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.