Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

Archive for the category “cancer”

I would have sang out your name in those old high school halls…you tell that to Gail, if she calls.

I think it’s finally beginning to hit me, almost 2 months later, that I don’t have Dec anymore. Probably because for the first month and a half he was always here if I needed him, right there in Queens prepared to take our daughter whenever I needed and fulfill his once-weekly obligation to see her on the weekend, and take her to her appointments once a week, and now he’s not here anymore. He’s 2500 miles away living his life and I’m 2500 miles away trying to pick up the pieces of ours.

And it’s hard, you know. It’s hard. I didn’t expect it to be so hard and I don’t know how to cope with it. With appointments upon appointments and work and bills and the always-present possibility that Sarah could, at any point, relapse. With the ins and outs and intricacies of parenthood, even with Down Syndrome and cancer removed from the equation.

I want him here with me. I want him here with us. We were supposed to be a family. I’ll make it, somehow, I know I will. I’ll make it and Sarah will make it, but the idea of someday “making it” doesn’t exactly make up for the fact that I’m drowning under a pile of responsibilities and uncertainties and things that are too hard for me to manage in the now. I most certainly can see the forest for the trees, the maze for the corn…but I can’t seem to find my way out of it.

This Road I’m On

Let’s face it…2012 sucked.

I thought 2011 sucked, and in some ways, 2011 did suck pretty hard. But for the most part, 2011 was full of joy, full of wonder, full of hope.

2012 was consistently, entirely, completely full of suck and fail, and by the time we were 8 months in, I was beaten, battered, and completely destroyed.

But you know? 2013 is going to be much, much better. Thanks to some wonderful people who picked me up when I was fallen down and glued me back together when I was completely broken, 2013 is going to be like a better version of 2011, full of hope and promise and joy and life.

I’m going to be honest, because I pride myself in being honest on this blog–in part because part of the mission of having this blog is to present an honest, informative, realistic portrait of Down Syndrome parenting to the world at large (as opposed to a fluffy, sunshine and rainbows portrait of Down Syndrome), and in part because it actually makes me feel a hell of a lot better–for the first time since Sarah was a newborn, last month made me really hate the fact that she has Down Syndrome. Because I did a bad thing. I began to blame Down Syndrome for all of the things that happened. If Sarah didn’t have Down Syndrome then she wouldn’t have gotten cancer (not true). If Sarah didn’t have Down Syndrome and cancer then maybe Dec wouldn’t have gotten so stressed out and he wouldn’t have left us (okay, maybe true…but aren’t I better off without him if that’s the case? YES). If Sarah didn’t have Down Syndrome I could have a second child and go to college and all of the millions of other things I desperately wanted to do that I couldn’t–or thought I couldn’t–because Sarah had Down Syndrome. I was beginning to become bitter and resentful about Down Syndrome and how it was affecting my life.

There’s still a part of me that resents Down Syndrome for what it did to my life, but things are working out. I’m not trapped in a city I hate, alone and scared…I’m moving back home at the end of the month. I’m not going to be stuck in a dead end job with the end goal of strictly supporting Sarah. I’m going to university in January of 2013 to study science and, eventually, genetics.

And Sarah? Sarah is doing wonderfully. Sarah just started crawling…and saying “papa”. The word is teeming with possibilities for both Sarah and I, and I can’t wait to see where the road we’re on leads us.

I just wanna be there when you’re all alone, thinking about our better days when you had it in your bones

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(DISCLAIMER: any products linked in this blog post were purchased by Dec and myself to make our lives easier and I don’t get any money from the companies for pimping them out.)

It’s amazing how quickly life has gone back to “normal”, albeit a “new normal” with Sarah home. We spent our first two days at home, but by Saturday, we were ready to get on with the rest of our lives and decided to go out for some shopping and dinner. Sarah was armed with an adorable hat that combines both a giant flower and a sassy print (my two favorite things for my little lady), a very stylish pediatric mask courtesy of the grandmas and a stroller sign from Kind Signs and she did great! While I’m sure that there were some people who think we’re overly cautious new parents, I know that it’s the best and safest way to bring Sarah out in public.

I don’t want life to stop because of cancer. It did stop, for the three and a half months Sarah was in inpatient treatment and I don’t want it to be stopped for the next three years. I want her to be able to go out and experience life in this beautiful city and I want her to be happy and feel “normal”, especially as she gets older and realizes that he life is different from other kids.

Her first round of maintenance chemo is coming up tomorrow. I’m not sure what the protocol looks like for that, I know that we’re supposed to go to the clinic at 8:30 am (ughhhhhhh) and I’m sure the lovely nurses there will give us the rundown.

Sarah is back in regular therapy now–feeding, speech, and physical. She’s LOVING speech and the ST is very impressed with her progress in that area. She’s testing at about 9 months for speech which is great! I don’t want to talk about her PT testing…too fucking depressing. Suffice it to say that it’s very behind. Feeding therapy is also kind of a bust, but the therapist is an absolute joy to work with. She’s very laid back and easygoing and says that most if not all cancer kids–chromosomally enhanced or not–have difficulties with eating and with food even after treatment is finished because they’re either scared to eat because of vomiting or simply not hungry/nothing appeals to them. She and Sarah did some fun mouthing exercises and Sarah took a tiny bit of juice by mouth. Baby steps, right?

I’m starting to feel slightly more like a Down Syndrome parent again than a cancer parent. There’s still so much that’s different, but I feel a lot more relaxed and like I’m focusing on Down Syndrome and cancer in equal measures. Cancer is going to be very consuming for the next seven years of our lives but I don’t want to be obsessed with it the way I was. I finally worked up the courage to get in touch with the social worker for therapy and I feel like that’s helping a lot. I should have done that when Sarah was first diagnosed instead of trying to handle it on my own. Maybe then there wouldn’t have been so much to fix.

Sarah at (almost) 15 months

Sarah will be 15 months old on Friday! We’ve officially been out of the hospital since this morning and we start the maintenance phase (which includes outpatient chemotherapy, regular blood checks, and anything else that needs done) of her chemotherapy next week. Fun…but at least she’s home!

Due to her hospitalization (having spent 92 of the past 101 days in the hospital) and the things that accompany her illness, her development has basically stalled, and even started to regress in some areas, but we’ve seen surprising progress in other areas.

Physically she’s come to almost a complete stop from where she was pre-hospital. She’s no longer rolling or “scooting” like I reported in her first birthday post–I think because these skills went into disuse she has just forgotten them. We’re going to resume some PT (nothing serious, just low-key, 2x/week) in hopes of getting those skills back. She does sit up like a pro though! She’s reaching for and grabbing objects, and she likes to “study” them up close and go “oooooh!”

She recognizes about 25-30 signs. She signs consistently “mom” and “dad” (I’m mom, Dec is dad…thanks a lot you little shit!), “happy” and “cry”. she periodically signs “please” and “all done”. She’s getting very good at copying and probably copies about 90% of the time when we sign to her. She also responds by very enthusiastically nodding her head or very emphatically shaking it, which is funny.

She DOES speak a tiny tiny bit now! Her first word was “dad” and she will say it periodically if frantically signing “dad” does not magically manifest Dec in front of her. Her ST (one of the only ones we didn’t cut during her time in the hospital) says that she babbles very purposefully and that her formation of sounds is great. She’s a mimic in terms of sounds as well as signs and if you babble at her she’ll repeat it back. We’re thinking more words soon!

She came home on her NG tube. She’s still not particularly interested in eating by mouth and turns her head away or signs “cry” ūüė¶ She has lost 4 pounds since starting treatment and is currently clocking in at 12 pounds 6 oz. We’re hoping that as her treatment dosages are lowered she’s showing more interest in eating and less interest in throwing up and we’ll see some weight gain. She looks like she’s wasting away and it’s so sad.

She’s completely bald and it’s super cute. I put a lot of horrifically ugly giant bow headbands on her head, because I can. Dec thinks that she needs these.

Despite what she HAS lost–weight, skills, her ability or desire to stomach solid food–she has gained some skills and some new friends on the oncology ward, and most importantly, she has not LOST her will to fight, her spunky personality, or the love she has for us. She’s the biggest joy of our life, and we’re so happy that she’s fighting and getting better and home with us. We can’t wait to see how she grows in the months to come!

R-E-M-I-S-S-I-O-N, find out what it means to me

Yes, it’s true…after three rounds of chemo, Sarah’s levels are good enough that she is officially considered “in remission”! We are so excited. Everything is looking so beautiful for us right now–Sarah is in remission, things with Dec and I are better than ever, and all of the negative emotions that were consuming me are starting to go away.

This isn’t the end of the road, of course, just the next leg of the journey. Sarah will now undergo 24 months of maintenance chemotherapy. This will be conducted outpatient and will be a lot easier on us than the treatment has been, but she’s still “sick”. We’re remaining positive about the outcome of maintenance chemo and not worrying yet about relapse or any other nasties. We’re going to enjoy this rather more pleasant leg of the journey and having our sweet, brave fighter baby at home with us!

I’m planning on doing a little post about Sarah’s development and how it was affected by the hospitalization, treatment, etc a little later on, but i just had to blog the good news!

eternity

well, we’re on day 22 here in ye olde children’s hospital. we were supposed to go last week, but even before we were discharged sarah spiked a fever that wouldn’t go down…this seems to be her MO, and her “team” is trying to figure out if there’s some way to prevent it or if it’s just a thing that’s going to happen.

This is our longest hospital stay so far. She’s spent 61 of the 70 days since her diagnosis in the hospital…an eternity, it feels like.

My sister–who I will, someday, I hope, write a post about (right now, four and a half months after her death, i still find it hard to say her name, let alone write anything about her)–spent a lot of her life in the hospital. Probably more time in the hospital than out of it, and there was always this kind of strange feeling that I could perceive after she came home from the hospital, even as a kid. It was like she wasn’t exactly a member of our family, like she was a stranger who didn’t belong in the house with us, like we should bring her back to the hospital because at any moment they were going to come snatch her away.

And that’s how it feels right now, with Sarah…it’s almost a relief to be here in the hospital still because I know that once we bring her home, we’re going to have to bring her back here again, and then again, and again. And even after this part–the chemo part–is finally over, for six years we’ll be a slave to it, for six years we’ll be slave to blood tests and counts and an oncologist who tells us whether or not we’re going to have to sign her back over to the hospital…and then after those six years, even when she’s considered “cancer free” it could still come back at any time, still creep back into our lives at any time.

maybe that’s not the way i’m supposed to be thinking, maybe i’m supposed to be all upbeat and positive; all sunshine and rainbows, but in the eternity of day 22, of day 61, it’s pretty fucking hard not to feel like, at least this way, the cancer beast has won.

I was going to be discharged from the hospital once. And then I took an arrow to the knee.

(sorry, I couldn’t resist the overused meme/Skyrim reference there….nobody took an arrow to the knee!)

So, Sarah’s journey to be discharged this time around seems like it’s neverending. We may be at the light at the end of the tunnel, but we’re also going to have to come back in two weeks or less for treatment, so I don’t know if you can count that as the light at the end of the tunnel or not!

The most recent hurdle has been dehydration. Before that, it was that stubborn infection! She kept spiking a fever even after her antibiotics. I’m just keeping my fingers crossed she doesn’t get c-diff. But dehydration is what we’re looking at now, so we’re stuck here for at least a couple more days while she gets some IV fluids. Our favorite.

For once I’m glad for Sarah’s lack of mobility–she’s still bored here, but at least she’s not a toddler who is accustomed to running around. We haven’t had to modify her activities too much, even though I think she misses having floor time, and of course, going out and seeing all the sights and sounds.

But this is not forever.

Sarah loves the hospital

So much that she decided we needed to come back for a little while!

She was running a low grade fever when she ¬†woke from her nap yesterday afternoon and oncology urged us to bring her in so she could be admitted since it’s probably the start of an infection and her body can’t protect itself. She has been at her diva best–when the nurse tried to put the iv in her arm yesterday night, I was distracting her by doing fingerplay with her–itsy bitsy spider and this little piggy and so on. When she realized what the nurse was doing, she¬†wrenched¬†her hand away from mine, whipped her head around, and¬†screeched¬† at the nurse as if she was telling her to stop this injustice at once!! Fortunately, the nurse thought it was funny.

We are hoping for a short stay and that she’ll have some more home time before she begins her second round of chemo. She barfed everywhere this morning but so far she hasn’t been showing any signs of being really sick other than the persistent fever, so we’ll see.

Fuck you, cancer.

You hear that? I’m calling you out. By name.

Fuck you, cancer. I hate you.

I hate you for taking over my daughter’s body, for making yourself a part of our lives. I hate you for introducing us to the world of hospital stays and cytotoxic chemicals and a tube in my daughter’s nose and down her throat so she can eat. I hate you for preying on the most vulnerable, on those who can’t defend themselves. I hate you for trying to destroy us.

But you won’t.

I hate you, cancer, but I do not fear you. I will not let you own us. I will not let you destroy us. And neither will Sarah. Because you can damage her body, but you will never damage her spirit. She might be less than a year old, she might weigh less than 20 pounds, she may be small and delicate-looking, but brave things come in small packages, and there’s only one thing in this world that I’m sure of: she’s going to kick your ass.

So fuck you.

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