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.
Friday, December 7, 2012
Tuesday, December 4, 2012
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.
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.
Fear and Faith
It has been a while since I posted last, and there is good reason. This little lady keeps me on my toes! As soon as I clean one room, she has destroyed another, and getting her back into her normal at-home routine was more difficult this time around. In other words, she threw a raging fit any time I asked her to do anything, and regressed big time, where she insisted on wearing pull-ups all the time and wouldn't tell me when she had to go. The mylotarg really wiped her out, to where she would just lay there some days and watch tv. Anyone who knows Sarah, has ever met Sarah in their lifetime, knows that this is not like her, at all. Sarah is very active and always going even when an adult would be laid out flat, and the television is background noise for her. It's constantly on (I know, but save your lectures. I'm aware of the evils of television as well as my carbon footprint.) but it's mainly to keep her company while I do my chores throughout the day. She will rarely sit through an entire program. Now that I have her almost fully trained again, where she can get through a day without a single tantrum, I have actually gotten her to turn it off while she's playing, but for her to sit there on the couch and watch program after program? She had to have been feeling awful. Her appointments were twice a week in OPI so that she could be seen by a doctor every time, and so that it was more convenient if she needed anything, which she did. EVERY.SINGLE.TIME.
She needed platelets nearly every visit, sometimes blood, too, and many overtime hours were worked because of us. Dr. Horvath gave her some supplements, all natural, to try to restore overall health, which helped to give her some energy and even opened up her appetite a little. Still, I have spent the last month or so struggling with my fear. I have never seen my daughter this way in her life. She has always been so vibrant, so full of life, and I can feel her waning. She's tired, physically and emotionally exhausted. I took her out of PT because I didn't want to waste time on something she hates doing. Her energy was at 75% to begin with. If she was going to expend energy, I wanted it to be on something she actually enjoyed. She's been so tired, so drained, that I no longer recognize my child sometimes. I know that I'm supposed to have faith, that I'm supposed to leave it up to God, and I have. But I'm a realist. I believe that God does what He wants, and there's not a thing any of us can do about it. If God wants her, He will take her, case closed. And I know I'm supposed to be okay with that. That I'm supposed to find a way to be okay with that, but how do I let go of my child? This isn't some so-called friend that wants to act dumb, or some parking ticket I can't afford. This is my daughter. How do I just say, "Oh, well, it's up to God now"? It feels too much like giving up, and I know that's wrong, which is why it's a struggle. If I was absolutely sure of what to feel one way or another, it would be easy.
And no one ever said that being faithful was easy. Never have I read anywhere that anyone who was ever tested by God wasn't scared. It only says that in the end, they believed that God would deliver them, that in they end, they followed what God told them to do. And I fully intend to do the same, but for some reason, it weirds people out that I'm afraid, to the point where they keep telling me I need to be faithful, that faith and fear don't go together. I don't necessarily agree. I think that fear is sort of a crossroads, and you can either choose to be faithful and believe that somehow things will all work out, whether you believe in a higher power or not, or you can choose to wallow and whine and be counterproductive and annoy the shit out of everyone around you. I don't think I need to tell you which path I choose, every single day, but I have walked a path of fear for a little while to get there. I mean, think about it. If I said I didn't fear for my daughter, especially at this point where we are running out of options, where she is dropping weight so dramatically that last year's clothes don't fit, you would either think me in denial, or cold and unfeeling. And I am not the type of person who suppresses anything. I need to ride the wave of fear in order to get over it. I spent an entire day crying in front of Sarah's dresser, because the sight of a dresser full of clothes that were falling off of her was just too sad for me to bear. And who do you talk to about something like that? So I rode it out alone, (although I did talk to another cancer mom about it the next day) and then I was able to deal with it, and move on.
I always settle in a place of faith, it's just not always a smooth, direct path. Especially when difficulties come up every day that make me wonder if she really will come through the other end of this alive. I know that one way or another, it's going to be okay, someday, but in the meantime, it's scary as hell staring into the face of the demon that aims to take your child from you, when she's all you have left.
Tomorrow is particularly difficult day, and tonight for me is filled with fear. The nurse practitioner explained that they are going to do a bone marrow aspirate and biopsy (they are taking some bone marrow out to test it) in order to see if the mylotarg she's been on has been working to control her leukemia, or if it hasn't had the desired effect. If tomorrow they find that she has less than 20% blasts in her bone marrow, they will consider this to mean that the mylotarg has been successful in controlling her leukemia, and I am unsure if they will continue with it or not. If, however, she has more than 20% blasts, that's considered a relapse, meaning the mylotarg was unsuccessful, and that we will have to try something else if we want to continue treatment, which, of course, we do. She is a little weaker now than she was, which scares me, but she is still very much present. I couldn't see discontinuing her treatment now.
If the mylotarg wasn't successful, her doctor wants to try a drug called Interferon, which they use widely in the US in adults, but there is no data for it's use in children, except for one study from one center in China. So basically, we would be spit-balling to see if this would work or not, with no data to guide our decision or predict an outcome, way off the beaten path with a map we made ourselves. SCARY AS SHIT.
Ironically, although tomorrow will be a very trying day, especially on no sleep, tonight will be even worse. I don't know what tomorrow's biopsy will show, and that is scarier than knowing whether it worked or it didn't. There is a lot riding on this, after all. And I know, I need to trust. I need to have faith. I need to believe the way that Sarah believes in me when I tell her that everything is going to turn out just fine. I mean, shit, while I'm a nervous wreck over here pouring out my heart to strangers to keep from going insane, my daughter is eating a taco and laughing at a short film on water birds that happens to be one of the special features on her Rescuers DVD, fully aware of the fact that she has a procedure tomorrow. She's not afraid, because to her, as far as she knows, it's just another procedure to add to the list of many, another bead on her Beads of Courage string, another annoying task that gets in the way of her busy playtime schedule. She knows that after that, she'll play for awhile, and the biggest thing she's worrying about right now is that we didn't bring anything pretty to wear to the "Christmas party" they are throwing in the playroom tomorrow evening. I need to take a lesson from my child. She is faced with all of this, and it's all normal to her, routine, and while she has been fretting over it a little more recently, it is still not nearly as much as full grown adult would. All of these kids are so amazing. For everything they can't do, there is so much more that they can. God knew what he was doing when he made this little girl as strong and as stubborn and as sassy as she is. God knew what he was doing when he made her so sweet and loveable that even strangers love her and follow her progress, that she has people who don't pray praying on her behalf. I can have faith in my daughter that God made her strong enough to withstand more than most adults could already, and she isn't done fighting yet. I can have faith in Sarah. I can believe in Sarah. And I do.
She needed platelets nearly every visit, sometimes blood, too, and many overtime hours were worked because of us. Dr. Horvath gave her some supplements, all natural, to try to restore overall health, which helped to give her some energy and even opened up her appetite a little. Still, I have spent the last month or so struggling with my fear. I have never seen my daughter this way in her life. She has always been so vibrant, so full of life, and I can feel her waning. She's tired, physically and emotionally exhausted. I took her out of PT because I didn't want to waste time on something she hates doing. Her energy was at 75% to begin with. If she was going to expend energy, I wanted it to be on something she actually enjoyed. She's been so tired, so drained, that I no longer recognize my child sometimes. I know that I'm supposed to have faith, that I'm supposed to leave it up to God, and I have. But I'm a realist. I believe that God does what He wants, and there's not a thing any of us can do about it. If God wants her, He will take her, case closed. And I know I'm supposed to be okay with that. That I'm supposed to find a way to be okay with that, but how do I let go of my child? This isn't some so-called friend that wants to act dumb, or some parking ticket I can't afford. This is my daughter. How do I just say, "Oh, well, it's up to God now"? It feels too much like giving up, and I know that's wrong, which is why it's a struggle. If I was absolutely sure of what to feel one way or another, it would be easy.
And no one ever said that being faithful was easy. Never have I read anywhere that anyone who was ever tested by God wasn't scared. It only says that in the end, they believed that God would deliver them, that in they end, they followed what God told them to do. And I fully intend to do the same, but for some reason, it weirds people out that I'm afraid, to the point where they keep telling me I need to be faithful, that faith and fear don't go together. I don't necessarily agree. I think that fear is sort of a crossroads, and you can either choose to be faithful and believe that somehow things will all work out, whether you believe in a higher power or not, or you can choose to wallow and whine and be counterproductive and annoy the shit out of everyone around you. I don't think I need to tell you which path I choose, every single day, but I have walked a path of fear for a little while to get there. I mean, think about it. If I said I didn't fear for my daughter, especially at this point where we are running out of options, where she is dropping weight so dramatically that last year's clothes don't fit, you would either think me in denial, or cold and unfeeling. And I am not the type of person who suppresses anything. I need to ride the wave of fear in order to get over it. I spent an entire day crying in front of Sarah's dresser, because the sight of a dresser full of clothes that were falling off of her was just too sad for me to bear. And who do you talk to about something like that? So I rode it out alone, (although I did talk to another cancer mom about it the next day) and then I was able to deal with it, and move on.
I always settle in a place of faith, it's just not always a smooth, direct path. Especially when difficulties come up every day that make me wonder if she really will come through the other end of this alive. I know that one way or another, it's going to be okay, someday, but in the meantime, it's scary as hell staring into the face of the demon that aims to take your child from you, when she's all you have left.
Tomorrow is particularly difficult day, and tonight for me is filled with fear. The nurse practitioner explained that they are going to do a bone marrow aspirate and biopsy (they are taking some bone marrow out to test it) in order to see if the mylotarg she's been on has been working to control her leukemia, or if it hasn't had the desired effect. If tomorrow they find that she has less than 20% blasts in her bone marrow, they will consider this to mean that the mylotarg has been successful in controlling her leukemia, and I am unsure if they will continue with it or not. If, however, she has more than 20% blasts, that's considered a relapse, meaning the mylotarg was unsuccessful, and that we will have to try something else if we want to continue treatment, which, of course, we do. She is a little weaker now than she was, which scares me, but she is still very much present. I couldn't see discontinuing her treatment now.
If the mylotarg wasn't successful, her doctor wants to try a drug called Interferon, which they use widely in the US in adults, but there is no data for it's use in children, except for one study from one center in China. So basically, we would be spit-balling to see if this would work or not, with no data to guide our decision or predict an outcome, way off the beaten path with a map we made ourselves. SCARY AS SHIT.
Ironically, although tomorrow will be a very trying day, especially on no sleep, tonight will be even worse. I don't know what tomorrow's biopsy will show, and that is scarier than knowing whether it worked or it didn't. There is a lot riding on this, after all. And I know, I need to trust. I need to have faith. I need to believe the way that Sarah believes in me when I tell her that everything is going to turn out just fine. I mean, shit, while I'm a nervous wreck over here pouring out my heart to strangers to keep from going insane, my daughter is eating a taco and laughing at a short film on water birds that happens to be one of the special features on her Rescuers DVD, fully aware of the fact that she has a procedure tomorrow. She's not afraid, because to her, as far as she knows, it's just another procedure to add to the list of many, another bead on her Beads of Courage string, another annoying task that gets in the way of her busy playtime schedule. She knows that after that, she'll play for awhile, and the biggest thing she's worrying about right now is that we didn't bring anything pretty to wear to the "Christmas party" they are throwing in the playroom tomorrow evening. I need to take a lesson from my child. She is faced with all of this, and it's all normal to her, routine, and while she has been fretting over it a little more recently, it is still not nearly as much as full grown adult would. All of these kids are so amazing. For everything they can't do, there is so much more that they can. God knew what he was doing when he made this little girl as strong and as stubborn and as sassy as she is. God knew what he was doing when he made her so sweet and loveable that even strangers love her and follow her progress, that she has people who don't pray praying on her behalf. I can have faith in my daughter that God made her strong enough to withstand more than most adults could already, and she isn't done fighting yet. I can have faith in Sarah. I can believe in Sarah. And I do.
Friday, November 2, 2012
Hospital Halloween, and other randomness...
These past few days have been a whirlwind, one thing after another, and I have scarcely had time to answer my phone, let alone blog! So, here it is, my faithful followers, your update.
Yesterday was Halloween, and while Sarah and I were sad to spend it in here, CHOC does it up big, and she had a blast! She got to go trick or treating with her "boyfriend" Julian, and that made her extremely happy. No one knowing what she was supposed to be did not make her happy, but that is the price we pay for being literary in the digital age where no one reads anymore. She had no problem informing everyone who told her what a pretty princess she was that she was not a princess, but Pinkalicious! They took the kids on a walk around the entire basement tunnel, which runs the length of the hospital, naturally, and there were tables along the whole way. Sarah got three huge bags full! Candy, toys, pencils, there is no way we will be able to consume that much candy in a year! Usually, Mike and I eat the candy together, so it's not so bad. This year, let's just say don't be surprised if I gain a hundred pounds.
The minute we got back (and I mean just that--the VERY minute we walked through the door) the nurse informs us that we are now on lock down, because she came back positive for c.dif. C.dif is short for the longer name of a bacteria I can't pronounce. I could google it for you, but I'm pretty sure you don't care, and if you do, then you can google it yourself. C.dif resides in the colon, and everyone has it, but it usually doesn't make you sick, because the average person has plenty of white cells to keep that bad boy in check. These sweet little angels? Not so much. The germs in their own bodies are making them sick because they have nothing to fight with. AND this bacteria is resistant to alcohol gel. So this means lots of hand washing (duh) and we can't leave the room. Yay for having some sort of answer as to where her fever is coming from after two weeks (maybe), but boo for baby girl and her poor little bottom.
Which leads me to the question on everyone's mind--when do we get to go home? See, that's the thing. With the AFND (Allow For Natural Death), we are allowed a certain amount of leeway. With the AFND, I could have reasonably taken her home, because we are not being aggressive anymore, we're just kind of letting nature take it's course. But that's not where we are, or why the doctor suggested the AFND. Sarah is still very much alive, and LITERALLY kicking, (we are working on it, but she is so bored and frustrated, and she's four) so we are not at the point where we are ready to just push her off on an ice floe just yet. She is still here. The doctor suggested we have an AFND to discuss which measures we wanted and didn't want in case we found ourselves in a position where she was slipping away. If we found ourselves in that place, he didn't want us having to make very difficult decisions at an already difficult time. He wanted us to have time to decide, while our heads were clear. I appreciate that, so much. But it didn't go exactly as intended.
I asked that the AFND be removed because it seemed to me that when people saw it, especially people who didn't know Sarah, it gave off a certain impression of her and the situation. Allow For Natural Death is a scary phrase. Essentially, it has the connotation (although this is not the intention, one can't help how the brain associates certain things) that we have given up, that we are done trying and that we are ready to let her go. We are SO NOT in that place. She is SO NOT in that place!
I found myself having a theological discussion with my daughter that I would expect to have with an older child, it is amazing how smart she is! She says she is afraid to believe in God, because she thinks if she believes in God and in Heaven, then that means she has to go there now, and she wants to live forever and ever! :( She is only four, but she knows what she wants, and she doesn't want to die. She is afraid that if she prays, God will not hear her, because in her eyes, so far he hasn't. She's still sick. She's still stuck in this "trap" as she calls it. The Cancer Monster still looms in the shadows, ready to destroy any peace she may find. She is so amazingly bright, but she is only a baby. She cannot see how many people are also praying, how many small miracles God has already granted, beginning with her very entrance into this world, how many people have professed that they have uttered prayers on her behalf when they do not consider themselves "the praying kind". I try to explain the nature of God, that everyone has a purpose, and her response is always the same: "I'm scared. I don't understand."
And why should she? She can believe in monsters, in fairies, in Santa Claus, the Easter Bunny, because those things are consistent, and they make a logical sort of sense. There are rules in their world. God has rules, but even those who don't follow can receive blessings unbidden, and where is the logic in that? How do I explain to my four year old the nature of a world that just does not make any sense?
I tell her simply that it isn't fair, that it doesn't make sense, but that we must believe anyway in order to find miracles. I try instead to explain the nature of faith. Faith is all we have left, all we have to cling to in a world that just doesn't make sense. As maddening and as trite as it sounds, it's the only answer we have.
The doctors have decided to go day by day, and decide based on how she does when we can go home. The problem is this. Without the AFND, and since we have decided to fight, we are treating this aggressively just like a brand new diagnosis. So if we are following protocol, and protocol dictates that she has to stay for 48 hours past the last fever, then we need to stay until she stops having fevers. Herein lies the problem. They cannot pinpoint an exact source for her fever, although the c.dif may be a cause, we just can't be sure, and it is more likely a neutropenic fever brought on by low white cell counts. It takes an average of 42 days to recover white cells after the last dose of Mylotarg, and we are giving a dose every 14 days. So theoretically, she is going to be neutropenic for a long time, and if it's the neutropenia causing the fever, and we are following protocol, we could be in the hospital forever. So where do we draw the line? No one really knows, so we are back to waiting and seeing.
Sarah hates it, but she is such a great kid, that she makes the best of things. She does "the Sarah" in the narrow space between her bed and my cot. She asks for her creature comforts from home. We order new toys on the internet when I can afford them, and I politely ignore everyone who has anything to say about it, because my daughter is amazing and deserves every luxury I can afford to give her. The packages she receives in the mail tell me that I am not alone in feeling this way, and we are so grateful for each and every one because they make her so, so happy! They give her renewed strength to fight the good fight, and fight we shall until there is no fight left.
Yesterday was Halloween, and while Sarah and I were sad to spend it in here, CHOC does it up big, and she had a blast! She got to go trick or treating with her "boyfriend" Julian, and that made her extremely happy. No one knowing what she was supposed to be did not make her happy, but that is the price we pay for being literary in the digital age where no one reads anymore. She had no problem informing everyone who told her what a pretty princess she was that she was not a princess, but Pinkalicious! They took the kids on a walk around the entire basement tunnel, which runs the length of the hospital, naturally, and there were tables along the whole way. Sarah got three huge bags full! Candy, toys, pencils, there is no way we will be able to consume that much candy in a year! Usually, Mike and I eat the candy together, so it's not so bad. This year, let's just say don't be surprised if I gain a hundred pounds.
The minute we got back (and I mean just that--the VERY minute we walked through the door) the nurse informs us that we are now on lock down, because she came back positive for c.dif. C.dif is short for the longer name of a bacteria I can't pronounce. I could google it for you, but I'm pretty sure you don't care, and if you do, then you can google it yourself. C.dif resides in the colon, and everyone has it, but it usually doesn't make you sick, because the average person has plenty of white cells to keep that bad boy in check. These sweet little angels? Not so much. The germs in their own bodies are making them sick because they have nothing to fight with. AND this bacteria is resistant to alcohol gel. So this means lots of hand washing (duh) and we can't leave the room. Yay for having some sort of answer as to where her fever is coming from after two weeks (maybe), but boo for baby girl and her poor little bottom.
Which leads me to the question on everyone's mind--when do we get to go home? See, that's the thing. With the AFND (Allow For Natural Death), we are allowed a certain amount of leeway. With the AFND, I could have reasonably taken her home, because we are not being aggressive anymore, we're just kind of letting nature take it's course. But that's not where we are, or why the doctor suggested the AFND. Sarah is still very much alive, and LITERALLY kicking, (we are working on it, but she is so bored and frustrated, and she's four) so we are not at the point where we are ready to just push her off on an ice floe just yet. She is still here. The doctor suggested we have an AFND to discuss which measures we wanted and didn't want in case we found ourselves in a position where she was slipping away. If we found ourselves in that place, he didn't want us having to make very difficult decisions at an already difficult time. He wanted us to have time to decide, while our heads were clear. I appreciate that, so much. But it didn't go exactly as intended.
I asked that the AFND be removed because it seemed to me that when people saw it, especially people who didn't know Sarah, it gave off a certain impression of her and the situation. Allow For Natural Death is a scary phrase. Essentially, it has the connotation (although this is not the intention, one can't help how the brain associates certain things) that we have given up, that we are done trying and that we are ready to let her go. We are SO NOT in that place. She is SO NOT in that place!
I found myself having a theological discussion with my daughter that I would expect to have with an older child, it is amazing how smart she is! She says she is afraid to believe in God, because she thinks if she believes in God and in Heaven, then that means she has to go there now, and she wants to live forever and ever! :( She is only four, but she knows what she wants, and she doesn't want to die. She is afraid that if she prays, God will not hear her, because in her eyes, so far he hasn't. She's still sick. She's still stuck in this "trap" as she calls it. The Cancer Monster still looms in the shadows, ready to destroy any peace she may find. She is so amazingly bright, but she is only a baby. She cannot see how many people are also praying, how many small miracles God has already granted, beginning with her very entrance into this world, how many people have professed that they have uttered prayers on her behalf when they do not consider themselves "the praying kind". I try to explain the nature of God, that everyone has a purpose, and her response is always the same: "I'm scared. I don't understand."
And why should she? She can believe in monsters, in fairies, in Santa Claus, the Easter Bunny, because those things are consistent, and they make a logical sort of sense. There are rules in their world. God has rules, but even those who don't follow can receive blessings unbidden, and where is the logic in that? How do I explain to my four year old the nature of a world that just does not make any sense?
I tell her simply that it isn't fair, that it doesn't make sense, but that we must believe anyway in order to find miracles. I try instead to explain the nature of faith. Faith is all we have left, all we have to cling to in a world that just doesn't make sense. As maddening and as trite as it sounds, it's the only answer we have.
The doctors have decided to go day by day, and decide based on how she does when we can go home. The problem is this. Without the AFND, and since we have decided to fight, we are treating this aggressively just like a brand new diagnosis. So if we are following protocol, and protocol dictates that she has to stay for 48 hours past the last fever, then we need to stay until she stops having fevers. Herein lies the problem. They cannot pinpoint an exact source for her fever, although the c.dif may be a cause, we just can't be sure, and it is more likely a neutropenic fever brought on by low white cell counts. It takes an average of 42 days to recover white cells after the last dose of Mylotarg, and we are giving a dose every 14 days. So theoretically, she is going to be neutropenic for a long time, and if it's the neutropenia causing the fever, and we are following protocol, we could be in the hospital forever. So where do we draw the line? No one really knows, so we are back to waiting and seeing.
Sarah hates it, but she is such a great kid, that she makes the best of things. She does "the Sarah" in the narrow space between her bed and my cot. She asks for her creature comforts from home. We order new toys on the internet when I can afford them, and I politely ignore everyone who has anything to say about it, because my daughter is amazing and deserves every luxury I can afford to give her. The packages she receives in the mail tell me that I am not alone in feeling this way, and we are so grateful for each and every one because they make her so, so happy! They give her renewed strength to fight the good fight, and fight we shall until there is no fight left.
Thursday, October 25, 2012
We're baaaaaack!
I know...I know...several of you have commented that you have poring over the blog ravenously looking for any information, and I have let down my adoring fans by falling off the map! (Ha ha) But seriously, it hasn't been the smoothest ride. You'll forgive me when I tell you why I haven't posted in awhile, or why I haven't even plugged in the laptop since the last time we were inpatient!
So, as the four of you who read this may already know, at the end of August, right before (and I do mean RIGHT BEFORE) Sarah's Grant's Wishes trip to Disneyland, we got some bad news, that Sarah had relapsed, and they wanted her to come in right away. I convinced them to wait until after the trip, and literally the following Monday, we were inpatient, and hopeful that some more chemo and some extra cells would do the trick. Long story short, it didn't. We went through five days of chemo, and the horrible side effects that go along with it, then DLI (Donor Lymphocyte Infusion), which is a fancy way of saying, "They gave her more donor cells", and then the blasts started showing up in her peripheral blood. Basically speaking, her cancer is back, and now it's pissed off. The doctor gave me the devastating news that there is not much else we can do, we are at the end of the line, pretty much out of options as far as protocol goes. Kara held me as I cried, really let go for the first time in three years. I used to be the world's biggest cry baby. But during the past three years in crisis mode, I think I can count the number of tears I've shed. I don't allow myself the good hearty cry anymore. I probably should, but I figure if Sarah doesn't feel sorry for herself, what right do I have?
So, we discussed our options, I cried my eyes out to the therapist and the social worker, we decided to keep fighting, and to try this drug they had to get special permission for called Mylotarg. So far, she has gotten two doses, this Friday will be her third, and everyone was amazed at how well she's been doing, until she spiked a fever, and now we're back in the hospital.
So there's the recap. At home, it has been CRAZY, in more ways than one. Not only did I have a world of crap to put away as usual, but my mom had the house deep cleaned before we got home, and everything was put back haphazardly, (as in, 100 year old soy sauce in the forefront of the fridge, milk in the back, behind a thousand other bottles...wtf?) so I had a lot to do in the house, getting things back in order. My only saving grace was that everything was already clean, just not where it needed to be. That, and I decided since I was reorganizing anyway, I might as well clear out Sarah's toys to make way for her birthday and Christmas, and really, to make room for the load of crap she brought home from the hospital because our house is full to bursting!
Add to that the fact that Sarah's sleep schedule (and consequently, mine) is completely upside down, and that unbeknownst to me, because I didn't get the info until two weeks later on the side effects of Mylotarg, Sarah is experiencing anxiety and depression as a result, and I thought she was making things up to avoid having to go to sleep, because my child is happy-go-lucky most of the time. My child is NEVER inconsolable, and she worries about nothing, even when she should. I force myself to put on a brave face for her sake, and I never tell her when I'm scared for her. I simply explain as best I can in language she can understand what is going to happen in the immediate future, and I help her cope with the aftermath. So, of course, I thought she was making things up when it was three in the morning and she would tell me she was scared, or worried, but couldn't exactly tell me why. Then I get the info about the side effects, and I feel like crap, because I've been yelling at her for two weeks!
Then, there is the emotional aspect of things. I have been having a really hard time, not just with the obvious, day to day things. This is the first time I have really had to deal (or really allowed myself to deal) with the really hard issues. I had to decide whether or not to continue treatment with my daughter, or let her go. How do you make that kind of a decision, especially with a child as bright and vivacious as Sarah? We filled out an AFND form. AFND stands for Allow For Natural DEATH. I had to, line by line, go down a list and think about what I want and don't want them to do to try to save her life from now on. And with each line, I have to imagine my baby jolted by the paddles of defibrillator, my baby unconscious with a giant tube down her throat and covering most of her tiny face, my baby lying there, taking her last breaths. I have to imagine a world without my baby in it. I now clean her room, while she destroys the den, and imagine what it would be like if she never came in behind me again to make a mess. What it would be like if the Lalaloopsies were forever still, if the framed pictures of Sarah on the wall were the only way I could ever see her face again?
I struggle with these thoughts on a daily basis, and I found myself for the first time in three years, since we first got her diagnosis, parenting out of fear. Every time Sarah whined or cried, every time she made a mountain out of a molehill, instead of comforting her as I should have, I laid into her like a drill sergeant. I basically told her to suck it up, and when even my mother looked at me with this, what the hell is wrong with you? look and told me, "She's sick, Adriana," I saw myself for the first time in that moment. And I realized then what I was doing. I don't want her to be sick. If she is going to make it through this, she has to be strong. She has to be tough, I can't let her give up. I need her to fight, even if it's just with me, I need her to fight, because I need her here. I broke down, as I am wont to do randomly now that the floodgates have opened, and I apologized to her. I told her, as I never have before, that I'm scared, too. That I don't know what's going to happen, but that whatever it is, we are going to get through it together. And for the first time in all those weeks, I saw relief on her little face. I was inadvertently making the problem worse with my own fear, in trying to put on a brave face, I was actually making her more afraid. I realized that she can see me better than I think she can. I forgot something that I have known since childhood. Sometimes, it's okay to break down. Sometimes, it's okay to be afraid, and to say so. It's even okay to cry, as long as that's not all you do.
My "brave face" was making her feel alone. I should have known that. I have been there myself, and I even think that "brave face" has mutilated my marriage. I had to re-learn what I already knew from experience, and had forgotten. She doesn't need me to save her all the time. She is bright enough to know that there are some things even Mommy can't fix. She needed me to join her. She needed to know that I was with her, 100%.
We are back in the hospital, but things have been better between us since that night. I know that her anxiety is not a contrivance, but a side effect, mixed in with some natural fear and sadness of her own. Yes, it is my job to condition her, to train her, to prepare her for the real world, especially if she is lucky enough to get to stay in it, but that is only part of my job description. The most important part of my job is to love her. Just to love her, whether or not she makes sense, whatever the rest of the world thinks about the fact that I have slept in her room every night since that night, even when I didn't need to, that I have given her chocolate bars before dinner, that I have bought her McDonald's four times a week because it's all I could get her to eat. Medicine is running it's course. It is love and grace that will get her through this now. Love, grace and miracles both big and small. That's all we can hope for now.
So, as the four of you who read this may already know, at the end of August, right before (and I do mean RIGHT BEFORE) Sarah's Grant's Wishes trip to Disneyland, we got some bad news, that Sarah had relapsed, and they wanted her to come in right away. I convinced them to wait until after the trip, and literally the following Monday, we were inpatient, and hopeful that some more chemo and some extra cells would do the trick. Long story short, it didn't. We went through five days of chemo, and the horrible side effects that go along with it, then DLI (Donor Lymphocyte Infusion), which is a fancy way of saying, "They gave her more donor cells", and then the blasts started showing up in her peripheral blood. Basically speaking, her cancer is back, and now it's pissed off. The doctor gave me the devastating news that there is not much else we can do, we are at the end of the line, pretty much out of options as far as protocol goes. Kara held me as I cried, really let go for the first time in three years. I used to be the world's biggest cry baby. But during the past three years in crisis mode, I think I can count the number of tears I've shed. I don't allow myself the good hearty cry anymore. I probably should, but I figure if Sarah doesn't feel sorry for herself, what right do I have?
So, we discussed our options, I cried my eyes out to the therapist and the social worker, we decided to keep fighting, and to try this drug they had to get special permission for called Mylotarg. So far, she has gotten two doses, this Friday will be her third, and everyone was amazed at how well she's been doing, until she spiked a fever, and now we're back in the hospital.
So there's the recap. At home, it has been CRAZY, in more ways than one. Not only did I have a world of crap to put away as usual, but my mom had the house deep cleaned before we got home, and everything was put back haphazardly, (as in, 100 year old soy sauce in the forefront of the fridge, milk in the back, behind a thousand other bottles...wtf?) so I had a lot to do in the house, getting things back in order. My only saving grace was that everything was already clean, just not where it needed to be. That, and I decided since I was reorganizing anyway, I might as well clear out Sarah's toys to make way for her birthday and Christmas, and really, to make room for the load of crap she brought home from the hospital because our house is full to bursting!
Add to that the fact that Sarah's sleep schedule (and consequently, mine) is completely upside down, and that unbeknownst to me, because I didn't get the info until two weeks later on the side effects of Mylotarg, Sarah is experiencing anxiety and depression as a result, and I thought she was making things up to avoid having to go to sleep, because my child is happy-go-lucky most of the time. My child is NEVER inconsolable, and she worries about nothing, even when she should. I force myself to put on a brave face for her sake, and I never tell her when I'm scared for her. I simply explain as best I can in language she can understand what is going to happen in the immediate future, and I help her cope with the aftermath. So, of course, I thought she was making things up when it was three in the morning and she would tell me she was scared, or worried, but couldn't exactly tell me why. Then I get the info about the side effects, and I feel like crap, because I've been yelling at her for two weeks!
Then, there is the emotional aspect of things. I have been having a really hard time, not just with the obvious, day to day things. This is the first time I have really had to deal (or really allowed myself to deal) with the really hard issues. I had to decide whether or not to continue treatment with my daughter, or let her go. How do you make that kind of a decision, especially with a child as bright and vivacious as Sarah? We filled out an AFND form. AFND stands for Allow For Natural DEATH. I had to, line by line, go down a list and think about what I want and don't want them to do to try to save her life from now on. And with each line, I have to imagine my baby jolted by the paddles of defibrillator, my baby unconscious with a giant tube down her throat and covering most of her tiny face, my baby lying there, taking her last breaths. I have to imagine a world without my baby in it. I now clean her room, while she destroys the den, and imagine what it would be like if she never came in behind me again to make a mess. What it would be like if the Lalaloopsies were forever still, if the framed pictures of Sarah on the wall were the only way I could ever see her face again?
I struggle with these thoughts on a daily basis, and I found myself for the first time in three years, since we first got her diagnosis, parenting out of fear. Every time Sarah whined or cried, every time she made a mountain out of a molehill, instead of comforting her as I should have, I laid into her like a drill sergeant. I basically told her to suck it up, and when even my mother looked at me with this, what the hell is wrong with you? look and told me, "She's sick, Adriana," I saw myself for the first time in that moment. And I realized then what I was doing. I don't want her to be sick. If she is going to make it through this, she has to be strong. She has to be tough, I can't let her give up. I need her to fight, even if it's just with me, I need her to fight, because I need her here. I broke down, as I am wont to do randomly now that the floodgates have opened, and I apologized to her. I told her, as I never have before, that I'm scared, too. That I don't know what's going to happen, but that whatever it is, we are going to get through it together. And for the first time in all those weeks, I saw relief on her little face. I was inadvertently making the problem worse with my own fear, in trying to put on a brave face, I was actually making her more afraid. I realized that she can see me better than I think she can. I forgot something that I have known since childhood. Sometimes, it's okay to break down. Sometimes, it's okay to be afraid, and to say so. It's even okay to cry, as long as that's not all you do.
My "brave face" was making her feel alone. I should have known that. I have been there myself, and I even think that "brave face" has mutilated my marriage. I had to re-learn what I already knew from experience, and had forgotten. She doesn't need me to save her all the time. She is bright enough to know that there are some things even Mommy can't fix. She needed me to join her. She needed to know that I was with her, 100%.
We are back in the hospital, but things have been better between us since that night. I know that her anxiety is not a contrivance, but a side effect, mixed in with some natural fear and sadness of her own. Yes, it is my job to condition her, to train her, to prepare her for the real world, especially if she is lucky enough to get to stay in it, but that is only part of my job description. The most important part of my job is to love her. Just to love her, whether or not she makes sense, whatever the rest of the world thinks about the fact that I have slept in her room every night since that night, even when I didn't need to, that I have given her chocolate bars before dinner, that I have bought her McDonald's four times a week because it's all I could get her to eat. Medicine is running it's course. It is love and grace that will get her through this now. Love, grace and miracles both big and small. That's all we can hope for now.
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 Target.com 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.
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 Target.com 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?
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?
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