Howdy friends, old and new! It's been a few months, which I hate. As someone who really gets a release from writing, not doing so for this long has not boded well for my psyche! Life has been HECTIC ya'll! In any case, I'm back, and hoping to be back a lot more in the coming months.
In case anyone missed the big (BIG) news- we are expecting another little monkey this summer! Yep- another little C to complete our brood. We are beyond excited (and at almost 7 months, I'm REALLY looking forward to the end of summer...what? it's only the end of May? I CAN'T HEAR YOUUUUU! LALALALALA). Ok, my temper tantrum is over. So back to the point at hand...three kids. THREE KIDS PEOPLE!! Of course it hasn't been the best of times for me to be pregnant. Ken has been in a clinical trial at MSKCC since the beginning of February, and the hectic schedule at the beginning of the trial pretty much forced him out on disability for a few months. He's back at work as of this last week, and while it's been nice to feel a little "normal"- being 26-27 weeks pregnant, home with two very busy little people for the first time since before I was showing, has been a real challenge. Of course, it's a challenge for any pregnant Mama with other kids at home, but me being slightly psycho off my meds doesn't really help the situation. Yep, I'm off the loft as I like to say. Our sweet little fellow on the way (oh...did I forget to mention? It's another crazy little BOY!), wasn't exactly a planned sweet little fellow, so dropping the zoloft cold turkey wasn't fun (and really still isn't...no wine? no loft? Yep, I'm off my rocker). I know what you're thinking- why??? WHY C family? Why get pregnant? The kids a miracle, and I'll tell you why...
I've wanted 3 kids forever. In all reality, I wanted 12, but I knew 3 was about as high a number as my hubby was willing to go. Of course, after Ken was diagnosed in 2012, I couldn't even let myself imagine we'd have any more kids. It was off the table. No mas bebe. It crushed me to even think about. We've had a lot of ups and downs over the last (almost) 3 years. Good scans, bad scans, ok scans. We endured the stress of selling and buying homes; which I genuinely did NOT know was THAT stressful until we did it. Maybe it was our life situation at the time that made it so much worse- Ken was working from home full time, couldn't drive, and in all truth was probably still, on some level, recovering from his surgery...and if he wasn't, I was. I lost 8 lbs in the two months it took to sell our house, and put myself in the hospital with a panic attack on the day we went under contract on both homes. Our parents got sick, our parents got better, we finally spent some down time with friends...of course, it was around that time we figured out I was pregnant. I was 3-4 glasses of wine deep on Christmas Eve when I realized I was supposed to get my period that day. Feeling pretty confident that I wasn't expecting, I took a test (I always keep the dollar store ones on hand out of paranoia...rightfully so, apparently). I walked away and enjoyed the company at my house...it was hours later, when I went in my bathroom to brush my teeth, that noticed TWO PINK LINES. I thought maybe I was drunker than I thought I was, and took another test to make sure I wasn't seeing things. Nope. TWO PINK FRICKEN LINES! Our first reaction was not "Yayyyy!" It was more..."OH SHIT." Something we both laugh at now. I'm pretty sure that might have been our reaction even minus the brain tumor growing in Ken's head, but that part certainly didn't help.
It took about a week for things to sink in, but by New Year's Eve, Ken was (drunkenly) excitedly texting his parents that if all went well, they'd be babysitting three kids the following year for count down (we are going to a wedding of some fantastic friends). Just a few weeks later, when we were told about this clinical trial that Ken is currently enrolled in, we also found out that on this particular medicine, baby making is not allowed (it could have, like, 7 heads or something...). And even if he discontinued the medication, isn't allowed for a year or two following...which would bring us over the mid-30's hump, with kids both in the middle of elementary school, and the likelihood of having any at that point was nonexistent. So if it weren't for *someone* up there/out there knowing better than us, the dream third baby would have been an impossibility. I catch myself tearing up at the notion that something I'd always wanted so badly, something I'd given up hope on having, something I thought not really possible; somehow wasn't just possible, he's there...kicking me in the ribs as we speak. Now I just have to get him here safely at the end of the summer (yeah, THAT isn't weighing on my mind, nut job that I am...).
So as you can see, on top of every day busy-ness, we've had a busy year so far. After an intense first round with the clinical trial, we took the opportunity of Ken being home to whisk the kids away to Disney World, we road tripped to see friends in other areas, and Ken fixed up our back yard to be a relaxing oasis. You'd think things would be winding down, but really, they're staying just as busy, which to me, is a Godsend. Idle hands and all...
Now? Now we're gearing up for summer! My sweet baby girl is graduating Pre-K in a couple of weeks (which, being all hormonal, means I tear up a lot...I mean it, A LOT), she's going to camp for the first time the following week, and in a short three months will start Kindergarten. When I say I'm going to be a mess the day the bus rides away with her in it, I mean it ain't gonna be pretty. With a newborn in a carrier, I fully plan to throw the boys ( BOY(S) !!!!!!! I can't even...) in the car and stalk my child to school. Go ahead and laugh, people, someday, it'll be YOU!
I hope everyone out there is doing well! I will give an update with anything Ken related as it comes. For now things have been stable (which even saying out loud gives me the shakes), but we'll give updates as they come. For now, we've signed up to walk in the NYC Brain Tumor Walk at the end of June. I'll give more info on that as I get back into the groove this week ;) Thanks to ALL for the positive vibes we've gotten over the last few months, we are so lucky to know so many great people! XOXO!
It's a living thing...
Saturday, May 30, 2015
Sunday, February 8, 2015
IDH what?? IDK!
Alright friends, here's the lowdown...back in October, we found out that Kenny's glioma was once again growing. With the hope that it was growing more slowly, they moved his scans up from every six months to every three. Unfortunately, at the scan in January, they discovered that the growth is happening quickly enough to see after only 3 months. BOO!!!
They let us know that his options, for now, are radiation therapy, or clinical trial drugs. Both sounded pretty scary. However, after lots of research, and information thrown our way, the clinical trial sounded pretty promising. At the very least, attempting it would save him radiation for the time being. The reason his neuro oncologist would really like to push off radiation is because it's a one shot deal...and even then, he said, the results were unpredictable (as in, it may only stop growth for a matter of months or a few years). So here we found ourselves, 2 years after we thought we'd be done talking about it (albeit foolishly), and making more big decisions.
So this past Friday, after multiple trips to Sloan, a few scans and lots of talking about it, Kenny signed on the dotted line. He is now on the fast track to beginning the clinical trial...fast as in he begins on TUESDAY. Yes...as in two days from now. Friday became a whirlwind of meeting doctors, researchers, trial RN's, Oncology pharmacists, and a ton of pre-trial testing (blood, 2 ekg's, echo cardio gram, the works...). By the time we got home Friday night, we were wiped, yesterday we were slightly more awake, and today we're feeling human and ready to prepare. It's going to be an intense 3 month regimen of appointments at Sloan to monitor his body's response, and constant testing to make sure his body is handling it all well. And if any of you know Ken, you know how much he LOVES needles (HA!). It will be a lot of work for Ken, our little family, and the amazing family we have surrounding us that are helping us in every way possible (from kid sitting to massive amounts of moral support). But in the end we're hoping for a big payoff. Nothing ventured, nothing gained, right?
Now for the science-y part of the tale. The hope of this medication is that it stops tumor growth (and maybe even shrink it a little). How?? Well, 70% of Gliomas have recently (recently as in the last 5-7 years) been found to contain a genetic mutation called IDH1. Not only is it in Gliomas, but in a lot of cancers...liver cancer, sarcoma, and a close relative of IDH1 (named IDH2) exists in leukemia. Now, to anyone with a very non science background (myself HUGELY included in this), this is all very confusing, but I'll try my best to keep it in"non science genius" words.
This mutation is a very curious thing. I thought about explaining how the WHOLE thing works, but it would extend beyond my scientific reach to explain it correctly. But the bottom line is that this mutation preys on cells, in essence, that are suffering an identity crisis. These are "primitive" cells that never quite develop, and the mutation helps it develop into cancer/tumors (this is simplifying the concept in a big way, but it's the gist).
Now, the medicine they're testing is promising in some very key ways. Unlike typical chemotherapy, this drug is considered a biologic. As in, it's purpose and intention is not to kill a single cell, but to heal the cells (or in this instance, force them to mature into healthy cells). That's right...the premise and hope for this medication is to treat cancer without killing it. Pretty crazy, right??? Not only that, but it's considered a targeted therapy. Whereas typical chemo would be administered and effect the body systemically (as a whole), this targets only the mutation. We have high hopes for this medication to work, but trying to keep level heads since it's still a very new concept. However, in leukemia patients last year, the clinical trial was found to put almost 50% of patients tested in full remission, without damaging their bone marrow.
I have plenty more I could explain, but Kenny has informed me that what I've said already has probably bored people to tears, so I'll keep the science stuff to a minimum for the time being. However, if you're at all interested, please feel free to read some of the below articles on the topic (he is participating in the trial by Agios).
http://investor.agios.com/phoenix.zhtml?c=251862&p=irol-newsArticle&ID=1829945
http://www.agios.com/pipeline-idh.php
As for every day life, we just keep on, keeping on. If anything the last couple of years, we've learned to live life in between appointments. What else can we do? I'll check in with, well, lots of stuff coming up. It's not exactly how I wanted to get back into writing, but as those brilliant Rolling Stones say, "You can't always get what you want, but if you try sometimes, you find you get what you need." We need some good vibes friends, so send 'em if you got 'em!
They let us know that his options, for now, are radiation therapy, or clinical trial drugs. Both sounded pretty scary. However, after lots of research, and information thrown our way, the clinical trial sounded pretty promising. At the very least, attempting it would save him radiation for the time being. The reason his neuro oncologist would really like to push off radiation is because it's a one shot deal...and even then, he said, the results were unpredictable (as in, it may only stop growth for a matter of months or a few years). So here we found ourselves, 2 years after we thought we'd be done talking about it (albeit foolishly), and making more big decisions.
So this past Friday, after multiple trips to Sloan, a few scans and lots of talking about it, Kenny signed on the dotted line. He is now on the fast track to beginning the clinical trial...fast as in he begins on TUESDAY. Yes...as in two days from now. Friday became a whirlwind of meeting doctors, researchers, trial RN's, Oncology pharmacists, and a ton of pre-trial testing (blood, 2 ekg's, echo cardio gram, the works...). By the time we got home Friday night, we were wiped, yesterday we were slightly more awake, and today we're feeling human and ready to prepare. It's going to be an intense 3 month regimen of appointments at Sloan to monitor his body's response, and constant testing to make sure his body is handling it all well. And if any of you know Ken, you know how much he LOVES needles (HA!). It will be a lot of work for Ken, our little family, and the amazing family we have surrounding us that are helping us in every way possible (from kid sitting to massive amounts of moral support). But in the end we're hoping for a big payoff. Nothing ventured, nothing gained, right?
Now for the science-y part of the tale. The hope of this medication is that it stops tumor growth (and maybe even shrink it a little). How?? Well, 70% of Gliomas have recently (recently as in the last 5-7 years) been found to contain a genetic mutation called IDH1. Not only is it in Gliomas, but in a lot of cancers...liver cancer, sarcoma, and a close relative of IDH1 (named IDH2) exists in leukemia. Now, to anyone with a very non science background (myself HUGELY included in this), this is all very confusing, but I'll try my best to keep it in"non science genius" words.
This mutation is a very curious thing. I thought about explaining how the WHOLE thing works, but it would extend beyond my scientific reach to explain it correctly. But the bottom line is that this mutation preys on cells, in essence, that are suffering an identity crisis. These are "primitive" cells that never quite develop, and the mutation helps it develop into cancer/tumors (this is simplifying the concept in a big way, but it's the gist).
Now, the medicine they're testing is promising in some very key ways. Unlike typical chemotherapy, this drug is considered a biologic. As in, it's purpose and intention is not to kill a single cell, but to heal the cells (or in this instance, force them to mature into healthy cells). That's right...the premise and hope for this medication is to treat cancer without killing it. Pretty crazy, right??? Not only that, but it's considered a targeted therapy. Whereas typical chemo would be administered and effect the body systemically (as a whole), this targets only the mutation. We have high hopes for this medication to work, but trying to keep level heads since it's still a very new concept. However, in leukemia patients last year, the clinical trial was found to put almost 50% of patients tested in full remission, without damaging their bone marrow.
I have plenty more I could explain, but Kenny has informed me that what I've said already has probably bored people to tears, so I'll keep the science stuff to a minimum for the time being. However, if you're at all interested, please feel free to read some of the below articles on the topic (he is participating in the trial by Agios).
http://investor.agios.com/phoenix.zhtml?c=251862&p=irol-newsArticle&ID=1829945
http://www.agios.com/pipeline-idh.php
As for every day life, we just keep on, keeping on. If anything the last couple of years, we've learned to live life in between appointments. What else can we do? I'll check in with, well, lots of stuff coming up. It's not exactly how I wanted to get back into writing, but as those brilliant Rolling Stones say, "You can't always get what you want, but if you try sometimes, you find you get what you need." We need some good vibes friends, so send 'em if you got 'em!
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