Day 94...and Farewell to one of our own...

It is with great sadness that I report here the passing of one of our own, a fellow cancer warrior, Betsy. Though we only knew Betsy a short while, her spirit and her strength have inspired us all, and it weighs on all of our hearts that she is no longer in the world. I cannot imagine her parents' suffering. You know it's coming, you can feel it's drawing close, but I can only imagine that nothing can prepare you for that final moment, when your child draws his/her last breath. It is unnatural. It is unimaginable. It is unconscionable, and yet, it happens every day. It could have been any one of us.


I am saddened by Betsy's passing, but I am glad that her suffering has ended, and my prayers go out to her family that they may find strength to get through this difficult time and beyond. I don't think it ever gets any easier. I think you just find a way to survive. You take comfort where you can.

I had a perfect day with my daughter and mother, despite Sarah's little broken wing and the pain that ensues every time I move her or hold her in the wrong way. We shopped, enacted a covert, tag-team operation to purchase Lalaloopsy items for Christmas without Sarah noticing, and then came home to play in the yard a little, until Sarah fell and scraped her knees. I gave her a bath, dressed her, and we made popcorn and watched the Lorax, then had a little chat and did some couch-dancing to the kitschy 60's/70's tune that was playing over the DVD menu. We did meds, I made her bed, she sealed her new Happy Napper (she is ever so happy. She has been wanting one of those things for years) and laid down on it to go to sleep. A good day, overall.

Here I am, after a wonderful day of shopping with my mom and daughter, and then playing in the yard with Sarah's sand and water table, newly filled with pink sand (That's right. You read correctly. PINK sand, thanks, Crayola! You made my daughter's millenium! And only $7 for a 20 lb. bag at Walmart? Yes, please!) rushing through Sarah's bedtime story because I'm tired and I have a million things left to do to prepare for a very busy day tomorrow. Cancer gives you enough perspective to realize that life is short and you should enjoy every moment, but even less time to enjoy than everyone else has, because there is so much more to deal with!

Then, Betsy crossed my mind. I am rushing through this moment with my daughter, and somewhere, Betsy's family is wishing they had a moment like this, just one more time. And it could have been me, it could still be me, wishing that I had slowed down, done all the voices, surreptitiously stolen glances at my daughter to catch her reactions, engrave it all into my memory. And I do this, on occasion, but I should be doing it always, even when I'm tired. Because you never know which story will be the last one.

RIP Betsy...we love you!

Day 91...but mostly a long-winded account of Day 90

Okay, so I was totally going to post yesterday since it was Day 90, but yesterday was a non-stop whirlwind, and by the time I got home, got the girl-child to bed and got a minute to myself, I was too exhausted to keep my eyes open, much less blog. You would probably be thankful I waited until today when I've had a whole five hours of sleep under my belt to blog if you had seen the garbled, non-sensical mess that was my brain last night. I could barely keep my eyes open talking to my grandmother about how the day went.

So, here goes, my slightly less addled account of Day 90!

Why are the numbers so important you ask, throng of new readers who were referred by a friend because my blog is so amazing? (Okay, I may still be a little tired) Transplant Day is Day 0. Every day after that counts upward towards Day 100, which, if we can make it that far without complications, will mean that the transplant was a success, and she will technically be out of the woods. That day for us is 9 days from now, on July 7. That is the day that she can have fast food again (although I will tell you why I am a bad mom in a second), when we can start venturing out into the world again (with caution, of course), and when we can breathe a little easier each day that she makes it past without something going wrong. So Day 100 is a pretty big day in BMT land, and we are fast approaching upon it.

Anywho, I haven't blogged much (or at all) since we've been  home because I have been extremely busy trying to settle Miss Boots back into a routine and to settle her back into civilization, since her behavior indicates that she has lost her freaking mind sometimes. Tantrums times ten, hitting, biting, sleep issues, potty training (which we finally have under control, thank GOD!!!) plus trying to keep up on all of the cleaning, dusting and laundry that needs to be done, I am working the equivalent of two full time jobs, at least. And it feels like four. For all those who think I sit around and eat bon bons and watch Dr. Phil all day, or that I should be doing something more to contribute financially, well, I'm trying to find a polite yet effective way to convey the general idea of "kiss my ass", but I guess there isn't one...

Yesterday was just such a day where I think I definitely earned my keep. Day before yesterday,  on Day 89, Sarah had a BMT clinic appointment, nothing unusual, standard routine. The night before that, I was flushing her lines and I noticed some small pinholes in the bottom of her red lumen. I went ahead and flushed it anyway to see if it was leaking, and it wasn't. But just to be sure, I called the exchange anyway, and within minutes, the on-call oncologist called me back. I explained the situation, and she told me that it could probably wait until clinic the next day, so we kept our usual appointment. I promptly explained to the nurse, nurse practitioner and the doctor that her red lumen was damaged, and they decided that while there is still necessity for a central line, Sarah is in the unique position of having two lines, which she no longer needs since she is getting better. So, as the broviac was going to come out soon anyway, and they can get what they need from her port-a-cath, it didn't make sense to repair the broviac when it would just be coming out within a month or so. So they decided to take it out right away. The doctor gave me a choice to take it out then and there, or to wait until the following day (yesterday), because we would have to be admitted since it would be a surgical procedure and it might take a couple of days to squeeze us onto the surgery board since it was non-emergent. So, I opted to go home so that I could pack our things.

"Packing light" for "just a few days" for Miss Boots and I consisted of: A small, fifteen inch duffle bag with clothes for her and I; a small, twelve inch toiletry bag with necessities for her and I; Her large, fifteen inch diaper bag, with necessities for her; a small, ten inch case containing her portable DVD player, DVD's and connection cables; Small, twelve inch Disney Princess duffle bag containing Sarah's toys (about three Lalaloopsies, Castles the Unicorn, who has been present at every single procedure and hospital stay and was not about to be left out now, and her Lalaloopsy magnetic paper dolls, Nintendo DS, crayon roll, etc.); and my purse. Thank God for Graco strollers, which can withstand four years of abuse, being laden like a pack mule with tons of "necessary" crap and still being sturdy enough that we have no need of a new one!

I get a confirmation call from the hospital telling me to be there at 10 am, and alerting me to the fact that they offer free valet parking for the parents (three years later when I have been hauling all of Sarah's stuff in the Graco all the way around the block from the parking structure to the front of the hospital), and I am ready.

Sarah manages to get to bed on time, but stays up for another hour because she is scared, and wants to know step by step what is going to happen to her. So I give her the play-by-play, assure her that she is perfectly safe and that tomorrow is a happy day, because soon she will be able to take a real bath with no Press-n-Seal and swim and there will be no more line flushing, no more home dressing changes, which means less for me to keep up with and less stress for me, because Sarah howls all of the way through a dressing change, which is very distracting! I finally get her to sleep, finish up the packing, and by the time I have a minute to breathe, now I can't sleep because she has me worrying. What if she's nervous for a reason, my happy-go-lucky little girl who worries about nothing? Sarah is fearless. She's been watching Coraline since she was two. She has been fighting cancer since before she was two. She looks me straight in the eye and deliberately defies me on a daily basis. This child fears nothing but the dark and the vaccuum cleaner (Yeah, I can't figure it out, either...), so what if there is something to be worried about? What if she knows something that I don't?

I know the procedure is routine and simple, even more so because the broviac is still new, having just been placed in December, and she still had a stitch in it from when they put it in, so it was a simple matter to just reopen the stitch and pull the line right out. I know that the surgeons are world-class, and that they do this every day. I know she could not be in better hands. I know that this is a good thing, because it is one step closer to normalcy, to a better life for my daughter and myself, but still I manage to worry myself halfway through the night until the wee hours of the morning. I manage to haul myself out of bed at 7:30, when I didn't go to sleep until nearly 3, shower, dress, (changed my outfit three times, then went back to the first one I put on, jeans, cons and my lucky Tori Amos t-shirt that I have worn to every procedure Sarah has ever had) get Sarah up, dressed and the car loaded. By 9:15 we were on our way. Cutting it a little close, but registration is never on time at the hospital, anyway.

Sarah was NPO, which is an acronym for some latin phrase meaning "Don't feed this kid because we're going to drug her and we don't want food getting in the way". So I didn't feed her breakfast, and I didn't eat myself, because as a mother, I just can't. Even when food is available and allowed, I feed my daughter first. I serve her plate, then I serve myself. I don't eat unless and until she does, which means that on procedure days when she is NPO, I don't eat until after procedure because she can't eat until then. Save that little nugget of wisdom for later.

We get to the hospital in record time, because there's no traffic! Yes! Getting off to an auspicious start! I'm feeling better about this. Sarah seems to be in good spirits, which I have managed to get her into while I am driving, despite a minor setback with her complete emotional breakdown because Daddy couldn't get the day off to come with. That man works way too hard and doesn't get paid enough. So, I manage to work my way past the "pissed off" because I do not need her in this frame of mind when she is about to go in for surgery, and manage to console my daughter with soothing words, and distractions, and  promises of all that is to come (Disneyland with no broviac! Real baths where she'll get to play until her fingers prune because I won't have to worry about her Press-n-Seal coming off and getting her dressing wet! A surprise waiting for her when she comes out of surgery, because I always go to the gift shop and buy her a new friend whenever she goes in for a procedure!). This gets her smiling, and just for good measure, I throw on her Rapunzel CD, because while my iPod keeps me awake and helps to get my head in the game, I think she needs her music more than I do at this point. Works like a charm, especially when I sing along. She is distracted and happy, talking and laughing, and even declares that it is time to make chicken noises when I hit the apex of the turn on the freeway off ramp. This is always the designated spot to make chicken noises, I am not exactly certain as to why, but who am I to argue with a toddler's logic? If Miss Bossy Boots declares that it's time to make chicken noises, then it just is. 

I drive around to the front of the hospital, the promise of convenient free valet parking dangling before me. I think I literally heard a record screech to a halt in my head when I see the front driveway full of cars, and the valets standing around talking. I wait, figuring maybe one or more of them will make a move soon to get these cars to the parking structure, but no, they continue on with their conversation and I am now blocking traffic with 10:00 breathing down my neck, so with a mental curse, I drive around the block to the parking structure and park the damn car myself,. I sit Sarah in her stroller, torture the Graco further by weighing it down with way too much crap, and walk the block and half around the building to the front of the hospital, where the driveway is still full of cars and the valets are still chatting amiably. Whatever, I've done it a million other times, what's one more?

 I get into the lobby and there is only one person ahead of me. Okay, good. we're only slightly tardy thanks to the chatty valets, and we can still get this done. I let them know we're here, they make me a pass, (because semi-permanent hospital passes are another new improvement the hospital has made three years too late) and ask me to wait. Sigh.


Luckily, I barely have time to log in to Facebook when our name is called. We register, which goes by quickly because the guy already knows us, so I get my own jovial chat while he clicks off the questions in the computer with record speed. We are walked up to our room, told immediately that we will be getting a roommate. Double sigh. Rarely do we get a roommate we actually like, and this room is the size of a shoebox for one patient, let alone two. The nurse is one we've had before, and she is extremely compassionate and just plain damn good at her job, so she informs me right away that she has no idea what time they are going to get her in, but she understands that she hasn't eaten so she will find out right away. I take her to the playroom while we're waiting to hear, where she meets a little friend, Gracianne. Gracianne does not have cancer, (sometimes they put patients with other blood disorders or autoimmune diseases on the cancer floor), so she has the most gorgeous blond curls you have ever seen in your life, and she gave Miss Boots a run for her money in the sass department. Needless to say, they were instant friends.

Bella (in back) and Gracianne. Aren't they the cutest?

We went back to the room when the playroom closed, and met our new roommate, Bella. Bella is 8, and her brother Liam is younger, although I'm not sure how old exactly. Sarah commandeered Liam into playing with her, which he happily did because he thought she was a boy. The Lalaloopsies didn't tip him off, apparently, but nor did they deter him when his mother informed him that she was, indeed, a girl. They played Candyland, then played "mailman" with the cards from Candyland when they got bored, which consisted of them "delivering" the cards back and forth, and then when they got bored with that, Bella and Sarah starting "delivering" the "mail" on top of Liam's head, which he laughed off good-naturedly. More new friends!

Sarah "delivering" "mail" on Liam's head!

The nurse informs me that surgery can't take her in until five, and we are both starving, but she is so distracted with her new friends that she doesn't seem to notice or care that she hasn't eaten all day. Sarah looks sort of mournful when they bring in Bella's lunch, but I explain that we will eat as soon as she is out of procedure, and she doesn't complain. My poor baby should not be used to this, but she is. The nurse warns me that transport has a habit of arriving early, so I promise to have Sarah ready by four, costing her another visit to the playroom with Bella and Liam, but surprisingly, she doesn't throw a fit. I have her ready and in her hospital gown by 3:30, and damned if transport doesn't show up at 4:00 on the nose! We head down there, the nurse piles a ridiculous (but necessary) amount of blankets on top of both of us to combat the arctic temperature in the room, and we make light chit chat as we wait for the doctor to arrive. The anesthesiologist comes in, introduces himself, and with ninja-like precision, gives Sarah the Versed without either of us noticing. I realize in that moment that God has granted us a small miracle already. That is the first time ever, EVER! that Sarah was sedated and didn't scream her head off through the entire thing. She was alert and awake enough to tell me that they had already given her the medication, but I didn't believe her because she seemed relaxed, but not out of it. She was still herself, she was still my baby, there was still light in her eyes. That is the hardest part for me on procedure days, watching the light go out in her eyes.

She goes in by herself, no favorite nurse, no favorite child life specialist by her side, my brave girl, I kiss her goodbye, and she smiles at me. I settle into one of the sublimely comfortable purple leather recliners, prop my feet up on the ottoman, put on my iPod (I almost said Walkman, this is how tired I am! I think it's 1989!) with noise cancelling ear buds, and like it knows that I need this, the iPod pulls all of my favorites up on the random shuffle, everything I need to hear in that moment. I try to read on the Nook, but my brain is far too tired to concentrate, so I play Bejeweled 2 and try not to fall asleep in the ridiculously comfortable supple purple leather chair. Where do I get one of these, seriously? It must cost thousands, this chair, but I don't care, I so want one for my next birthday!

I am halfway between awake and asleep, losing at Bejeweled 2 because I am too exhausted to even match up three like stones correctly, apparently, and the surgeon comes back within ten minutes telling me the procedure is done, and it went beautifully. My phone is buzzing with text messages and email notifications, and I manage to answer one phone call from my husband before my phone dies on me. Thank God for my Nook and free hospital wi-fi, because I was able to update my facebook status to let everyone know so no one would worry. The doctor said they would come get me to go back to recovery within fifteen minutes. Fifteen minutes turn into thirty, and while I am immensely enjoying the comfort of this chair and my music and my e-reader, I start to worry that maybe I misunderstood, maybe I am so tired that I did not understand what the doctor said, maybe I was supposed to follow him out, and I didn't. What if they take her up to the room without me, and she's calling for me and I'm not there? What if they're looking for me, and I'm sitting in this chair and they can't get a hold of me because my cell phone is dead?

I am now sufficiently worried enough to reluctantly hoist my exhausted ass out of the wonderful purple chair and go inquire. The male nurse calls back to the recovery room for me, informs me that they have only just removed her breathing tube, and that he will walk me back there. In other words, I worried for nothing and I could have enjoyed another few moments of bliss in the purple chair. See what trouble my mind can cause?

They take me back, and she is still asleep. She sleeps for a good twenty minutes. She awakens, rubs her eyes, smiles at me like it's any other morning, then remembers where she is and peeks underneath her purple hospital gown to look for her broviac, which is no longer there. In it's place is a small square piece of Steri-strip, with a small amount of blood on it. She is free.

She gains her bearings a bit more, asks me if she can play a game on "Nookie" as she calls it, because everything has a name, and it usually has an "ie" at the end. My phone is Phonie, her dvd player is DVD Playerie, there is Stevie the TV, and Nookie. I hand it over, showing her a new free children's book I downloaded for her while I was basking in the purple chair. She was sufficiently entertained and happy. The nurse asked her directly if she had any "owies", which Sarah understands to be any pain, big or small, while the nurses mainly take it to mean big hurts. Sarah has been trained to give an honest yet respectful response when asked a direct question, so she told the nurse that yes, her chest hurt where they took the broviac out. She was not crying or screaming. She stated this matter-of-factly, then went back to playing with the Nook. The nurse gave her a shot of morphine. Sarah was more relaxed afterward, but continued to play a counting game on the Nook, and with precision was able to do it correctly.

We get back to the room, where we are given a warm welcome by our new friends, and informed by the nurse that there are no orders for when to send us home, and that there is now a hold-up because she felt enough pain to be given morphine. I explained to the nurse that I didn't think it was enough to keep us here, and she said that I should reiterate that to the night nurse because it was change of shift, and the nurse would take my word for it, being the parent. I agreed, and looked at the clock, fully intending to order Sarah some food, realizing that we had arrived ten minutes too late to order anything from downstairs,and my daughter had now gone a full 24 hours without eating or drinking anything. She starts to cry, my heart breaks. I try to console her, our new friends offer a variety of food, which she refuses. I manage to placate her with some fruit loops and chocolate milk from the kitchen, and within minutes she has wolfed it down (poor baby!) and is happily playing stuffed animals with Bella. Now, Bella is highly imaginative, witty, and HILARIOUS, not to mention that right around then she has a major case of the sillies, so the girls had a wonderful time playing, and I must say, it was just as enjoyable for us moms to watch. So much so, that even after we were discharged, Sarah wanted to stay and play!

Sarah managed to stop crying for a second and smile (sort of) for the camera! We love our new friend, Bella! :)

Okay, here comes the part where I'm a bad mom...before I get to the part where I'm an even worse mom...

We had both gone over 24 hours at this point without solid food or liquids. We were starving, literally. So, even though Sarah technically can't have fast food for another nine days, I broke down and we had Jack in the Box. Let me tell you, the look on Sarah's face was priceless, and I must say, I never thought that I would miss fast food as much as I did. Those were the best curly fries, everrrrrrr......Ten days too early, but maybe the fact that they were forbidden fries made them better, I don't know...

Okay, so I get home, fed, satiated, exhausted, but happy...it has been a long, but overall a good day. My body clock is still off, so even though I am running on fumes, I drift off somewhere around 2 into a dreamless slumber...I swear it felt like I had closed my eyes for mere seconds, before I hear a loud thud, and my baby screaming for me, but not in the spoiled brat way that she knows is annoying and therefore will get me to come in the room faster. This was for real, yo. She was seriously in pain. I get into the room, and she's lying flat on her belly, can't get up. I figure she's still half asleep, so I pick her up, check her over, she seems fine outwardly, and I am able to calm her down and soothe her back to sleep, so I think she's fine. Three hours later, when she wakes up (and I have been writing this blog for three hours), I go to lift her up and she howls in pain. Not good. She kicks up a fuss, cries inconsolably with my mom while I'm on the phone with the doctor because she doesn't want to go back to the hospital. I throw on clothes, shoes, put fresh pj's on Sarah, load the bags I haven't had a chance to unpack from last night, just in case we have to stay, and we are off. She is chatting jovially with me the whole way, I am a nervous wreck, trying not to cry and frighten her. Something is broken, I know it. I can feel it.

We get there, and they usher us in in record time, the ER is surprisingly empty. We see a doctor within an hour, get x-rayed within two hours, get results within another hour, discharged an hour after that.  She has a hairline fracture on her right collarbone, has to wear a sling for two to three weeks, or until the ortho consult tells us she can stop wearing it.

Sarah, looking none too happy with her new sling...

She doesn't really like it, and I had to pin it shut so she would keep her arm inside, so I am looking into ways to make this more palatable for her. I made a pink sling for her dollie, the one I made to look like a bald Lalaloopsy doll that she named Sarah and drags with her everywhere. I clipped one of her bows to her sling. I am trying to figure out ways to decorate this sling, maybe make her a prettier one if I can figure it out. She is already getting so self-conscious about everything she has to go through; at four and a half, her body image sucks, and she doesn't like herself. She actually told me this morning that she was sorry, that she "always does this", referring to the fact that she had a hairline fracture in her hip at 20 months, which was how we diagnosed her leukemia in the first place. She thinks this is her fault, and no matter how many times I tell her it isn't, I'm never quite convinced that she believes me.

So here I am, two days with minimal sleep, minimal food, and all I want is a shower and big fat glass of wine. I have had a tension headache all day, and my neck and shoulders are throbbing they are so tense. Where does that leave us? Glad that it's over and hoping for a better and far less eventful day tomorrow.With this child, it probably won't happen because every day is an adventure, but a girl can dream, can't she? :)

Day 67....

I know I've gone radio silent for awhile, but the truth of the matter is, things have been a little rough around here, emotionally. Sarah and I have been squaring off a lot lately, who knew a four year old would be a worthy adversary in a battle of wits?

On top of that, while Sarah's health seems to be taking a turn for the better (despite my daily struggle to get her to eat anything besides string cheese and cereal), my world otherwise seems to be falling apart at the seams, and I am not taking it well. My job of ten years has let me go finally because I have only accepted one job per school year for the past three years, and I think this past school year I didn't work at all because of Sarah's relapse. I called, and they told me to call them  back when I was ready to commit to three days a week, but I have been taken off the sub list. This has been a hard blow for me. I understand that I really have no choice, if it comes down to my job or my kid, my kid wins, every time. Still, it saddens me to say goodbye to a career that I worked my ass for, and I have no guarantee that I will be able to go back when the time comes. Six years of school, plus ten years of service, and it's all gone. Eff you, Cancer.

Sarah is growing hair everywhere because of the Cyclosporine she takes to combat the graft vs. host diesase, and she looks like a little baby werewolf! I am hoping that it goes away once she's off of this stuff for good. She has on her Belle dress and wig today, and it made me sad as I putt the wig on her, brown curls spilling down her back, and thinking that this is how long her hair would be if it had been able to grow normally. What I wouldn't give to step into the alternate reality of a normal life.

Sarah is chomping at the bit to go outside, to eat strawberries, to go to McDonald's, to be able to swim in the pool or play in the yard, and it is killing the both of us. At least I can understand why I have to say no. She is frustrated and so am I,  because as a mother, your natural inclination is to give your children what they need, especially if their requests are as simple as these. I understand it, rationally. But my heart aches for my little girl, and the little girl she should get to be.

I know, this blog is all inspirational speeches and gusto, and I'm not going to tell you it's bullshit, because if I wrote it, then I believed in it, it's how I was feeling at the time. But today, and for the past few weeks, I am lamenting for the life she should get to have, the life she deserves that I can't give her, at least not right now. I know it's not forever, that things will get better, because they have to. But for right now, in this moment, I'm sad. And I know that makes everyone sad and uncomfortable, too, but it's the truth. I work so hard to hold it together most of the time, that when I do start to come apart, even a little, only a little, people don't know what to do with me. But it's the reality of the situation. If I were happy and upbeat and all "Let's kick Cancer's Ass" all the time, I would be in serious denial. I am a realist. And most of the time, I am all ready to kick Cancer in the ass for all it has taken from all of us, but there are some days where it catches up, and I lament the life we could have had, the life we should have had.

I don't intend to dwell on it, nor do I intend to shove it  under the rug. That does no one any good. I intend to feel it and move on, even if I have to do so on my own.

As an English major and and avid reader, I like to think that I am well-read, but one of my favorite quotes of all time is from a Tori Amos song. "I've found the secret to life/I'm okay when everything is not okay." And I honestly believe that she's onto something. That this is truly the key. It's not about pretending that everything is okay when it's not. It's about pushing forward. Not necessarily striving for happiness, just striving to be okay, and finding happiness along the way, wherever we can.

If my world is falling apart around me, everything I  knew to be true was an illusion, well, then it's simply a chance to start anew, to rebuild, to become something else, however painful that may be.

Day 55

Okay, so here we are, Day 55, and things are starting to get a little harder. Sarah has reinstated herself a new bedtime of midnight, and refuses to go to bed before then, and just when I had her back on schedule! It is also harder to re-instate her potty training this time around for some reason, and she has gotten waaaaay too comfortable just going right in the pull-up, so I have decided to just bite the bullet and put "big girl panties" on her while we're at home. More laundry for me, but something has to be done. In the meantime, I am a little overwhelmed with all of the excess cleaning and short-order cooking that has to be done, and Sarah just hasn't been herself lately so the tantrums are becoming increasingly frequent and even violent. I'm not exactly sure why, but my sweet little girl has taken to biting, hitting, and pinching me whenever I am within reach, whether she is upset at me or not. Playground rules would dictate that I hit her back, but being a mature adult and liking the fact that I'm not in jail, I can't do that. Besides, one of us has to have a mentality above four years old, and I'm guessing it's not going to be her, at least for another year. So, I guess that leaves me. The problem is, I have never encountered a child so stubborn in my life! I have read child-rearing books that tell me to either do what I'm already doing but that is not working, or tell me to do things that I can't do right now due to her illness, like let her run off her excess energy outside.

I think that may be a part of the problem. The one child-rearing book that makes a modicum of sense says that one needs to understand that it's rough being a toddler. Imagine being wrong all day long. You can't do anything right, even when you try. You're constantly being told no. That's pretty damn frustrating. Okay, point taken. The tantrums make a little more sense now from a toddler's perspective. Now, imagine that on top of being your average, run-of-the-mill toddler, you're a toddler with cancer. Not only are you doing everything wrong all day long, but you feel like crap on top of that. All day long, and you don't understand why. And as many times as the average toddler is being told no, you're being told no twice as much, for things that you know all of the other toddlers get to do! No, you can't go outside. No, we can't go to Disneyland right now, even though we have passes, and extra cash. No, you can't play with that kid, he's coughing. No, you can't take your mask off, because there might be pathogens on the freaking wind. No, you can't freaking eat, you have a procedure! WTF? And I expect my very intelligent four year old to just accept this. And I wonder what the hell her problem is. What is wrong with me?

Not to mention the fact that it's a hard transition from hospital to home, especially emotionally. Not judging the parents who have no choice, but I don't ever leave Sarah in the hospital. If I do have to leave for whatever reason, either my mom or my husband is there with her, I don't ever leave her alone. I am there with her twenty-four hours a day, and I don't ever leave her side. The bathroom is five steps from her bed, and I don't get to use it unless she's asleep, most days. My sole purpose for being in that hospital is to attend to her every need. Mommy doesn't have to clean, or cook, or do laundry. The room is small, and Sarah's toys are copious but limited, so clean-up is a lot less time consuming. Then we get to come home, and I am still alone all day with her, but there is no maid to clean every day, and it needs to be done every day, not just once a week. There is no "downstairs" to call when she wants to eat, Momma has to make it fresh, set it in front of her, clean and disinfect the kitchen immediately afterward. Floors need to be swept and mopped, vacuumed every day. Laundry is done as needed, but it piles up and being the only one home all day, I need to do that, too. And that's on the days that we stay home. Appointment days are even more hectic, because chores get put off until we get home. I have a lot more responsibilities and a lot less time to just sit and play with her. I honestly believe she is acting out.

So, I made a schedule, factoring in "Mommy and Me activities, as well as "free play" several times a day so that I have some time to get things done. So far, it's been two days, and I have stuck to maybe 50% of the schedule. And she has thrown 50% less tantrums. I am hoping that once we both fall more into a routine things will settle down some more. I am exhausted, and I am anxious to get this house and this life into some sort of order so that it can be less stressful for all of us. Who is this person I've become? I was never a "structure and schedules" kind of girl. I was a "see where the wind takes you" kind of girl. But I guess when the wind can kill your kid, that all kind of goes out the window.

Day 50...

Okay, so yes, it's been nearly two weeks since we were released from the hospital, and I have been MIA during that time. With good reason. Since the day we got home, it has been non-stop trying to put the house back in order, trying to keep up with the new responsibilities of Sarah's post-BMT cares, trying to complete Sarah's brand new Lalaloopsy room as she makes a constant mess behind me. I have been going to bed by midnight every night (which those of you who actually know me, know is unheard of where I am concerned, even when I had a day job) with my ankles swollen to the size of grapefruits and every muscle sore. After nearly two weeks of working on the house every day around Sarah's appointments, and fighting with her to clean up her own mess, the house is almost (almost!) back in order, and I think by tomorrow, her Lalaloopsy room will be worthy enough to photograph and post on facebook or in a blog. But not yet. It's pretty, and Sarah loves it, but it's not complete.

Tomorrow, I will do what I can, but I am going to try really hard not to tire myself out too badly, because my husband and I are supposed to go out to celebrate our 6th anniversary tomorrow night. Nothing fancy, just a drive-in movie (or possibly an actual movie, because I want to see The Hunger Games ever so badly) and a picnic, the real celebration is that we finally have some time together, to remember why we got married six years ago.

Today, we had labs and a doctor visit, then we went to visit Julian, but they were sleeping, so we visited Nurse Kara instead. She was happy to see Sarah, of course. It was good that they got to see each other, and that Sarah is doing well.

Today is Day 50, and Sarah is doing amazingly well. No vomiting, she is eating fairly well, and I am going against everything I know as a mother and I'm actually trying to make my daughter fat, because for the first three days she ate nothing but bacon and eggs three meals a day, and she dropped weight. So yeah, my daughter basically put herself on Atkins for three days, and the doctor said if we kept that up, she'd buy herself a ticket back to the OICU and an NG tube. So, I've been tempting her with carbs; we made mini corn muffins with bacon pieces mixed in; I made my special pancakes, french toast, and getting desperate because she went from 15.4 kilos Wednesday to 15.3 kilos today, I offered her potato tacos, which she happily accepted.

Now, for those of you not familiar with this Mexican delicacy, tacos de papa, or "potato tacos", are just that.  Tacos made out of potatoes instead of meat. Each family seems to have their own way to make these, but I dice and fry the potatoes, then put them into the tortillas and fry them as you normally would a regular hard-shell taco. Condiments are also a matter of taste. I eat mine with cheddar cheese and Tabasco sauce. Mike eats his with cheddar cheese and Tapatio. Mariah, cheddar cheese, Tapatio and ketchup (because she puts Tapatio and ketchup on everything), and Michael ate his with mustard, don't ask me why. The youngest two seem to be somewhat normal, and they eat theirs with just the cheese (although Sarah eats hers upside-down!). Disgustingly fattening, but so delicious! The kids love them, and they have sort of become a staple around here, although I haven't made them in a long time, since we've been in the hospital (duh) and Mariah can't eat them with her braces.

Like I said, I was getting desperate to keep this child fed, and she was denying everything I offered her because this week she has abandoned the bacon and eggs for her new food of choice, Popsicles. I offered her the potato tacos, and she accepted with enthusiasm, thank God. She ate two of them.

THEN, there was the hummus fiasco. Miss Boots got it into her head that she would like for me to make her favorite red pepper hummus at home, not buy it from the store. So I looked up a recipe online, and since it seemed easy enough (you dump everything in a blender, and you're done) and my mom was going to the store anyway, I agreed to make it.

I roasted the red bell pepper myself, gutted it, sliced it, and threw that in. Chickpeas, lemon juice, garlic, and this recipe called for cumin. Here's where things went awry. I dumped the cumin in, not thinking to look at it first. I blended all the ingredients and we created a gorgeous red-pepper hummus at the perfect temperature and consistency. It even tasted good. Until Sarah shouts "BUG!" at the top of her lungs, because she thinks that bugs constitute emergencies around here. I honestly think some times that if the house were on fire, she would tell me calmly and rationally, and wait until I was off the phone, but a bug is an emergency of epic proportions. The bug she was referring to was a tiny little... I don't know, some sort of teeny creepy crawly thing that looked like a seed of some sort that was crawling across the top of the cumin tin. I opened the tin and found a whole bunch of them in there. Obviously, I threw the tin out, then realized, that I had just dumped a whole bunch of cumin into the mixture of our perfect home-made hummus and there were God knows how many ground-up creepy crawlies in there! Luckily, my mom bought extra stuff in case Miss Boots wanted more, but only one red bell pepper, so there was enough stuff to make another batch of plain hummus. We made that, Sarah ate two bites, and the rest is residing in all it's probable deliciousness at the bottom of a trash bag.

She picked up her toys on her own, bugged me to get off the computer so we could pick out her pajamas, and got into bed after her bath with no kicking, screaming, biting, or fooling around. She has been blissfully asleep for the past hour.

Today is Day 50. We are halfway there, halfway to Day 100, which is when we are considered more or less "out of the woods" although we will always have to be on the lookout for graft-vs.-host and relapse. We are halfway there, and it passed so quickly! Now that things are more or less back in order, or as much as they can be with Miss Boots, I will try to write more frequently to keep you all more updated on how she is re-adjusting to life at home. For now, let's just say that we are both so happy to be home, even me, despite the lack of maid and room service! :)

Day 39...home? Not so much....

Okay, so we woke up this morning, thinking we were going to go home. Well, Sarah did. I was hoping and praying we were going to get to go home, because the doctor had said that if she ate well throughout the weekend. So Miss Boots had her heart set on going home today, and I warned her that we might not get to, but she got upset anyway. REALLY upset. Like cried for two hours, started yelling at me and her favorite day nurse, upset. My daughter is nothing if not STUBBORN, and she refused to be consoled no matter what we did. Finally, finally, Nurse Kara and I convinced her to eat, and she ate a decent enough amount (I hope) to please the doctor. After much pleading, cajoling, blatant force feeding and out and out bribery (one YouTube video for every bite), I got her to eat one french toast stick, two pieces of bacon, half a cup of yogurt, and half a box of apple juice.

When the doctor came in to speak with me earlier, I explained to him that she has been eating better (albeit not healthier) and that I don't think the NG tube is necessary just yet, and he says he is willing to take a chance and send her home tomorrow if she can eat, drink and take her medicine well today. This was not acceptable to Miss Bossy Boots. She wanted to go home today. Not tomorrow, TODAY.

She is going to do physical therapy right now, and she is helping Kara "hep-lock" her line so that she can be completely free of the machine (this means put Heparin in her line so that they can unhook her from the machine. Heparin is a blood thinner that keeps blood clots from forming in the line). Miss Boots is now on board and hoping to be able to go home today. We shall see...

Ten ways that I am different...

I recently got tagged in a blog from a very dear friend of mine to write a list of ten ways that I am different, a list of ten different things that set me apart from everyone else. I am a writer by nature, always have been, and I am very introspective and know myself well, so this challenge is right up my alley, although it has been awhile since I have attempted anything so literary and thoughtful. So, my interest piqued, I have accepted the challenge and now I have to filter through my sleep-deprived mind for ten things that make me utterly unique, ten things that are purely me. So here we go:

Ten Ways that I am different:

1. I am not a dog person.

I 'm not exactly sure that this is worthy of number one, exactly, but it was the first thing that came to mind. Most people seem to love dogs, and I don't know, perhaps it was the fact that I was bitten twice in my childhood by very large, very mean dogs, but I am just not a dog person. Small dogs tend to be yappy, needy and annoying (not all of them, but most of them) and large dogs smell and leave slobber and hair everywhere. Yuck. I will tolerate dogs alright, the smarter the better; we have even owned a few, and my mother owns one right now, but I have little patience for dogs. I have little patience for stupidity in general, and most dogs will stare at your finger when you point to something. Let the hate mail commence.

2. I love seafood.

Sure, lots of people love seafood, but I ridiculously love seafood. Shellfish especially. You have to respect a creature that makes you work for your meal, even in death.

3. I clean when I'm upset. Or sing. Or both.

I am not a neat freak by anyone's standards, so if you catch me cleaning something unnecessary, I'm probably pissed about something. I figure it's a good way to burn off energy and get things done at the same time. I have sung my whole life, and music is a big part of my life, but it is the most necessary when I'm upset.

4. I love independent films

Don't get me wrong, I love a good mainstream flick, too. But Jackass is not fine cinema. I love independent films because they unfold like novels and they give a very clear and in-depth look at the characters themselves, who they are as people in the world. That seems to be lacking in mainstream cinema for some reason. Call me crazy, but since your brain is more active when you're asleep than when you're watching something on screen, I respect a movie that makes you think.

5. I love TV.

I know, I know. TV is bad for you, and given what I just said about your brain being more active when you're asleep, I am a total hypocrite right now, but I love TV! Our big screen has a name, Stevie the TV. There is such a grand scope of things to watch, and it both holds up a mirror to reality and provides an escape from it at the same time. I think that as long as you  have a balance, just like everything else, there's nothing wrong with it. There are times where I enjoy the quiet as well, times where I just want silence, but for the most part, there is a television going in our house twenty-four hours a day.

6. I love trashy romance novels

Like literary candy, there is something to be said for a good, juicy novel that is all fluff and no substance. I do respect a good, cerebral literary work of genius, but sometimes, it's just as good and as necessary not to think. The predictable plot-lines and arbitrary characters are almost laughable at times, and it kind of makes me feel superior knowing that I could probably write a better novel. In my sleep. When my brain is more active than when I'm watching TV.

7. I love pretty clothes, but I hate dressing up.

I am an old-fashioned kind of girl. I love pretty clothes and shoes, I love the elegance and style and grace that the right outfit can lend to a woman. On most days, however, unless someone died, (since there is really no other occasion that would warrant me to dress up anymore), you will catch me in jeans, a t-shirt, a hoodie and Converse. And that's if we ran into each other on the street. At home, sweats and pj's. Given my current lifestyle, I'm sure it's no surprise to anyone that I prefer comfort in an outfit over style. But I've kind of always been this way. I like to look as cute as the next girl but much of my adult life has been centered around children, and heels and silk are not exactly conducive to running around after kids, especially when you're a cancer mom running back and forth between clinic and hospital.

8. My chips have to match my sandwich

I know, this is weird, and I am rarely this anal about anything, but there it is. It's not like I won't eat it if the chips don't match the sandwich, I just have a preference is all. For cold cut sandwiches, I prefer Lay's, plain if possible, but flavored will work. For turkey sandwiches I prefer a cheese type of chip, although the Lay's will work for that as well, and Doritos are reserved for pb&j.

9. For a Gemini, I am surprisingly steadfast

Geminis are known for their fluid nature, for being fickle, even. While I can see some of this in myself, and I am definitely open to change and trying new things, I am surprisingly predictable and steadfast. I always order the same thing at every restaurant. I read the same books over and over again. I pretty much listen to the same type of music that I have since high school, although my music taste is broad and eclectic. I am not a music snob. Music is music, non-music (ahem, death metal, electronica, "house") is just that. Annoying noise. No more musical than a car alarm going off. I cringe when my mother and husband want to rearrange the furniture every month, and I swear, one day, I am bolting everything to the floor. I like knowing where things are. I like knowing that in a world that is crazy and chaotic and ever-changing that some things are always the same, and never change. It is comforting to me.

10. I love food.

I think this may be one of the most defining things about me, and unless you've known me since birth, not too many people know this. It is definitely a defining thing about being a Gonzalez, at least our branch of the Gonzalez family. My father has six children living, and we are all the same in at least two things, which I am positive we get from him. We are all obsessive about our hair, and we all LOVE food. My father, on a day off, spends all day cooking, and force feeding everyone within a ten mile radius. And he's good at it. When Sarah won't eat, I take her to Apa's, and he gets her to eat all day long. Before bed, since we were small, we always ate a pan dulce and a glass of milk, or some other such delicacy. Now I can't sleep without a snack. If I'm fat, it's his fault! :)

Again, I am not a snob when it comes to food. I love vegetables and healthy food as much as I love it's disgustingly unhealthy counterparts. It either tastes good, or it doesn't, and this is my one criterion for what I eat. I don't worry about my weight. The doctor says that I am healthy, and the food is too good to give up. Have you seen what most skinny girls eat, at least the ones who have to work to be skinny? No, thank you. Pass the cheesecake, please. I ate strawberries dipped in chocolate pudding as a snack last night. You know you're jealous.

Okay, so that's it. I am almost positive that half of these are crap, and given more thought and a lot more sleep, I am sure that I could come up with some that are way better. We may have to revisit this later. But for now, I am proud of myself for completing the challenge, and I will keep thinking to come up with some better things that define me. If you have had more sleep and can think better than I can, and you've known me longer than 30 seconds (that should be number 11. I can't stand when people run their mouths when they have no idea what they're talking about), feel free to suggest some things I may have left out.