Sarah Defies Gravity

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

Archive for the month “July, 2012”

Grooowin’ up

I’m making a concerted effort to blog lately for two reasons–the first is that it’s easier to do so when I have unlimited access to a computer and that I really enjoy doing it as a way to de-stress and do something I love (write). The second is has to do with writing as well, but in a slightly less noble way.

When I was a kid I wanted to be a writer the way other kids want to be firemen or doctors or Batman. I was that kid getting trouble in the back of the classroom for writing stories when he should have been doing his math worksheets. It wasn’t just in elementary school, either–all through my life, it’s all I ever really wanted to do.

I think that when people I knew back then talk to me now they think I stopped writing because I didn’t like to anymore, but that’s not exactly the truth. I didn’t stop writing because I didn’t like to anymore, I didn’t stop writing at all. I stopped acting like I could make it professionally as a writer because I grew up and got cynical.

“You need a real job,” they said, and I worked in a real job, for two and a half years, until Sarah came along and then it wasn’t an option anymore (and besides that, it was kind of soul-crushingly miserable). “Just give up,” they said. “You’ll never make it.”

Of course I don’t think anybody who ever said that was trying to crush my soul, of course, but merely be practical. But sometimes…fuck practicality.

The point of this is that I’m writing again, and this is good “mental floss” if you will, a good way to practice and rehearse. Do I think it’s going to go anywhere? Well…no. I don’t flatter myself in thinking that I’m that good. But sometimes you have to chase your dreams, sometimes you have to do things that you want to do, and this is what I want to do.

(Jeez, Christopher, when did this blog become all about you? Narcissistic douchebag.)

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” 😦 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!

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