Goodbye, Baby Girl...

If you are reading this, chances are you already know what this post is about. It's like a bad movie. You know what's going to happen. You know what comes next, but you can't help but hope that you're wrong. Then there it is, reality exactly as you knew it would be, but hoped it wouldn't. After four long years of fighting, Sarah Elizabeth Gomez lost her battle with leukemia.

On Friday, April 12, 2013, Sarah had an appointment in OPI for labs, blood and platelets, which were very badly needed. She had spent the last two days on the couch, tired and cranky and miserable, barely eating, and in excruciating pain every time she had to pee. I found myself having to sit on the floor in front of her potty, holding her hands, and teaching her to breathe like she was in labor. Every time. So by Friday, I was eager for her to receive her blood products, if only so that she would feel a little better and have a little more energy. Labs were taken, blood was started, and then the doctor came in. Dr. Horvath, the wonderful doctor who gave us three good months with Sarah, was at a conference, so Dr. Torno, the most compassionate of the doctors, came in. She did the usual once-over, palpated her abdomen, then looked at me with tear-filled eyes and gave me a hug. In my mind, it was a compassionate hug for the slow decline Sarah has experienced over the last four years, for how hard she had to fight. I was not truly prepared for what she said next. Four words that changed my life forever. "Oh, hon....we're close."

Thankfully, Sarah was asleep from the premeds since blood had already been started, and she didn't see the torrent of tears that found their way down my face. Dr. Torno explained some things I can't quite remember now, and then I managed to calm myself enough to ask her how long Sarah had. She shrugged and said a week, maybe two at the most. A week!!! She asked what I wanted to do, I told her that I wanted to take Sarah home. Sarah hated being inpatient, and we had already discussed this months ago, what we would do if and when the time came. My intention was to take my beautiful daughter home to die in her bed surrounded by her beloved dolls. When Dr. Torno left the room to make some calls, I burst into tears in earnest. I texted my friend and fellow cancer mom, Andrea, because I knew that her son had an appointment in the area that day. I knew better than to call my mom at work, and I wasn't quite ready to deal with Sarah's father. I needed time to wrap my head around this, and I needed someone to be there for me. I will forever be grateful for Andrea. Our case worker and the social worker came to talk to me about hospice, and I asked that we do it in another room. We went, and after I was comforted, we discussed some details. Andrea came in shortly thereafter, and once all was decided upon, the official people left and Andrea and I stayed in what was meant to be the isolation waiting room and was in fact a sort of makeshift staff lounge. We sat there for a long time, she held me as I cried. Hard. We talked it through, and then her husband brought me lunch. I went back to my room, and by that time, Dr. Horvath called me from her conference and said that she would like Sarah to be admitted so that we could get her pain under control before we put her in hospice. I agreed, because I trust all of the doctors implicitly, but especially Dr. Horvath. I called my mother, and managed a call to Sarah's father, who told me to call him when we got home. Yeah. Sarah woke up, pitched a fit because she hates being inpatient, but I held her and explained that the doctors were going to make her stop hurting and then send us home. Luckily, I still had several "go bags" with clothes, toys and supplies in my car, which I had packed a few days prior when I thought they might admit her, but decided not to unpack, just in case. I went to the car, loaded up the stroller, and by the time I got back, the room was ready.

They sent us upstairs to the Rainbow Room. The Rainbow Room, one of two in the new tower, is basically a death suite. It is the last stop for these little warriors, the most comfortable rooms in the whole hospital where patients come to die. Beautiful, yes. Comfortable, to be sure, but still the last place my daughter ever saw. Sarah made her peace with being in the hospital, they gave her the infusion of platelets, and I put away her things while she played on the bed. The blood had perked her up and she was in good spirits. I plastered on a smile for her sake, and truly tried to soak up every moment. A loudspeaker announced that Turtle Talk would be starting soon, so I got her ready and took her downstairs. Turtle Talk is where Crush the Turtle from Finding Nemo comes out on this huge screen on the second floor lobby and actually interacts with the kids. It's pretty awesome, and Sarah loved it when he chose her! Dr. Torno happened to pass by, and was happy to see her looking a lot better than she had that morning. Can you blame me for having just the tiniest bit of hope that maybe they were wrong? Or that a miracle might fall out of the sky and that my baby might be on every news channel in the world as a little girl who defied the odds?

When the room was still at the end of the day, and it was just the two of us, I asked her as I was tucking her into bed if she understood what was happening. I didn't elaborate. I wanted to see how much she knew. She said that she understood, but that she was scared. I tried my best to reassure her, that everything would be fine, that we had discussed Heaven before, and that she would be content and happy when she got there. She expressed concern that we wouldn't be together, that I would be all alone, that she would be all alone. I dispelled all of these fears as best as I knew how. The one that broke my heart was when she said to me, "Momma, when I'm in Heaven, I won't have your love anymore." I started to cry, of course, and I told her that no matter what, she would ALWAYS have my love. I reminded her that our hearts were connected, even when we weren't physically together, something I had told her before to alleviate the separation anxiety that began after her father left. She was constantly afraid that I was going to leave her, too. I reassured her that we would always be together, that she could see me whenever she wanted, that I would always love her, even in Heaven. She wiped my tears and told me not to cry, that it was going to make her cry. She got quiet for awhile, then said, "Momma, I don't mind being in the hospital so much. They take good care of me here." In retrospect, I think some part of her knew she would never leave that room, and she wanted to reassure me that she was okay with it, so I wouldn't feel badly that we couldn't honor her wishes and take her home.

Over the weekend, Sarah's pain got worse and worse. They kept changing her pain meds, upping the dosage, nothing seemed to work. The doctors didn't feel comfortable sending her home, and I didn't argue. What kind of time would she have at home if she was just in pain? But true to form, Miss Bossy Boots had her bucket list all ready. She wanted to go. She had shit to do! Disneyland, of course. The Aquarium, because she wanted to see a shark up close, and see the penguins. She really wanted Sea World, but I didn't think she could make the trip. She wanted to go to the zoo to see the flamingos. She wanted to go fishing, and she wanted to go to the beach. Top Five. And she didn't get to do any of it.

She did, however, get to go on a shopping spree in the hospital gift shop. Kathie and Nick, my sister, my best friend from childhood and her daughter all accompanied us. Sarah had an amazing time looking at all of the possibilities, because there was no way I was saying no that day, and she knew it. She ultimately ended up with a pair of lady bug wings, two hello kitty cups, a five sided crayon, and various other small items that escape my memory. There was some issue because I tried to pay with a $50, and apparently, they couldn't make $20 worth of change, and I was a terrible person for even attempting to pay with anything larger than ones. We made fun of the clerk on the way out, and Sarah was happy. My dad says, typical woman, it figures she would squeeze in one last shopping trip. I am glad she at least got to do that.

After two days in the hospital, I yelled at her father over the phone and told him to get his sorry ass down there, and that it was inexcusable that he hadn't come when I called him before. He said he didn't  know it was like that, that I always say she's dying. I completely lost my shit in the hallway, yelling at him, that yes he did effing know, that I always let him know what's going on, and a bunch of other things I'm sure weren't so nice. It was heated enough that the charge nurse came charging down the hall, and I immediately started making apologetic gestures so that they didn't eject me from the hospital. I was swiftly ushered into a conference room where I could yell at him in peace. He came, and I had to beat it into his head that she was dying. He had been living in denial all this time. He couldn't accept it, by his own admission, wouldn't accept it. I stood there, watched my husband cry, wavering between sympathy and apathy. I loved this man once. He is still my husband. I should have been able to comfort him, to hold him, we should have been able to go through this together. But we couldn't, because he has a girlfriend. So I stood by and watched him cry, watched him come to the realization that I had spent four years coming to. She was really leaving us, and there was nothing we could do. 

Monday, she literally slept all day, as in, 24 hours straight. She got up twice to pee, both of which were excruciating experiences, but then went straight back to sleep. By the next day, her pain was out of control, she was irritable and inconsolable, and the only thing that made her feel any better was when I would rub her feet with essential oils. Andrea had told me that peppermint oil really helped her son with his headaches, so I bought lavendar and peppermint, and mixed it with organic olive oil, which I stored in a specimen cup that had previously contained some of Sarah's supplements. Recycling is cool, y'all, but I was seriously freaking people out with that oil in the specimen cup! Because of the color, and the fact that it was in a specimen cup, people seriously thought it was pee, including the trained professionals, and I got a lot of weird looks! But it made her feel better, so I rubbed her feet, sometimes all day. It was only by the grace of God that my hands never got tired, no matter how long I rubbed. The oil relaxed her and made the room smell like gum at the bottom of grandma's purse, sort of warm and comforting.

Tuesday she went fast. She had visitors, a lot of visitors, and I think it was a bit overwhelming for her, because she was irritable all day. It was a bit overwhelming for me, to where when my friend Giselle suggested going downstairs for coffee, I jumped readily at the chance. When we got back, The doctors decided to sedate her, and I asked them to clear the room, to make it easier for both of us. Nurse Kara did it gladly. How blessed were we that Sarah got her two favorite nurses on the day she died, and that it wasn't by accident? Kara called everyone but the mayor to be sure she got Sarah that day. By the time I got back from coffee, Sarah was irritable and being mean to her cousins, whom she had never met before. They were climbing on her bed, and she said that she didn't want them to do that because she didn't like people she didn't know, and that they were going to get her bed all dirty. I took one look at my baby, and I instantly knew what was wrong, as mothers do. I looked into her eyes, and I said, 'There are too many people in here, huh?" Sarah's eyes filled with tears, she pouted and nodded her head, so grateful that I understood without her having to express it through her pain and suffering. I am so grateful that I was able to understand her in those final moments in order to make her more comfortable. Immediately, Nurse Kara called me out of the room, and Dr. Kirov was in the hallway, telling me that Sarah was progressing toward death faster than they had anticipated, so they wanted to sedate her at that moment to try to minimize her pain. This news disheartened me greatly. Trevor's mother had been begging them for days to sedate him, and they wouldn't because he wasn't far enough along yet to justify it. And he had been there a full week before Sarah. He had far more complications, his pain seemed greater. Yet, we had been there for three days, and they were telling me it was time. Dr. Kirov grabbed my arm, squeezed it in comfort, but would not meet my gaze. I have mentioned before that Dr. Kirov's body language is very telling. I knew in that moment that I was going to lose my daughter forever. This was it. There was no more hope, no more waiting for 11th hour miracles, this was it. It was only a matter of time before I said goodbye to my daughter for the last time.

I called her father out into the hallway, explained to him what was happening. Kara and I had already discussed clearing the room to make it more comfortable for Sarah, and she said that she would play the heavy. Sarah's father was still in denial, still asking if there wasn't anything else they could do. In my frustration I remember thinking that this child would be dead a week and he would still be asking if there wasn't anything else they could do for her. I understand he was grieving just as I was, probably worse, because he was playing catch-up, no longer able to deny the reality, but seriously, where the fuck has he been all this time??? I tried to be patient, then gave up and went to be with my daughter. Kara cleared the room, administered the first round of Versed. I climbed into bed with Sarah and held her like an infant. Nurse Kerry, Sarah's favorite night nurse, took over the night shift, and I was so grateful to see her face. I could not have gotten through it if it had been anyone other than her favorite. Over the years, we have become friends, family even. It felt right that they were there to say goodbye. I asked Nurse Kerry to send people in one at a time, so it wouldn't be too overwhelming for either of us. My grandmother started to protest, asking if I was serious. I assured her that I was, and asked her to please not start with me right then. She stopped, and left the room. Slowly, people filtered in one by one, until the room was filled with people again, but only the people who Sarah loved the most. Andrea and her husband, Eric. My mother, father and stepmother. My sister (my other sister and brothers were down the hall), and my brother, Ramon and sister-in-law, Diana; Kathie and Nick, who are as close to spiritual godparents as it gets, I think. Kathie's mother, Stella, my cousins, Michael and Jenee. Their mother, my aunt Rose, and her other daughter, Paula. My best friend from childhood, Esther. From what I hear, there were more people in the conference room down the hall, but those are the people I remember in the room. When Stella came in, I was holding Sarah in the bed, and she said, "I feel like there should be lullabies." We all agreed, and my cousin, Michael put the Disney channel on Pandora on his iPad. The room filled with Sarah's favorite music, and it lightened the atmosphere tremendously. We started to tell "Sarah stories", reminiscing about all of the silly things she would say or do, how clever she was, how wise and how brave.

 Instantly the room filled with love and laughter. It is impossible to think of Sarah without being happy, without laughing. That's the way she loved things to be, always happy and full of love. During our conversations, Sarah would moan periodically, trying to contribute to the conversation, I think, and being physically unable to respond. She wasn't able to swallow, she was so heavily sedated, but her mind was still very present. I would try to put the suction tube in her mouth, and she would bite down so that I couldn't get it in her mouth. Then once I  had it in, she would bite down so that I couldn't get it out! A little stinker to the end!

Her father made some excuse about having to take Mariah, his daughter, home so that she could go to school the next day. In my head, I called bullshit, but didn't argue. Her sister was dying, like she was really going to go to school the next day! But I had more pressing problems at the moment, and I didn't have time to argue. It was his conscience, his guilt to deal with if she died and he wasn't there. I knew where I was, and I was only in charge of myself. This is what I kept telling people when they would grouse to me about his behavior.

Sarah released her bladder after awhile, and it got all over her, me and the bed, so I had no choice but to release her, clean her up, clean the bed, change my own clothes. Once everything was done, I noticed that she was still in pain, so I laid her down on the bed and got out the oil. I sat at the foot of the bed and began to rub her feet. Through her sedation, she moaned, in protest when I put her down, but when I began to rub her feet, she relaxed instantly.and the environment got very mellow, very serene. The lights were dim, and everyone was so calm. The love and tranquility was palpable in the room. "Hallelujah" by Rufus Wainright came up on Pandora, and I started to hum, because it calms Sarah when I sing to her. In my mind, I replayed the night she was born, when I spent the entire night singing softly to her while her father slept. It was an absent-minded thing on my part, yet not. I would have done anything I could to ease her pain in that moment. Then Nick started humming with me, and on the "Hallelujah" parts, everyone started singing in earnest. I think the only reason there was humming was because no one knew the words! :) It was soft and loving, a mother's lullaby sung by everyone who loves her. I wish that I was articulate enough to paint you a picture as beautiful as the one I can recall in my mind. In that moment, I think we all caught a glimpse of heaven.

 The cross-talk started up again, and Sarah through her sedation said my name three times. "Mom...Mom....Mom..." I mentioned before that Sarah was so heavily sedated that she couldn't even swallow, much less form words. The first one I didn't hear because I was talking to Kathie, and Kathie was the one who stopped our conversation and said, "Wait, did she just say 'Mom'?" We all stopped to listen, and then she said it twice more. I reassured her that I was there, that I loved her and that she was safe, that she shouldn't be afraid, that everything was okay. Someone mentioned that they hoped Sarah wasn't waiting on her father, because he more than likely wasn't going to return. Later on, I found texts in my phone from him that his "aunt" (I am not entirely convinced it was his aunt, as his aunt was his excuse during the two years he was carrying on with that woman) was having a hard time with Sarah's imminent death, and that he was trying to console her. It upset me, because Sarah's father was very important to her, and she needed him. His "aunt" is an adult, and her feelings could have waited. Not to mention that fact that if it were me, I would have sent him back to the hospital immediately, after giving him what-for for even leaving in the first place. But I digress. Someone (I honest to God cannot remember who, I think it was my aunt, but I can't be sure) said they hoped she wasn't waiting on him, and then her breathing started to get extremely labored. Her entire body convulsed with every breath, I have never seen anything like it, not even on television. It is awful to have to see your baby like that. I called Nurse Kerry in to up her pain meds, figuring she was in pain, and Kerry listened to her chest and confirmed that these were her final breaths. I put my hand on her chest, murmured to my baby through my tears that it was okay, that I was there, that she shouldn't be afraid, that I loved her. Underneath my hand, her heart stopped beating and her chest went still. At 12:54 am, on April 17, 2013, Sarah Elizabeth Gomez left this earth and everyone who loved her.

My eyes widened in horror and disbelief, how could this be happening? I shook my head, and broke down. My sobs turned into a full blown panic attack. I haven't had a panic attack in years, but I had one in earnest then. I had been holding in my sorrow for days, every time I would cry, it would upset Sarah, so I tried my best to keep it from her. All of the emotions I had been holding in all that time tried to come out all at once, and it was too much. Nurse Kerry crouched down underneath me, raised my arms above my head and told me to breathe. I calmed down eventually into quiet sobs, and Kathie, Nick, and everyone reassured me that I was the best mother to her, that I had done everything I could, that she knew how much I loved her and that I had done everything to make her happy and comfortable. Kathie said that I held the perfect balance between letting her be who she was and maintaining discipline, which was not easy with a child as willful as Sarah was, and Nick said that he was honored that Sarah liked him at all because she was so selective. She either liked you or she didn't, and sometimes, she made you work for it, but once you were in,  you were in. This lightened the mood some, and one by one, everyone filtered out of the room. Nick called Sarah's father, and he returned some time later, saying, "No...no..." over and over, like he couldn't believe it. What did he think was going to happen? He started hitting and kicking the walls, lightly, thank God, because I was not about to pay for that shit, and everyone watched in silence. No one moved to comfort him. Finally, my cousin Michael, compassionate, big-hearted creature that he is, went to attempt it, and that only made it worse, which is why I didn't attempt it myself. I know this man. They both disappeared into the bathroom, which I assumed was to contain him, but I was told later that he actually started throwing up in there. A few minutes later, he left the room, practically running, and I assumed that he was just going out into the hall, or maybe outside for some air or even a cigarette, but he left the hospital and never returned.

I was left alone with her for awhile, and Nurse Kerry offered to let me bathe her. If you had asked me a year before, or even a week before if I would be willing or able to do this, my answer would have been a big fat HELL no! But I have done a great many things in the past month that I never thought I would be able to do, and in that moment, I knew I would regret it for the rest of my life if I didn't. I bathed her the way I always have, the way I did the very first time when she was only a few days old, so soft and sweet and new. I said goodbye to every last inch of my daughters body, to her little hands, so much like mine, to Katie and Cafeteria, her feet. Katie was the right, a girl, and the trouble maker. Sarah had neuropathy from the chemo, and it manifested the most on the right side, so when her leg would go numb, she would trip a lot, so Katie got a bad rap. Cafeteria was a boy, Katie's brother, and he was more docile, but made "faces" at Momma. Cafeteria's "faces" were made by Sarah stretching her toes out as far as they would go. She made up these personalities for her feet, this whole back story, when she was two. Sarah's feet were my favorite part of her, her little monkey toes! All of these emotions, all of these memories came swelling to the surface at once, five years of a life, and it was all over in an instant. Kerry helped me with the bath, and by then, she had started to stiffen up. I realize that this may be hard for some of you to read, and I am sorry if it offends anyone, but this is the reality. This is what happened, and I wouldn't be doing my daughter justice if I didn't tell her story properly. As hard as it is for you to read, it's the truth and it was 100 times harder for me to live.

Sometime right after she died, my family had packed up all of our things and loaded them in the car, so I didn't have any fresh pajamas for her, so I just put the same ones on. Everyone who knew us knows that my daughter was always clean, NEVER had dirty clothes on, and always looked a fashion plate. She was better dressed than I was most days. But what did it matter now? She was gone. They were only going to remove them, anyway. Kerry helped me to roll her over so that I could get the pajamas over her back, and when she rolled her back, some blood had started to leak from her nose. My eyes filled with fresh tears. It was the hardest thing to have to see my baby this way, to see the hard physical evidence that she was truly gone. Kerry apologized profusely, and I reassured her that it wasn't her fault, that it's a natural process and that there's a reason why they only allow you to stay five hours post mortem. She apologized more, anyway, asked if I needed more time. I shook my head, explained that she wasn't in there anymore.

Kerry had me sign a release form so that once we found a mortuary, it would be easy on their end to release Sarah. She got the charge nurse, Karen, who is normally tough as nails, but was shedding tears profusely, more than I was at that moment, to come and sit with her, assuring me that she would never be left alone. Karen gave me a hug, entered the room to sit next to Sarah's bedside. I looked longingly back toward my baby, and I lingered in the doorway, physically unable to move. I tried several times to propel myself forward, and I just couldn't. I have never left Sarah behind in the hospital. Most nurses can tell you that unless you kick me out, I don't ever leave the room unless Sarah is with me. It was the hardest thing I have ever done to walk out of that room of my own volition and leave my baby behind for the last time. Andrea had stayed behind to be with me, to drive me home, and she held me all the way downstairs as Kerry escorted us down. It seemed unconscionably long as the valet went to retrieve my car while we waited in the new CHOC ER, which was surprisingly empty. I sat in a chair, visibly in shock, clutching the blanket that had  been covering Sarah in her final days and inevitably her final moments, and Castles, her best toy, the trusty pink unicorn who never left her side during her four years of treatment. Andrea drove my car home, and she asked me if I had any thoughts about funeral arrangements. I decided in that moment, remembering the blood that had come out of Sarah's nose, that I didn't want a viewing. Sarah was very close to Andrea's children, her daughter Savannah was her best friend, and I wanted them to be able to say goodbye without having to be traumatized by seeing their friend that way. After what I had seen that night, I didn't want to see her that way anymore. When I thought of Sarah, when I think of her now, I don't think of her death. I think of the life she lived, how happy she was, how happy she made everyone around her. To date, I have only ever met one person who wasn't completely in love with her. I wanted to honor her memory, so we decided on a memorial service, where we could all remember this gorgeous creature who graced our lives, remember the beauty of her life, not the bitterness of her death. Sarah would have wanted it that way.

We got to my house around 6 am, and it was equally as hard walking into the house without Sarah as it was leaving the hospital without her. I broke down in tears, Andrea stayed for a moment, then drove my car home. My grandmother made my mother and I some chamomile tea and toast, I don't know how long it had been since I had eaten. My mother and I talked for awhile, and the first phone call came about an hour later, from my estranged uncle's wife, to whom we hadn't spoken in about three years. My mother hung up on her, and we talked about that for awhile before the melatonin she and Andrea made me take started to kick in. I climbed into my bed, covered up with Sarah's blanket and held Castles. I put on a Netflix movie for background noise. I slept for a few hours, then got up and dressed so that we could attempt to make some funeral arrangements. I couldn't bear the thought of my baby laying in that morgue any longer than was absolutely necessary.

We were offered discounts with two different funeral homes, but something, probably my bossy daughter, kept telling me to go to Rose Hills. It's beautiful there, and Sarah loved flowers. We were going to cremate her, and bring the ashes home, but something kept telling me to go there. So I told my mom that we could go see what it was about, and if it was too expensive we would go with one of the other funeral homes. As it turns out, it wasn't bad at all, they were more than supportive and helpful, and in a chapel that seats 200, there was still standing room only.

I did not hear from her father for two days, until I was forced to call him because I wasn't allowed to make any funeral arrangements without his consent. I dragged him in there by his ear, and he sat as far from us as he could, since I had my mother, my aunt and my pregnant sister just waiting for him to say the wrong thing. The funeral coordinator asked if we would be separating the ashes, indicating Sarah's father out of the corner of her eye. I had listed two separate addresses for us, and given the atmosphere in the room, I think she got the hint that we are separated. I didn't even look his way, and I answered her with an emphatic "No." "No?" she said, again indicating Sarah's father out of the corner of her eye. "No." I replied again, just as firmly. I could feel his eyes on me, but I didn't acknowledge him. He didn't argue. When the coordinator asked what we would be doing with the ashes, I told her that MY daughter was coming home with ME. Again, I could feel his eyes on me, but he said nothing. The coordinator was gracious enough to skip to the part he needed to be there for, and as soon as he signed everything, he left. I wasn't surprised, nor did I care.

We stayed longer, of course, making all of the arrangements, trying not to laugh when they kept referring to my baby as "The Cremains". I suppose it's a technical term they have adopted, a combination of "cremated remains", but given the somber and sympathetic tone they usually adopt when dealing with grieving families, it sounded so incongruous to use a term that sounds like it came off the menu at McDonald's. Kathie, Nick, my sister and I all waxed intellectual (and hilarious!) about it later on. "Back for a limited time! The Cremains!" "Get your Cremains while they last!" "Yes, I'll take some Cremains, and a diet Coke, please." Nevertheless, everything was done, and Sarah's father called me later to see what we had decided. I gave him the information, and ended the conversation.

The next few days were a blur of errands and sleepless nights. I can see now why people pre-arrange funerals, although I can also understand why we never did for Sarah. It seemed too macabre, like we were giving up on her, and even her doctors expected her to survive. She was so strong. They never thought, we never thought, she would be the one to go. Sarah pushed us towards what she would have wanted. The gorgeous chapel for her service, the pink urn with the tiara in Swarovski crystals that had to be handmade and normally takes three weeks to deliver but that miraculously was able to be rushed and arrived two days before she was even cremated. The balloon release that was tacked on at the last minute, because several people who don't normally communicate got the same idea at the exact same time. True to form, my little Bossy Boots was still bossing us around.

The service itself was beautiful. Everyone spoke to how incredible my daughter was, and it was an amazing way to honor  her memory, if you don't mention the egregious way her father behaved. Inside the chapel, he was a mess, sobbing, clutching her urn to his chest like a baby, carrying on like anyone would expect of a grieving father. Then he kept going outside, and would be totally fine, talking and laughing with his friends as though nothing had happened, as though it were any other Saturday at the park. Then he would come inside, and put on a show, then go back out, and be fine. This is all second hand from several sources, I was too busy receiving condolences to keep tabs on him. Later on, while I was at the comedy fundraiser the Silver and Black Angels Foundation put on for our family and Trevor's, I received a text telling me that he was out there with his friends talking about his new girlfriend. Later still, it was divulged to me that not only was he talking about her, he was bragging about all of their sexual escapades. AT HIS DAUGHTER'S FUNERAL. I have long since come to terms with the fact that this man has no respect for me. But never in a million years did I ever think he would disrespect his daughter in this way. On the way home, I was quiet for a long time, thinking. Then as we were getting out of the car, unloading, I asked my mother to fill out the divorce papers. When Sarah's father asked me for a divorce back in December, on Sarah's birthday, the last she would ever have, three days before Christmas, the last she would ever have, in a TEXT MESSAGE after 11 years of being together, I refused to lift a finger. I told him that since he was the one asking for the divorce, he could do all the work. But on my way home from my daughter's funeral, I realized that it wasn't about punishing him, it was about setting myself free. The only part of him I still wanted was gone. I had already lost the one thing that mattered the most to me in the world.

Up until then, I had mixed feelings toward him. A lot of anger, resentment, especially for the way he wasn't there for Sarah like he should have been, for the way he should have been there for me and never was. Even some residual love, but all of that left when Sarah did. None of it mattered anymore. I lost the one thing that was everything to me. I have truly lost most of what people value. I lost my job and my foothold in my career path. I lost my husband to a woman who is nowhere near worthy, and nowhere near better than me, I lost my stepchildren, who I helped raise, but they hate me now, God knows why. If it wasn't for my mother, I would be homeless, literally. But all of that, I can rebuild. I can find another man, a better man, one who deserves me, and one whom I deserve. I can possibly have more children, I can rebuild my career, or find a new one. But I will never have another Sarah. Her loss is the most devastating thing one can experience, and everything else is small in comparison. Let her have him, they deserve each other. How could I ever look at him again and feel anything but disgust at his behavior?

Now, I am sort of bouncing around, lost, trying to find my way. I devoted my entire life to my husband, his children, and their many problems, Sarah, and Sarah's illness. For the first time in my life, there is no one for me to take care of, no one for me to mother. I don't quite know what to do with myself, but I will say that I am overwhelmed and so, SO grateful for the outpouring of love and support I have received. I have a lot of people on my side, a lot of people looking out for me, the best one being my new angel, so I know that sooner or later, I will find my way. People tell me that they don't know how I am holding up this well, and my answer is always the same. Sarah didn't like anyone to be upset, and if God took her, it was because she was done here. She had fulfilled her purpose, and she touched many lives. If he left me here, it was also for a reason, and I need to figure out what that is. I am just so honored that I was chosen to be her mother, that I was the one who had the privilege of bringing such an amazing creature into the world, and that she did such amazing things while she was here. I am grateful for the time that we had together, grateful for each day that I got to be her mom. If Sarah has taught me anything, it's that each day is a gift, the beauty of life is in it's simplicity. Life is really very simple, it's people who are complicated, and we need to find the beauty in the little things. Life is too short to be anything but happy, so while I cry every day because I miss her SO much, I try my best to be happy because it's what she would have wanted. All I have done her entire life is try to be someone she could be proud of. That doesn't end now. I will always be her mother, she will always be my baby. I will spend the rest of my life trying to make her proud.

Freaking Decitabine, work already!!!!

This week has been crazy, as have been the last couple of weeks/months/years, depending on when you start counting, and I don't even know where to begin, so I guess I'll just dive right in and trust you'll forgive me if it doesn't make any sense.

Healthwise, Sarah's counts have been steadily climbing, and it seems that now that we have hauled out the big guns and given her more decitabine early, her cancer has decided to fight back with a vengeance. Her white cells went from normal to slightly high, to !!!! to WTF? Seriously??? in a matter of days. Normal white cell count is between 4 and 10. She has been riding the 60's all week, and today, day 3 of decitabine, she was in the 80's. Her doctor, our beloved Dr. Horvath, told me not to worry, as she always does, but I can see the worry in her own eyes, the determination to figure something out to keep this little girl here because she wants to win this fight as much as we all do. All of the doctors have told me that while she has been feeling pretty well for awhile, they don't know how long we can keep this up, and really, all we're doing is trying to buy her more good days. Which she has gotten, thankfully, but with white counts that dangerously high, there is that nagging thought in the back of my mind. Are we here? Is this it? I wouldn't hospitalize her if that were the case, I know my daughter, she'd rather be home, but is this where we are? Am I about to lose the one thing I have left?

I close my eyes, and I pray, pray for God to keep her here, pray for God to give me strength to get through this because my own seemingly bulletproof facade is waning. She looks so good. She seems to feel good. She's eating, laughing, playing. I don't understand. Her doctors don't understand. There isn't much they can tell me, other than that we are doing the best we can, and they don't know how long we can keep this up. They tell me to be strong, to have faith, to call with any questions. Dr. Horvath checks her labs from home on her day off and brings my baby flowers from her garden that make her smile. I know these are the best doctors and nurses we could ask for. I know they love her almost as much as I do, and would and have gone above and beyond to keep her safe and happy. My mother's instinct still feels her here, distinctly. I do not feel her pulling away from me. So why am I scared shitless?

I'm scared because numbers are numbers and math has never been my friend. I'm scared because everyone keeps telling me that cancer feeds on sugar and I need to cut it out of her diet, but when my child asks me for a candy bar, and her doctors are telling me they don't know when the last day might be, I don't want to spend eternity kicking myself over a damned Hershey bar. She doesn't get to go to school, or play in the park, or attend birthday parties like normal kids. You want me to slap the cookies out of her hand, too, when all she wants is some semblance of a normal childhood? I know that people mean well, I know they truly have her best interests at heart, but the way I see it, if I can authorize people to poke and prod and cut and pump her full of poison in order to save her life, if she has suffered all of this shit with a smile since she was not even TWO, then let the child eat her fucking Hershey bar in peace. This shit started before she'd even had her first lollipop. I weed it out where I can, but my philosophy is balance. Too much of anything is never good. But telling a cancer mom that she should deny sugar and carbs (which convert to sugar in the body) to her already underweight FIVE YEAR OLD, and that unless she does she is sealing her fate, is tantamount to blaming her cancer and her subsequent possible demise on me. Not cool. (P.S. I have heard the sugar thing from several people, but the person that pissed me off doesn't read this blog, so if you are reading this, don't worry, it wasn't you! lol)

I am trying like hell to just keep my head in the game, trying to control my own frustrations and keep from taking them out on my daughter, because if these truly are our final days, I don't want them to be spent with me yelling at her. I know that if she doesn't make it, I will regret it always. So I hold her close. I read when she asks me to. I kiss her cheeks and play with her as much as I can. I watch her sleep and I pray through my tears that somehow, someway, God will let her stay, because there is nothing else to do. I don't understand this, and I am barely holding on, but I know that HE does, so I have to trust that He knows what He's doing.

More than anything, I have to put on a brave front for my daughter. She worries about me, more than she should. That breaks my heart, but it's true. Today, she saw the worry on my face as I was overlooking the lab sheet, heard me sigh while she played on the floor, and she said, "What? What is it?" I told her that her white cells were climbing too high, and she got scared and asked what would happen to her. I lightened my face, smiled and told her that nothing would happen, that everything would be fine, and I have to believe that one way or another it will be. If this is it, I don't want her to spend the time worrying about something we can't fix. I don't want her to be scared. I am scared enough for us both. This is the loneliest feeling in the world, but I want her to know that she has a world full of people on her side. All we can do is pray that tomorrow brings us better news, and that some miracle will save her life.

And, I could take a few cues from her, you know? Worry only about what outfit I'll wear tomorrow, which Lalaloopsies we'll take to OPI and make poor Mitzy, Paul and Marie earn their paychecks! What should we take for lunch, and what kind of surprise will Dr,. Horvath bring? You know, the important things.

After a long day of decitabine and a port flush, Sarah got a bubble set from the Child Life closet as a prize for being good through her port flush. All she talked about the whole way home was blowing bubbles on the porch. Luckily, there was just enough daylight left when we pulled into the driveway to blow a few bubbles. We sat on the porch, she ran around and blew bubbles at all the cars, laughed when they popped on tree branches or on me. She plucked flowers from the bushes and put them in my hair, I tucked a stem behind her ear. "Let's spread happiness, Momma!" she cried as she spun around in a circle, bubble wand extended. I took picture after picture as the sun set. I didn't want to forget her like this, she will not be this child forever. It takes so little to make her happy, which is ironically why she's so spoiled and has enough toys for ten children. She gets excited when we come home from the grocery store. Thousands of dollars worth of toys inside the house and out, and some soap and flowers is all it takes to make her smile that genuine smile I rarely get to capture on film since she adopted that fake, wild-eyed creepy grin kids get in photos around this age. For awhile, I forgot about her counts. I focused on my child, on her happiness, and that was all that mattered. It is all that matters, the two of us, together.

Valentine's Day sucks....but not really....

So...yeah...I'm sure those of you brave enough to read this are cringing right now thinking I'm going to plunge headfirst into self-pity or some diatribe on how much Valentine's Day sucks for the recently dumped, but don't worry. Not that I couldn't pontificate on both those subjects, but once I pull myself out of my own head, I have to admit today was actually a good day. It's as though God decided that I needed a break, if only a small one. I am living almost every day in an emotional hell that even I am sick of, and I am frustrated as all hell that I can't seem to stop obsessing over this. My daughter is at a critical point in her treatment. We are literally living day by day, and it's pissing me off that I am wasting time mourning people who obviously don't give a shit if I live or die, and wasting time with my precious daughter in the process. I want to be over this already! I want to be done with this, he is! He's blissful and happy with his 20%, or at least he thinks he is, and after everything I've been through, I think I deserve just a little of the same, if not more. If I could just get to a place where I didn't give a shit anymore, I think I'd be happy with that.

So today, I decided to give myself a break and just decide to be happy. No matter what, just be happy. Anytime I started to think of him, or some memory would pop into my head, I would push it out and focus on the day ahead, which I planned to be busy on purpose. I scheduled an early counseling session for Sarah, and then OPI in the afternoon for labs and a visit. I have been dreading this day for weeks now, and up until this morning, I was sure it was going to be a terrible day. But then, this morning, I decided that I was going to be open to whatever blessing God would give me that day. I decided that I was going to just see how it went. If I was sad, then I was sad. If not, even better. I just decided he didn't get to have this power over me anymore. I can't make him love me, I can't make him be a decent and scrupulous human being, but my happiness belongs to me.

So, I decided to be happy. I can give you a thousand reasons why I have every right to be miserable, and I'm sure not one person would disagree with me. But I decided that I was going to find a reason to be happy today, no matter how small. I was going to find the good in today. I got up, showered, got the lunch and the bags ready, Sarah slept all the way up until it was time to leave, she got dressed without a fuss, took her meds, she was in a good mood. We actually managed to leave EARLY for what has to be the first time EVER. We met a line at McDonald's but we had time so it didn't matter. I ordered, and they actually didn't screw it up this time, although they did initially give me the wrong bag. We met NO traffic this morning, and got there a half hour early. Since we had time to kill and it was such a beautiful morning, I decided to park the car at the clinic parking lot and walk across the street to Sarah's counseling session. Not much for a work out, but the extra steps count for something, and the crisp morning air did us both some good, I think. I live for mornings like this one: sunshine, crisp air, beautiful. With the walk, we ended up getting to her session about five minutes early, so we started our breakfast in the waiting room, I gave her counselor a quick debriefing, then I was politely kicked out by both counselor and patient! :)

I remembered my coffee and breakfast this time, and I managed to get a little work done on one of two baby blankets I must have finished by August (did I mention I'm going to be a double auntie! My sister and sister-in-law are both pregnant at the same time. I'm super excited!), and then Sarah and I hung out in the car for the few hours in between that appointment and her clinic appointment. I must be doing something right, because most kids find waiting in the car boring,  but Sarah loves it! She even asks to do it when we don't have to! We played Mini Lalaloopsies and had some snacks while we had a little music education in the car as she played this Motown CD she got from the treasure box awhile back.

Once her clinic appointment rolled around, Sarah got to play with some therapy dogs and have everyone fawn all over her Valentine's outfit: White, long-sleeve shirt with a lady bug on the front that says ":Love bug", red tutu skirt and red leggings, with red mary-jane shoes, and red headband with red ladybug ribbon sculpture, hand-made by Mommy. She made Buddy the Therapy Dog follow her to room, where he "played" (read: attempted to eat) Lalaloopsies and then promptly fell asleep.She handed out Valentine's cards and chocolates to her favorite nurses and the doctor. She put on a show with Dana, one of said favorite nurses. Her labs came back great, low white counts, (which is what we want) and she didn't need blood or platelets, but I do have to keep an eye over the four day weekend, and her chemo is temporarily suspended, which means, my baby is all natural this weekend! I had to comb her hair this morning! Other than my deep emotional pain, life is good.

Highlight of my day? Sarah was playing around in the den, and she said, "Look, Momma, I can jump!" Now, mind you, she says this often, and her idea of "jumping" is more of a skip, where she lifts first one foot and then the other off the floor. Sarah broke her hip at 20 months, which is how we found her cancer in the first place, and that plus neuropathy from chemo has delayed her physical development tremendously, so she never learned how to jump, or run properly. She can't skip, or balance for very long. She was in physical therapy for years, but when she relapsed for the third time and we started running out of options, I pulled her out for several reasons: a) she hated her therapist; b) I kinda hated her therapist, because it was kinda obvious that she wasn't as totally in love with my kid as everyone else is, and when I was asked to sit in on sessions like they do with the naughty kid at school, it raised an eyebrow with me. Then I sat in, and I realized that yes, Sarah was giving her attitude, but only because was receiving attitude. Which brings us to c) At this point in her treatment, we're running out of options and time. Some of these chemos were draining her. If we're limited on time, I'm not going to waste it arguing with her to do something she doesn't want to do, then reprimanding her for being rude to someone that I am having to restrain myself from being rude to. If she was short on time, I wanted her to spend it doing stuff she loves, not fighting with her to do stuff she has no desire to do. Who cares if she can jump?

But today, she actually did. When she said, "Look, Momma, I can jump!" I was expecting the same, sort-of jump that she always does, one foot at a time, and I was all ready to feign my praise and enthusiasm, like a good mother. So imagine my surprise when she actually did it! Total lift-off, both feet off the ground! Then, like mother, like daughter, she started over-thinking things and started doing the old standby hop-jump thing, but then she'd get excited and jump for real. Seems like such a small thing, but for us, it was huge. Most parents spend their time yelling at their kids for jumping. I was yelling from excitement. Not only is this a major milestone for her, but it was exactly what I needed to pull my focus away from this man and put it back where it belongs: on her.

When I leave him and my thoughts of him out of the equation, I can only thank God for all of the blessings that he gave me today, and feel proud of myself for allowing them in. I think that's half the problem with the world. It's not that God doesn't want to bless us, or even that he doesn't. It's that most of us are too stubborn and set in our ways to let them in. So, from now on, I am choosing to let in the light. It won't always be easy, and I know that my pain is far from over. Hell, the way he's going, he'll probably have her knocked up by our wedding anniversary, but all I have to do is let in the light. All I have to do is take my power back and choose to find the good in each day, and the rest will fall into place. It got me through today, and it will get me through tomorrow, too.

New beginnings...

So, it's been about a month since I posted, but I have been going through some thangs! Came to realize my marriage wasn't what I thought it was at all, mainly because my husband wasn't the man I thought he was at all. I caught the flu, and that didn't help. My mom took Sarah for a few days so that I could get some rest and brood in peace, and it helped, a little. I'm over the flu, trying my damndest to get over my husband, and trying to stay distracted because I've had this stomach ache brought on by stress that I haven't had since I was a kid. If I stay distracted, it goes away. When the house is quiet and I have a minute to myself to think, it comes back in full force. I am not the first woman in the history of the world to have a philandering husband who is not as strong as I thought he was. I know this. Bad country songs are made of these things. I will find a way to move on, to find strength for myself and my daughter, and one day, I will wake up and be able to enjoy my life again. I know this. But for now, this hurts like hell, and it sucks. I'm sorry I don't have a more elegant turn-of-phrase for you, but as anyone who has been in my position can tell you, that pretty much is the simplest and most accurate way to describe this. I feel like my heart has been eviscerated, then put back in, and expected by the world at large to function the way it did before. I'm supposed to be over this because he is. I'm supposed to forget the last 11 years ever happened, be the good ex-wife and not let my emotions get in the way. Such bullshit.

Add to that the fact that Sarah's upward swing is now starting to decline. Her gums are starting to swell again, she is eating less. She is losing weight again, her clothes are starting not to fit. Her doctors want to start a new chemo, in addition to the old one. I don't even know what it's called. Would you judge me if I said I really didn't care, as long as it gave us more time? I have already lost everything I have worked for my entire life. I have lost my job, the career I spent my life building, the relationship and marriage I spent 11 years building, my relationship with my stepchildren, my dignity and self-respect. I have nothing left to show for my life except that little girl. Thing is, I would lose it all a hundred times if it meant I got to keep her.

So tomorrow, we start the new chemo with the name that eludes me, and which her wonderful doctors have tweaked to 4 days instead of 5 so that we won't have to come in on a Saturday, and they've also agreed to do it outpatient if I bring her every day. If it means Sarah will be happy, and she can swing and play T-ball in the yard, I will absolutely drive her to the hospital every day. There is no sense in buying more time if we can't enjoy it.

I am slowly but surely learning a new way of life. I am learning to be a person, an adult in my own right, because I don't know how to be that. I have been with this man since I was 21 years old, raising his children, being his wife. I have loved him all of my adult life. I don't know how not to love him. I know the girl I used to be before I met him, and I know the woman I have become with him. I don't know who I am apart from him, and I am learning. I am learning how to live solely for myself and my daughter, and how to love us both better. I am reading, watching tv programs, journaling, doing whatever I can to realize my own shortcomings, the places where I went wrong, if only to improve myself since it has been made clear to me on more than one occasion that my marriage is completely over. He thinks he can find happiness with his mistress. I am being left no choice but to leave him to it. It isn't like me to just give up, especially to an unworthy opponent, but in this case, I think it's a lesson I need to learn. The art of letting go.

I have made a "me" list, of ways I want to improve, things I want for myself, things I want to do, and be and see. I have decided to do at least one nice thing for myself a month, get out of the house on my own once a month, whether it be dinner with a friend or even shopping on my own. I want to write more, pick up where I left off with that novel I started writing awhile back. I want to craft and read, and play with my daughter in the yard, all of the things there was never time for while I was struggling to hold onto something that wasn't there. From the ashes of my marriage, I will rise. From the ashes of this cancer, my daughter and I will both rise, better, stronger, alive. And if we are in our final days, then I am determined to make them the best. I am determined to create memories that will last me until the end of my days. Life is for living, and I intend to live it. Now.

Little things....

Okay, so I know it's been awhile, but things have been so up in the air in our lives that having a minute to even form a coherent thought, much less put those thoughts out for the world to see and have them make any kind of sense is pretty damn near impossible. If you only knew, you would understand.

Sarah's life literally hung in the balance for awhile, and does still, I guess, although we are much more able to breathe a sigh of relief now than we were even just a few weeks ago. We are at the end of the road, where there are very few options left, and realistically, Sarah shouldn't be doing as well as she is. It's by the grace of God and the strength of the spirit He gave her that's the reason she's alive right now. There were some especially difficult days when the daily shots I had to be giving my incredibly brave daughter were not working and I had to seriously consider the possibility of having to plan a funeral. There were days before that when the daily shots were making her crazy, making her throw raging fits where she screamed at me that she didn't want to be with me, wanted me to go away, aggressively attacked me. Her gums swelled up so much from the cancer that they were surrounding her teeth, and she couldn't eat anything. She lost so much weight her clothes were literally falling off of her body. Even the clothes from last year didn't fit. I had to buy baby food just to get her to eat, and thank God for my mom's bean dip, which brought her back to her normal weight with it's fatty deliciousness. If this damned cancer isn't going to take my baby one way, it will take her another, but what choice do we have? I will not give up on her.

Add to that the fact that my six year marriage is now ending for real. We have been separated for a year, I thought we were trying to work things out, but apparently, we're done. The finality of it is devastating. I did the best I could to make it work, and I needed to be able to tell her that when she asks. I needed to be able to tell myself that, and now I can. Sarah is taking it rather well for a five year old. I have tried my best to make it as easy as I can on her. I am holding on to my sanity in any way that I can.

I know this is all very vague, but I just don't have the energy to get into months' worth of details, nor do you have the kind of time to swim through all of that when it probably wouldn't make much sense anyway. Long story short, there's a lot of shit going on, none of it easy. How I have avoided the little white room with the padded walls is beyond me. I have had my days over it to be sure, and without a few key people in my life, The Essentials, I would not have made it through some of them. Y'all know who you are.

There are days where I think she may not survive this, days where I find myself on the outside looking in and my heart weeps to think that these are the "end days", that I may very well be right now, as we speak, living towards the end. Then, there are days where I think that she may actually survive this, that one day we will both wake up to find our happiness someplace different, someplace new, anywhere but here, stronger and wiser for our experience. To be able to rise from the ashes of this shitstorm, and get to walk away with my daughter in my arms would be more than I have any right to ask for. But it's also all I have left to hope for. Cancer has cost me my job, my career, "friends", family members, my marriage, my independence. I have nothing left except this little girl. I don't know what I will do if I lose her, too.

But the way things are looking right now, the future I envision may very well be a happy one after all. Sarah looks amazing, she seems to be feeling amazing, her hair is growing back, she is eating so much better now and putting on some of the weight she has lost. Her blood work is holding steady, she is fighting this demon and she is winning, at least for now. Much to the doctors' amazement, with the help of a TON of natural supplements, and oral chemo, her gums have reduced back down almost to normal, which her doctor said wouldn't happen unless the chemo started to control the cancer. There is much to be grateful for. This one thing alone is everything.

This is good news for today. We are literally living day by day now. Tomorrow may bring better news, worse news or more of the same. In the mean time, I am enjoying the time we have, I am spoiling the shit out of her while still trying to maintain some discipline, because if there is hope, I do need to teach her how to live in the real world where she will hear the word "No" on occasion. We bake cookies. I make pink pancakes every morning with peaches. She eats bean dip for the other two meals with Fritos, and I let her. She makes a mess in every room, and I let her do that, too. I am enjoying the now, because it may be all we have, and I want no regrets. I need to be able to say that I did everything that I could, that I was the best mother I could have been to this little girl.

So, this week, we went to Craig National Park in Brea and fed the duckies, for the first time that Sarah remembers. She had an amazing time playing with her friends and just being a normal five year old, except for the part where I damn near electrocuted us both trying to get her off the damn slide! I am no longer allowed to touch my daughter because the static electricity seems to like me and I keep inadvertently zapping her when we least expect it. But I digress. She fed the ducks. She rode her bike, she played on the swings, and the sound of her and her friend, Savannah's laughter as it carried on the breeze was the most amazing sound. These are things that many parents take for granted, but to a cancer patient, these are small miracles, and we never know how much they might cost us the next day. The smallest thing, like Sarah being able to brush her teeth with an actual toothbrush for the first time in two months? Not just doing it, BEING ABLE to do it. Most things that we do without thinking, most things that we hate doing or even find tedious become tiny miracles to someone who can't. They are even more miraculous when tinged with the thought that there may come a day when they never will again.

These are the dark thoughts that come to plague me, but they are real. To sugar coat them just to make you more comfortable would be an injustice. In order to create awareness, I can't sugar coat this. I do a fair share of that, believe me. To truly depict the reality of what these children have to go through would give you nightmares. But if I have given you even a taste of what it's like, made you think about childhood cancer in a way you never have before, then I have served my purpose.

Tomorrow, we are going to visit our cousins, and Sarah is excited. It fills my heart with unending joy to hear her running all over the house singing, "We're going to feed the duck-ies!" Or "We're going to see Sofi-a!" She is getting excited about her life, which means I can, as well. I can push out those dark thoughts and start to envision a better life of happiness and fulfillment and small miracles for both of us.

Birthright...

Just a quick update because poesy is beyond me at this point...

Yesterday, the nurses kept saying that we could possibly go home today, and while I told Sarah that we may not get to, she was still royally pissed when she woke up and not only do we not get to go home, but we have a roommate!

Yeah, she wasn't having it. She starts crying, yelling that she doesn't want a roommate, and to get her out of here! I explain that this isn't nice, that we need to be gracious and understanding. Yeah, imagine my surprise when she so didn't care! lol

Imagine my greater surprise when the roommate's mother tells the CA, "Believe me, we feel the exact same way."

She complained about not being near the window (we have had bed 2 since we got here last Sunday, and they generally don't take Bed 2 away from the patient who had it first),she complained because the dresser wouldn't move, she gave the CA a lecture about how, with everything we have to go through, the least they could do is give us private rooms, and that they should have thought of that when they built the hospital. Um...this hospital is a very nice one, and it may have escaped her notice, but I don't think I have ever read HILTON on the side of the building! (Besides, the new tower is set to open in the spring, where every patient will have their own room!)

She engaged me shortly after in a conversation, and my momma having raised me properly, I was as cordial and polite as I could have been, despite the fact that I kinda didn't want to talk to her after what I heard in her conversation with the staff! These people, after three years, have become my friends, some of them have become like family. I don't stomach it well when they are treated like "the help". But still, as I said, my momma raised me right, and I decided to give her the benefit of the doubt. After all, I don't necessarily make the best first impression, people often mistake my initial shyness for haughtiness, and when I do start talking, not everyone appreciates my propensity for calling a spade a damn shovel. Plus, this isn't exactly an easy thing to go through, and everyone reacts in their own way.

So I talked to her, and what I found was this. They are relatively new to this, and have had it fairly easy. She seems to be fighting her fate. Being a cancer mom is kind of a birthright, a destiny. The more you fight it, the harder your life becomes. If you accept it, assume it, rock it the best way you can, even revel and take pride in it (what better badge of honor and valor could there be?) then it sort of ceases to take over your life and becomes a part of who you are. Is it always easy? Is it easy to come to a place of peace when your child is suffering on a daily basis? Hell no! Those of you who read this blog regularly know some of what I myself have struggled with, those of you who know me personally know even more. Did I want this? Heeeeeeeelllll no! But Jesus didn't want to be Savior, either. With greatness comes sacrifice. And the more you fight, the harder it is.

I never understood before now why so many people commended me, lauded me as an inspiration, a paragon of motherhood (toot toot! ha ha) when I was just doing my job. I always thought that any mother would do the same for her child and gladly. I never really saw myself as being any stronger than any of the other amazing women I have met through this experience, and because of the difficulties Sarah and I have faced, I often have seen myself as a failure. But I guess from the outside looking in, the fact that I have never seen any other choice but to accept our fate, accept our fight, and do exactly what I needed to do to get her through this as quickly and painlessly as possible seems commendable because the choice is not so easily made for everyone. Not that the result isn't the same, but acceptance isn't as easily come by for some.

 My only goal has been to keep her as comfortable and as happy as I possibly can so that I can, from beginning to middle (I refuse to say end! In my mind, in my heart and my soul of souls, this can only end one way. My daughter is stubborn as hell, and she will use that to get through this! This will not be the end of her story by a long shot!) and I will continue to do so. I will continue to fight alongside my daughter. I accept my birthright. I will try to help my fellow cancer moms accept theirs if they haven't already. I will rejoice in the successes of all of our children, because we are a family. We will slay this dragon called Cancer and we will dance over its ashes. Not only will we survive, we will live.

Procedure Day

They took her in an hour early! She whined a little, but she went down like a champ! I'm so proud of my brave girl! One of Sarah's doctors came in and explained what we're looking for, and what could possibly happen next. Even if we see good results in the marrow, that thing on her back could be a cluster of leukemia cells and that could still be considered a relapse, so they still want to biopsy that. Antibiotics should have kicked in by now, and it really doesn't look any better, so it's doubtful that it's something small, like a clogged pore. I hate this part, the being without my daughter part, the waiting and seeing part. I can't protect her here, although I know she is in the best possible hands, at the best hospital, with the best doctors, nurses, the best child life specialist who vowed to stay with her as much for my peace of mind as for Sarah's, and the best stealth ninja anesthesiologist who gives Sarah the meds so quickly and without ceremony that she doesn't even notice! Still, the hardest thing in the world is to leave her behind, to turn away from her and walk down the hall by myself to wait in her room.

So, the thing on her back. Basically what they're telling me is that even if the bone marrow looks good, that thing on her back, could be a chloroma, also called a myeloid sarcoma, a cluster of leukemia cells. So either the bone marrow or the chloroma or both could show signs of relapse. Even if the marrow looks good, the chloroma could be a sign in and of itself that the treatment was unsuccessful. The doctor said that either way she is looking into the Interferon, to be given alone since they already gave her all of the donor cells that they had, and she just got them recently. She said there is encouraging data (that was the term she used), so I guess if we are not granted a miracle today, then there is still hope. Where there is life, there is hope. I read that in a book recently, I think it was Anne of the Island ( I know they are Youth fiction, but they are still my all time favorites, and there is something so simplistic and beautiful about the writing that it calms me, takes me back to when I was twelve and life was simple). And there is so much life left in this little girl. She is weakened, yes, but there is so much more she wants to see and do, the world at five years old is just starting to open up to her, and she means to live.

Her procedure is over now, and she is still sleeping off the last of the ketamine. It was a long night for her, and no doubt she is tired. I am trying not to think. About anything. I am going to have a sandwich. Maybe string Sarah's Beads of Courage, catch up on Once Upon a Time, read some more about Anne for the millionth time, and when the news comes, good or bad, well, then it comes. We will be ready.