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.