mean, like no standing room packed. So I immediately put a mask on my little chemo kid and begin frantically searching for a safe corner. Apparently, cancer is serious to these people because I never even had time to sit down in the waiting room before they called Brooklyn's name. We were ushered into a room where the nurses did her vitals and blood draw. The doctor saw us almost the moment we settled in and announced they were setting her up for admittance just in case.

At this point Avi arrived from work to take the baby back home for the night. We were told that everything looked good and they would probably give her an antibiotic and send us home. Again, foolish thinking. An hour later they were hooking her up to a heart monitor, sending us for chest X-rays and an EKG. She came in with a heart rate of 200 and it had settled to 180. They would love for it to be down to 120. What could be causing this issue? They have no idea. Everything came back normal. The labs, the X-rays, the EKG. Her heart is just racing for some reason.

The most infuriating part of all of this is the fact that the hospital is completely full and there is not a bed to be found. Brooklyn and I have spent the past 15 hours camping out in the ER. We may be here for hours more. At least she has a private room. But it's not the most comfortable situation in the world. I'm beginning to wonder if I'll ever sleep again, I'm so exhausted. We still don't know what's going on with Brooklyn, and I'm not leaving until we find out.

If I've learned anything from this incident, it's that I should always follow my gut when it comes to my kids.

The Many Faces of Brooklyn

I was looking at some photos of Brooklyn taken from over the past couple of months and I was actually kind of shocked. I guess seeing her everyday makes it difficult to see the changes that have taken place in her since her diagnosis. In retrospect I think she was very underweight in the beginning due to her undiagnosed condition and it had gone completely unnoticed by me. Now she is a solid 31 pounds which seems much more appropriate for her age and height (see last photo). It's quite amazing how fast those steroids take effect, though. Even after a couple of days on them she was already looking a little bigger.

 Just a quick photographic timeline:

                                       Brooklyn the day before she went into the hospital

                                                 Brooklyn two days after starting treatment

Brooklyn three weeks into treatment

Brooklyn on the last day of Induction

Brooklyn two weeks after Induction