Sunday, September 23, 2012

Decisions, decisions...

So I know that I have been MIA these last few days, and for all four of you who actually read this, I apologize. These last few days have been the stuff of nightmares, the kind of day you imagine when a doctor informs you that your child indeed does have cancer. We have been faced with some very difficult decisions, decisions no parent wants to or should ever have to make.

I can't even tell you what day that was now that the doctor gave us the disturbing news that there were 50% blasts in Sarah's bone marrow from her biopsy, which means that her blood is half full of leukemic cells, and this treatment was not successful. It also means that we are running out of options, and the time has come, the walrus said, to speak of cabbages and kings. It's time to decide whether we want to continue with treatment, or simply pack up and go home, running out the clock until Sarah dies. It could be weeks, or months, but slow and eventually painful. Or we can continue, but we're all sort of grasping at straws here, because there is no roadmap for where we have found ourselves.

That is the scariest part of all of this. For the past three years, there has always been a protocol, a road map, a plan for what we could do to treat her. There is no road map anymore. We are on our own, with the doctors and nurses, of course, but there is no longer a set course of action. We are down to trial and error, experimental treatments. And there is no other option.

After two hours with the counselor, and the social worker who joined us later in the Hope Room (which is really a broom closet with a table and chairs, a small desk with a computer that works sometimes, some pamphlets on a wall-mounted rack with information about various cancers, and a trash can that someone made use of as an emergency potty. Yeah, the poor counselor sat next to it as I cried for hours on end, God bless her, until she really couldn't stand it anymore! Now, if that's not love and quality care, I don't know what is!), discussion with my mother and more discussion with Mike, we decided that we all feel she has one more round left in her. I even asked Sarah herself, and she said she wants to keep going.

I am hoping that they have a better parent lounge set up in the new tower, cuz the Hope Closet is just sad. Hopefully something quiet and peaceful, with low lighting and soft colors and some of those awesome purple lounge chairs they have in the SSU. At least, that's how I would design it. But I digress.

During those two hours, I deliberated, not because I can even wrap my head around losing my daughter, but because I am afraid of pushing my own agenda onto her. I don't want to make her suffer unnecessarily just because I'm not ready to let her go, but at the same time, I don't want to give up on her before it's time, either. This decision is too big, and I feel like I am not wise enough to make it. This feels too much like playing God to me. Who am I to decide if she lives or dies? I was unworthy of such a glorious gift as this little girl in the first place, who am I to decide if I get to keep it?

After the counselor couldn't stand the pee smell anymore (gotta love that she sat there for that long!), we all had a good laugh, cleansing, healing, and then I felt better. I know I could probably find a more poetic way to phrase that, but I did. I came back to the room to find my daughter, laughing, playing with her toys, inviting me to play with her, and I knew with such certainty that we had to keep fighting. She is still so full of life. She is still here. She hasn't given up yet, how can I? If I took her home now, I would feel like I killed her, and if she dies, I can't live with that. I need to feel like I did everything I possibly could, like I did right by my daughter at every turn. I CANNOT feel guilty, about anything, because I won't be able to survive it.

Since we have decided to proceed, the doctor said he wants to use this drug called Mylotarg, which fizzled out of use a few years ago when they saw that it was doing more harm than good, but new research has apparently found that it could do some good for relapse patients, as it targets cancer cells specifically and leaves the good cells alone, meaning less side effects. Since it's making a comeback, the doc thinks he might be able to get his hands on some, and if he can, they will give her the Mylotarg with more donor cells inpatient, and if she does well with that, they will be able to treat her with Mylotarg once or twice a month in the OPI, so we'll be able to be home, do things, make use of our Disney passes, etc.

This drug is experimental, and it's scary that we don't know more, but this is where the path has led us. We are flying blind. Right now, I am praying like mad that I get to keep my daughter, I am enjoying every moment, I hug and kiss her even more than I did before, if that's possible. I am loosening the reigns a little, spoiling her, because why the hell not? I am half tempted to give her the toys we have put away for Christmas, because what if she doesn't make it that far? A closet full of toys she could have enjoyed would be more sadness than I could bear.

An example of my new found recklessness: Sarah received a $200 gift card to Target for participating in a study for this anti-fungal drug. I immediately went onto and bought $250 worth of toys. Just toys. Sure, I could have used it for boring but necessary things, like pull-ups, wipes, clothes, even. That $200 could have been a help. But I figure, she's the one that had to take the medicine. And it was a hassle. She was even allergic to it, and she had to go through that, too. She earned that $200, and she deserved to spend it on whatever she wanted to. My sweet girl wanted me to save it all for Christmas! She even got upset when I told her there was no point since she picked the stuff out, and that she could have it all now! lol

I feel rejuvenated with my new focus. I am determined to enjoy every day as if it were the last, while still maintaining some discipline, just in case this works and we all have to deal with her at 13, when most kids start to lose their minds. Yes, I know there are children less fortunate that don't have half of what she has. But this little girl has suffered through so much shit with a smile, I am going to do whatever I can to make her happy, whatever I can do to make her want to STAY HERE, I will do. Rule #1, don't judge the cancer mom!

And I must be doing something right. My daughter is polite and well-spoken. She is sweet and empathetic. She worries for other people. She would rather delay her own gratification in receiving a shitload of toys for no reason, so that I won't have to worry about money at Christmas time, which is also birthday time. She would rather forgo Heaven if it means she gets to stay here with me. That is a compliment of the highest order, as far as mothers go. She would rather be tortured, poked and prodded, she would rather suffer through this hell with me than be in Heaven without me. My cup runneth over.

So we fight. We enjoy every day, we take on whatever comes. But I will not let her go without a fight, and she won't let go without a fight. I can't get this child to stay in the Time Out corner, do you really think Cancer can take her before she's ready to go? If she's going to die, she's going to die with her sparkly pink boots on. And I will be right by her side, every step of the way.

Sunday, September 16, 2012

Her poor little tummy!

Okay, so I'm gonna jump right in here, because I am too tired to finesse my way into this. I literally stayed up the whole night last night with Sarah, who would sleep for a half an hour at a time and then wake in a screaming fit of pain,screaming, "Owie! My poor little tummy!" She was like that all day yesterday, but it got worse in the night. The nurse was so distraught, she called the resident on call four times (I'm not kidding!). He took one look at her in the morning, scratched his chin and said he had to talk to Dr. Kirov. Dr. Kirov didn't have too many more answers, but he did have some solutions that were put into immediate effect. Abdominal x-ray and ultrasound, bone marrow aspirate and biopsy in the morning as scheduled. Blasts were up to 20% again. The doctor is avoiding my eyes again. The signs point to leukemia, and what she is going through is excruciating bone pain. My tears actually managed to break through my robot exterior today. I am starting to get angry.

Not at the doctors or the nurses or anyone else. I am angry at this monster who is trying to steal the only thing I have ever asked for, the only thing I have to show for my life. For the first time in three years, I want to curse and to hit things. What the fuck!

She's just a baby, and all she wants is to be normal. She wants to make use of her Disneyland pass without having to clear it with a doctor. She wants to play in the yard, jump in puddles, she wants to be a nurse when she grows up. She made me promise to stay with her forever. It isn't fair. She should be able to fucking sleep without the aid of heavy narcotics.

For the first time in three years, I am angry and I am scared. I have held on to hope so hard for all this time, that I never allowed myself to be afraid, truly afraid that I would have to move on in the world without my daughter. In four years, I have had to be away from her exactly twice. TWICE, in her entire life, I have had to spend a night away from my child. And I was chomping at the bit to be near my baby. How the fuck would I be able to get through an entire lifetime?

Everyone tells me to stay positive, to keep the faith, that she's not done here, that this is a bump in the road, another anecdote to add to her amazing history. But what if they're wrong? What if I'm wrong? I don't feel her slipping away from me, but what if I'm wrong? What if I am so closed off from my feelings in this survival mode that I can't feel her? For three years, I have held on to my faith. But I am truly starting to get scared.

For now, they have Sarah on a Dilaudid drip, which we discovered somewhere before shift change this morning works better than the Fentanyl which gave her only a little relief, so at least she can stay comfortable consistently until we can find out exactly what's wrong. It buys us more time here, of course, but as long as she gets to stay, I will live in this hospital for the rest of my life.

Before y'all get too worried that I've taken up permanent residence in the bell jar, I'm going to keep on keepin' on the way I always have. Cancer has taken everything but my child and rendered me utterly useless. There is nothing for me to do but to hope and to pray. I am trying to add things to Sarah's childhood bucket list, I am planning for Christmas (she wants to make gingerbread men. I have the task of figuring out how to make them pink). She wants a white kitten she can call Marie and bedeck with pink bows. People have beat the odds before. And if there is anyone likely to put on her pink sparkly boots and kick cancer's ass, it's my princess.

In the meantime, anyone have any ideas on how to make pink gingerbread men?

Wednesday, September 12, 2012


Today, I am thankful for small things...

Dr. Kirov came in earlier and said that Sarah still had 20% blasts in her peripheral blood (meaning there are some suspicious white cells hanging out in her blood). Could be nothing, just a result of the GCSF they are giving her to boost her white counts, or it could be an indication that this didn't work, and we have to try something else, with an even smaller chance of survival. The doctor started mumbling at that point in the conversation, avoiding my eyes, which tells me there is cause for concern because he loves this little girl. It scared me. My heart was immediately heavy, but he assured me he would look at the sample himself, and tell me what he saw. Apparently, this news was enough to push through my robotic armor and I have been fighting tears all morning.

Sarah, in much better spirits today, invited "all the nurses in town" and the doctors to a "popcorn party" in her room, and Dr. Kirov was the first to make a cameo, bringing with him the hopeful news that when he looked at the sample, he saw only one suspicious cell out of 20. He looked me in the eye, spoke with confidence when he said that based on what he saw, it was not enough to say for sure that the leukemia is back. We are back to waiting and seeing, but at least we can have hope again. The news is promising.

Sarah finished her popcorn, got Parmesan cheese EVERYWHERE, including all over her face and what's left of her hair, and decided she wanted to give me a big bear hug at that exact moment. I took her up on it, easily. "Promise me you'll stay with me forever," she said, as she buried her head in my chest. "I'll promise," I said, "If you promise that you'll stay with me forever." "I'll take that as a yes," she smiled, and gave me another hug, smearing Parmesan cheese all over my sweater. "You can't go til you're old and gray," I said. "I'll never be old and gray," she said, with a cheesy grin.

All I can do is bask in the promise of today, the promise of tomorrow. Try not to read too much into that statement, that she'll never be old and gray. Chalk it up to a child's innocence when being an adult seems WAY off into the future, being old seems like an impossibility. All I can do is be grateful for medical professionals who care enough to double check, who care enough to let themselves care about not only what happens to her, but how I feel about what is happening to her. I can be grateful for Sarah's little voice, for the cleverness of my bossy little girl (the other day, I told her she was not the boss of the world, and she placed her hand on her hip and said, "Who says?"). I can teach her to read and to write and pray that there will come a day when she can employ these skills in a useful way. Promise me you will be with me forever, she says. I promise, little girl. I promise.

My best four years...

So much has happened in the last few days, and I have not had enough sleep to glibly document here for you all, so bear with me here. It all muddies together in my mind, and it takes me a minute to sift through my addled brain to make sense of it all.

Sarah has needed transfusion after transfusion; blood, platelets, blood and platelets...about every other day. She started getting fevers, probably due to her neutropenia (fancy cancer-speak for "she has no white cells") and her allergies are acting up, probably due to the extra construction dust that has found it's way from the lovely new tower through the vent system and into our room. Probably nothing to worry about, but these medical peoples are AMAZING, and they care for our little girl so much that they want to be SURE it's nothing, so they ordered an x-ray of her chest, which was clear, and started her on antibiotics for the fever, plus called in the infectious disease team, just to be safe. They may even go the extra mile and do a head CT, just to be extra sure.

I asked the nurse practitioner today how we would know if this was working, and she said that they are looking for peripheral blasts, meaning leukemia cells in her blood. She double checked for me, and said that Sarah didn't have any until today, but not to panic yet, that it could just be from the GCSF they are giving her to help her white cells recover faster. They are going to watch her for a few days/weeks before they conclude anything one way or another. We are literally just waiting and seeing.

The antibiotics have started up the shitstorm, although it doesn't seem to be as bad this time, at least, not yet. Maybe it's because she's still eating, whereas when she's on chemo, she doesn't eat anything. Her appetite has dwindled to about 50% of what it was at home, although I am happy to report that I did get her (with Kara's help/bribery! lol) to eat an entire bowlful of rice (a good sized tupperware bowl at that!) and FOUR bowls of popcorn, with a full box of apple juice! When your child hasn't eaten anything in days, this is a  major coup.

The major thing that is concerning me at this point is Sarah's mental state through all this. Sarah, as anyone who knows her can attest, is as happy-go-lucky as they come. She has her moods, to be sure, and her tantrums are horrific and Oscar-worthy performances. But Sarah isn't one to hold a grudge, or be sad about anything for too long. Things just tend to roll off her back. It's who she is. Even when things bother her, she sheds a few tears, then moves on, She is VERY easily distracted, and (usually) easily comforted. She doesn't dwell (unlike mom and this paragraph! lol) So to see my baby girl get solemn, quiet, even look sad, that is new and uncomfortable territory for me. At least when chemo knocks her down and she's just lying there looking (and feeling) miserable, I know why. It breaks my heart, and I do my best to make her comfortable and happy, but I at least know what's wrong, and I can do something about it. Not only is she sad, but she doesn't want to talk about it, and this KILLS me! I have asked the counselor to come talk to her, and the nurse practitioner is going to call Ashley in, too, since she knows and trusts her as well, to see if we can't get this girl happy again. I don't know to the letter what's wrong, but my mommy senses are telling me, and from what I can get out of Sarah herself, I think I'm right, that while she misses home, and she hates going through all this crap, the main thing bothering her, is what bothers every woman going through chemo.

It doesn't matter how tough or badass, or feminist you think you are. Every woman I know would cry her eyes out if her hair started falling out in clumps. Especially when it's not the first time, when you finally thought it was going to get to grow longer than a quarter inch, and when it won't all fall out at once. Oh, no, that would be almost bearable. No, her hair decided to leave one lopsided Friar Tuck bald spot on the side of her head, and the rest is just thinning out gradually, leaving little hairs all over everything. I put a cute hat on her, she looked at me with the most heartbreaking look, like I did it because I was ashamed, like I understood NOTHING about her pain, like I tried to put a band-aid over a bullet hole. I told her she only had to wear it if she wanted to, that I thought she was beautiful with or without it, and she ripped it off and threw it across the room. It doesn't matter how many times I tell her, or the nurses or the doctors or anyone else tells her how beautiful she truly is (STRANGERS have stopped me on the street, simply to tell me how gorgeous my daughter is! Literally. I know I am given to hyperbole, but this has literally happened, on more than one occasion.), it doesn't matter because my daughter is the epitome of girly, and she can't be girly with a bald spot on her head. I told her I would make some special bows and hats, just for her. This brightened her up slightly, for a second. Then she went back to being sad. I offered to cut my hair off, which I haven't cut in three years. She didn't answer. I don't know whether it's wise to tell her that her hair falling out makes me sad, too. So much so, that I saved the first lock, plucked it from her pillow, tied it with a ribbon, and put it in my cell phone case. The very first time her hair fell out, I saved all of it, every matted curl. A year into her treatment, I came across it and threw it out save for one tiny lock, I have it in a little ceramic box that says "My first curl" on her dresser. That first curl snipped from a baby's head is supposed to be tender and sweet, this one is just plain sad, because I will always remember where it came from.

The other thing that has her sad is homesickness, I think. Yesterday, she was crying when Dr. Kirov came in because she missed Scarlett, my mother's annoying yet loveable Malte-Poo. Dr. Kirov, who would do anything, I believe, to make this little girl smile, told her that we could have my mom bring the dog downstairs, and she could go down there with a mask on and visit the dog down there. I swear, I heard angels singing when he said this! God bless Dr. Kirov! She stopped crying immediately, and my mom made it happen today. We went downstairs (dummy me forgot the camera!) and Sarah just patted the dog's head for about a half hour, without a word. Both baby and doggie were content. She didn't say anything, but her mood was much improved after that, although she was tired. Then, when we came up, I started to unpack the bag of food my grandmother had brought up (because we're Mexican, and food is the answer to EVERYTHING!!!!) and her eyes lit up when I unpacked the small tupperware bowl full of Spanish rice. She started licking her lips, which is her newfound gesture for, "It is acceptable, and I will eat that." She moaned delightfully through two-thirds of the bowl, then Kara bribed her with stickers and a prize from the prize box to eat the rest. She ate the whole thing. Hopefully the counselor can give me some pointers on what I can do to help her feel better tomorrow.

As for me? I apparently am a robot who feels nothing unless I hear that Ronan song, (damn you, Taylor Swift!) or Grey's Anatomy is on. Cry-baby that I was in my youth, I apparently now need a catalyst to cry. Lord knows there are enough reasons right in front of me, but I have to make myself immune to get through it. It's the only way I can. I didn't watch the Stand Up to Cancer special on tv, accidentally on purpose, because it makes Sarah nervous when I cry. But the next day, it was all over youtube. So I watched. Like an idiot.And cried through the whole thing.

Why is it that it's only through someone else's pain that I can find my own anymore? Most normal people avoid things that make them cry. I seek them out. It makes me feel better to know that I'm not crazy. That song Ronan makes me cry because it reminds me of us. There is a part of me that wants to let her go, to release her from this pain. I don't want to give up, and I WON'T, but I hate that she is suffering, over and over and over. She is all I ever wanted out of life. My own child. Most little girls have career aspirations of one sort or another. If we all became what we wanted to be as little girls, the world would be half-populated with ballerinas and veterinarians and fairy princesses. Me? I was the girl who got in trouble with my religious grandmother for "breast-feeding" my doll because I had forgotten that little bottle with the fake milk that disappears. I didn't aspire to dance, or save panda bears. I aspired to  have babies.

Fast forward to me in my late twenties, married with three stepchildren, miscarrying three babies in two years. Then I became pregnant with Sarah. And she stayed. We had one perfect year. And then she got sick, and here we are.

Holding on to a child with cancer is like holding on to a handful of sand. You can hold on to the bulk of it, but they lose so much of the people they could have been, so much of their childhood. Going through this process more than once is like trying to pass that sand from one hand to another. Each time, you have less and less and less until they're just gone; and all that's left is residue. Memories where your baby used to be.

Still, with all of this, as crazy as it sounds, I wouldn't trade it for anything. With all of this heartache, this has still been "my best four years" because Sarah was in the world for all of them. She makes me laugh with her cleverness and her caprice. She is such a little person now. She is the best person I know. And that is worth fighting for.

Tuesday, September 4, 2012


Today was uneventful and eventful at the same time. Today, Sarah had her DLI (Donor Lymphocyte Infusion...Google is amazing!) and it may have been the least remarkable thing that happened today. A tiny little syringe with what looked like blood, a quick push into her broviac, there, done. Seriously, took like twenty seconds, and yet, our entire future depends upon it. Those twenty seconds could mean a lifetime with my daughter.

Last night, Sarah spent the night throwing up, so she didn't go to bed until 3 am. She spent the last hour crying because I wouldn't lay down with her, not wanting to completely derail all of the training that I had spent countless hours instilling over the past two months. She said I needed to take care of her, that I needed to protect her. At one point, she said that she didn't want to fight anymore, that she wanted to go home. I explained to her that if we go home now, she will have to go to Heaven. I explained that this is the battle ground where we fight the cancer monster. This is our arena. If we go home, we forfeit. Game over. She thought for a moment, then said she was sorry, that she thought we should stay after all. It absolutely wrenches my soul that I have to be discussing this with my four year old. But what else can I do to make her understand? I don't want to bombard her with too much information, or make her try to understand things she is incapable of understanding. But at the same time, I have never lied to my daughter, and I don't intend to start. The sad reality is that if we go home, we lose. I thank GOD that she chose to stay. I don't know what I would have done if she had said she didn't care.

Once she was finally asleep, after two chapters of A Little Princess, seven lullabies, and a whole lot of cajoling and threatening, I managed to fall asleep around 4 am. Imagine my surprise when I woke up to find  my grandmother standing over Sarah's bed at 10 am! For a moment, I thought I was dreaming. I mean, my grandmother (at least, this one) is alive and well, but I couldn't imagine why she would be there so early and on her own. I blinked once or twice to ensure my eyes did not deceive me, and then I asked her how she got there. A friend had given her a ride, she said, and she meant to stay until my mom came after work, so that I wouldn't have to be alone today. I was grateful. While the infusion itself was anticlimactic, it's still a huge deal, and I was comforted by her presence today. Also making an appearance was Daddy, who proved himself to be helpful and made Sarah very happy with his presents and his presence! :)

Then, my grandmother's dear friend, the owner of King Taco, Lupe, came and brought about twenty burritos (fat ones) for our "guests", although no one else but my mother came, so we treated our wonderful nursing staff to some bomb ass burritos! :) Kara said that it was the ultimate pick-me-up.

Sarah was irritable today, to say the least. Due to the rash that seems to appear no matter what they give her, they keep giving her hydrocortisone to counteract it, but hydrocortisone is a steroid. I think I may have mentioned once or twice about my already headstrong daughter, and the effect steroids have on her. Crazy mood swings! It's like watching a little pregnant person. One minute she's laughing, crying the next. Kara says, "Hello, Princess!" Sarah smiles. Kara says, "Would you like some breakfast?" Sarah screams, "NO!!!!" Basically, her reaction to everything today was largely inappropriate. I tried to be sympathetic, while still maintaining some boundaries. Much like in pregnancy, there is much that is ruled by the hormones going crazy, and then there is a certain point where you're just being a bitch because you know people are making allowances for you. As a mother, it is my job to let her know in no uncertain terms when she is crossing that line. Which I did after she threw a huge fit before all and sundry because I asked her to walk ten feet to the nurses' station and back. Yeah. That was fun.

Kerry is her nurse tonight, and after the stern yet gentle talk I had with my daughter, Sarah apologized to Kara before she went home and has managed to be nice to Kerry so far, although the night is young! lol

At this point, it's a waiting game. We have reached the pinnacle with the DLI, and now we are simply waiting for her counts to bottom out and then come back up, which the GCSF should help to speed along, and then we can go home. Then we go home, and try to maintain some semblance of a normal life, while we pray like crazy that this worked.

As uneventful as the day was, our entire lives, especially Sarah's, depend on today. 10 ccs of bone marrow could give her everything, or leave us with nothing. Today is a HUGE gamble, but it's a risk we are willing to take.