Okay, so keep in mind the fact that this child did not go to bed til 5 am. Again. Add to that the fact that her five thousand machines for her fluids, antibiotics, TPN, pain meds and flushes all seem to beep off at random times that seem to be set within THIRTY FREAKING SECONDS of each other (so as soon as I can get the nurse to come fix it if I can't do it myself, and i have finally JUST settled myself back in, it starts beeping again). Add to that the fact that the parents next door seem to think it's appropriate to let the child next door bang loudly on the windowsill/wall that is RIGHT NEXT TO my head, and scream in a death-metal-like fashion. Add to that the other kid down the hall (or in the hall right outside our door, from what it sounds like) that has been wailing for over an hour.Now when I say wailing, I mean just that. I don't mean he's been crying, or screaming, I mean cheesy old-fashioned ghost story moaning and wailing. Someone needed to hand this kid some clanking chains. Now I understand that not everyone on this floor is undergoing the same thing, and every kid is different. I understand that my kid is a tough, stubborn little thing, and that even from her first immunizations as an infant, she never cried unless she was in actual pain; as soon as the needle was out of her skin, she stopped crying almost immediately. She whines a little bit more now, has more of a propensity for the dramatic now that she's older and coming even more into her amazing little personality, but I'm guessing that at least 50% of that kid's problem was drama. I have never in my experience here had them do anything to Sarah, nor heard tell from another parent of their child having to undergo anything that would take their kid more than 20 minutes from which to recover after it was over. And never have they done anything to Sarah or any other child that I have known here that took that long that the child would be screaming actively while it was happening. THEN add to that kid's wailing chorus the sweet background songs of pounding jack hammers from the construction literally twenty feet from my head, and you have the sweet bird song of my morning.
Now, contrary to the impression that I may give off here, since this is obviously the perfect forum for it, in real life I am not a complainer. While I will rise to the occasion if I must, I hate confrontation, I would rather endure than make waves. I have a long fuse, and I can handle quite a lot. But seriously??? Why does the universe not want me to sleep???
So, once again, I am saying "when" and trading sleep for a cup of hot coffee and a hot shower. Part of being a mom is sleep deprivation. Part of being a cancer mom is SEVERE sleep deprivation, apparently. And it is just imperfect timing that we happened to get a room right outside the nurses station that seems to be a non-stop party and that the new tower can't just arise instantly like a pop-up tent so that I can get some freaking shut-eye.
Okay, I'm done. Enough whining. See? Like I said. Twenty minutes. ;)
Wednesday, March 7, 2012
Tuesday, March 6, 2012
Le Sigh...
Okay, so I guess the quiet couple of days that we spent just waiting for counts to come back up were just the eye of the storm, because all hell has broken loose in this tiny little hospital room. Yesterday, Sarah needed platelets, so they transfused her, and they gave her "premeds" which just means that they give her either tylenol or Benadryl to keep her from having a negative reaction to the transfusion, and since she has had a negative reaction to antibiotics in just the last week, they decided to give her both, which made her sleep most of the day. A cup of very strong coffee was my very best friend, as Miss Boots didn't get tired and finally settle down until 5:00 this morning. AM, y'all. I am not kidding. This would not be ideal even if we were home, but I suppose in the last few months of being in the OICU, I have taken for granted the calm and the quiet that goes with having only a small handful of patients in the wing. And it probably doesn't help that the room we got has construction of the new tower right outside the window, or that it also happens to be conveniently located directly in front of the nurse's station, which may as well be Grand Central Station for all the noise they're making. I understand that most humans are diurnal, but still.
She spiked a fever from the neutropenia (meaning she has no neutrophils, or white cells) and the normal bacteria that usually resides in the body is starting to turn against her. She's getting a diaper rash, they have her on two antibiotics again because of the fever. She is complaining of stomach pain, and the doctors are concerned because one of the complications to watch out for at this stage in the game is an inflamed intestinal tract (they had a fancy name for it, but I'm lucky I remember MY name right now), so they ordered an ultrasound, and possibly a CT if they find something on the ultrasound. She is also not eating, so they are putting her back on TPN (IV nutrition) so that her body will stay nourished until she starts eating on her own again, although since she will be receiving all of her nutrition through her IV, her body will not feel hungry, so I should encourage her, but not really expect that she's going to eat much. She got blood today, which meant more premeds and more sleeping, but with construction and the Grand Central Nurse's Station, plus the foot traffic in the room every five minutes, I finally gave up on sleeping and opted for a cup of coffee instead. Ah, coffee. You're my only friend.
Through all of this, I have plenty to be concerned about, but for all of the medicine, I know she's in good hands. I pay attention, I educate myself and I know that the doctors and nurses are going out of their way to make sure she is more than taken care of, and there are nurse managers that even come in on a daily basis to ask if there are any problems or concerns, and how they can improve upon the service she is getting here. I know she is more than well-covered in that aspect. In the two and a half years that she has been coming here, I have only recently had an issue with one of the nurses, and she's new. No, what concerns me most at the moment is not the medicine. It's the fact that at this point in time, two weeks away from transplant, all of these complications could not only set her back health-wise, but they could also keep her from getting to go home before transplant, and I know she needs that break. I could use it, too, believe me, but I have the option of calling in reinforcements to come in and take over if I feel like I'm going stir crazy. She doesn't. She needs that break in between to see her home and her things, to be in a place that she feels safe.
Since she was re-diagnosed in early December, Sarah expresses a desire to go home at least once a day, but a short sniff and a whimper later, she is over it and laughing and playing happily with her dolls. Her bouts of homesickness are usually short-lived. But last night, be it from the fatigue from having slept all day and being transfused, or having been here for so long cooped up in these rooms, or just plain ol' sick and tired, my happy-go-lucky baby girl broke down. Like seriously broke down. I have never, in the two years that she has been undergoing treatment, throughout all of the horrible things she has withstood, I have never heard my child cry with such despondency. She cried as though she would never see her beloved home again. My heart ached for her, and all I could do was climb into bed with her and hold her, sing to her, reassure her that everything would be alright in the end.
In the end, as I held my daughter and sang softly in her ear, she joined me through her tears and we ended up singing "Three Little Birds" together. Then we ran through the rest of the repertoire that I reserve for times such as these, some Beatles songs, (Across the Universe, All You Need is Love, Dear Prudence, Hey, Jude, and I Wanna Hold Your Hand are among her favorites, since her infancy) and some other obscure songs that I have picked up along the way. The nurse reaccessed her port because of the fever, she played happily with her Lalaloopsies after I assured her that Tippy may miss her friends at home terribly but that she would see them all very soon, and that I would ask her Ama to bring her Knuffle Bunny and her Glo Worm, and she ended up nodding off somewhere around five in the morning.
I love that no matter how precocious my precious daughter is, she believes in me whole-heartedly, and believes in me in a way that I wish I believed in myself. She believes that I am omniscient and all-powerful, and when I tell her that it's going to be alright, she believes that it is. That is an awful lot of power for someone to have who has absolutely no idea what the fuck they're doing. But what mom really does? You do the best you can with what you have, you trust your instincts, you do what feels right to you. You trust that "every little thing is going to be alright", because in the end, it always is.
She spiked a fever from the neutropenia (meaning she has no neutrophils, or white cells) and the normal bacteria that usually resides in the body is starting to turn against her. She's getting a diaper rash, they have her on two antibiotics again because of the fever. She is complaining of stomach pain, and the doctors are concerned because one of the complications to watch out for at this stage in the game is an inflamed intestinal tract (they had a fancy name for it, but I'm lucky I remember MY name right now), so they ordered an ultrasound, and possibly a CT if they find something on the ultrasound. She is also not eating, so they are putting her back on TPN (IV nutrition) so that her body will stay nourished until she starts eating on her own again, although since she will be receiving all of her nutrition through her IV, her body will not feel hungry, so I should encourage her, but not really expect that she's going to eat much. She got blood today, which meant more premeds and more sleeping, but with construction and the Grand Central Nurse's Station, plus the foot traffic in the room every five minutes, I finally gave up on sleeping and opted for a cup of coffee instead. Ah, coffee. You're my only friend.
Through all of this, I have plenty to be concerned about, but for all of the medicine, I know she's in good hands. I pay attention, I educate myself and I know that the doctors and nurses are going out of their way to make sure she is more than taken care of, and there are nurse managers that even come in on a daily basis to ask if there are any problems or concerns, and how they can improve upon the service she is getting here. I know she is more than well-covered in that aspect. In the two and a half years that she has been coming here, I have only recently had an issue with one of the nurses, and she's new. No, what concerns me most at the moment is not the medicine. It's the fact that at this point in time, two weeks away from transplant, all of these complications could not only set her back health-wise, but they could also keep her from getting to go home before transplant, and I know she needs that break. I could use it, too, believe me, but I have the option of calling in reinforcements to come in and take over if I feel like I'm going stir crazy. She doesn't. She needs that break in between to see her home and her things, to be in a place that she feels safe.
Since she was re-diagnosed in early December, Sarah expresses a desire to go home at least once a day, but a short sniff and a whimper later, she is over it and laughing and playing happily with her dolls. Her bouts of homesickness are usually short-lived. But last night, be it from the fatigue from having slept all day and being transfused, or having been here for so long cooped up in these rooms, or just plain ol' sick and tired, my happy-go-lucky baby girl broke down. Like seriously broke down. I have never, in the two years that she has been undergoing treatment, throughout all of the horrible things she has withstood, I have never heard my child cry with such despondency. She cried as though she would never see her beloved home again. My heart ached for her, and all I could do was climb into bed with her and hold her, sing to her, reassure her that everything would be alright in the end.
In the end, as I held my daughter and sang softly in her ear, she joined me through her tears and we ended up singing "Three Little Birds" together. Then we ran through the rest of the repertoire that I reserve for times such as these, some Beatles songs, (Across the Universe, All You Need is Love, Dear Prudence, Hey, Jude, and I Wanna Hold Your Hand are among her favorites, since her infancy) and some other obscure songs that I have picked up along the way. The nurse reaccessed her port because of the fever, she played happily with her Lalaloopsies after I assured her that Tippy may miss her friends at home terribly but that she would see them all very soon, and that I would ask her Ama to bring her Knuffle Bunny and her Glo Worm, and she ended up nodding off somewhere around five in the morning.
I love that no matter how precocious my precious daughter is, she believes in me whole-heartedly, and believes in me in a way that I wish I believed in myself. She believes that I am omniscient and all-powerful, and when I tell her that it's going to be alright, she believes that it is. That is an awful lot of power for someone to have who has absolutely no idea what the fuck they're doing. But what mom really does? You do the best you can with what you have, you trust your instincts, you do what feels right to you. You trust that "every little thing is going to be alright", because in the end, it always is.
Monday, March 5, 2012
Yikes!!!
Okay, so the BMT coordinator comes in to confirm that I got the scary ass consent forms (yes...I got them, I read them, I wrote a huge blog about how much they scared the Bejeezus out of me. Check that off your list.) and to confirm that the meeting is THIS Thursday! Yikes! This is all moving by so quickly, I can't believe it.
The BMT coordinator asked if I had any questions. I have a ton, I'm just not sure she has any answers for me. How did we get here? And what will life be like from now on? How long will it be before I stop worrying about her? Am I going to forever be one of those overprotective moms that wipes everything with a Clorox wipe, and how are things going to play out from here?
I am sure that after Thursday, when we have an actual plan, and all of my logistical questions have been answered, I will feel at least slightly better about the fact that there are no guarantees in this, and that the doctors cannot promise me anything. The thing is, they simply don't know what the outcome is going to be. It all depends on what her body is going to do, and it's not up to any of us, not even her. It's up to God. All I can do is keep her as calm and as comfortable as I can, try to keep myself from going insane, and the rest will fall into place. We've come this far. What's the alternative? Not having her? Not an option.
I saw that in the consent form, a codicil about "alternatives to treatment", and it basically said that the only alternative is for a person to refuse treatment, and that this will most likely result in the patient's death. And I'm thinking, really? Who chooses that, that they have to put it in? I mean, I know that there are people in the world who believe that it is God's will to make people sick and consequently to make them die from said illness, so it would be "interfering" to take measures to prevent death. I get it, on a cerebral level. On an emotional level, as a mother who adores the hell out of her spoiled-as-shit daughter, I say hell yeah, it's interfering, but if God didn't want us to interfere, he wouldn't have blessed the scientists who discovered the measures with the knowledge to save thousands upon thousands of lives. I do believe that God allows these illnesses to happen for a reason. I don't believe he causes them as punishment, but for us to learn something we are supposed to learn. I also believe that he puts the medicine and the doctors here as a means of Divine Intervention, a way for people to do His work here on Earth. Not to get all "churchy" on y'all, but yeah, that's what I believe. I believe God helps those who help themselves.
So not only are we doing this, we are doing this Sarah-style...with lots of fight, and lots of pink...We will make her world as bright and cheery as we possibly can so that she will want to stay in it, because as shitty as this world is sometimes, life is worth living. Especially with a little girl who eats bacon like a trucker at a road stop diner, who wears Princess crowns to the mall, and who never goes a day without wearing something pink, EVER. God has big plans for her, I know it. So whatever it is that we need to do, whatever it is they tell us at that meeting on Thursday, we will do it with pride and a smile on our faces because that's what our little girl needs. Bring it on.
The BMT coordinator asked if I had any questions. I have a ton, I'm just not sure she has any answers for me. How did we get here? And what will life be like from now on? How long will it be before I stop worrying about her? Am I going to forever be one of those overprotective moms that wipes everything with a Clorox wipe, and how are things going to play out from here?
I am sure that after Thursday, when we have an actual plan, and all of my logistical questions have been answered, I will feel at least slightly better about the fact that there are no guarantees in this, and that the doctors cannot promise me anything. The thing is, they simply don't know what the outcome is going to be. It all depends on what her body is going to do, and it's not up to any of us, not even her. It's up to God. All I can do is keep her as calm and as comfortable as I can, try to keep myself from going insane, and the rest will fall into place. We've come this far. What's the alternative? Not having her? Not an option.
I saw that in the consent form, a codicil about "alternatives to treatment", and it basically said that the only alternative is for a person to refuse treatment, and that this will most likely result in the patient's death. And I'm thinking, really? Who chooses that, that they have to put it in? I mean, I know that there are people in the world who believe that it is God's will to make people sick and consequently to make them die from said illness, so it would be "interfering" to take measures to prevent death. I get it, on a cerebral level. On an emotional level, as a mother who adores the hell out of her spoiled-as-shit daughter, I say hell yeah, it's interfering, but if God didn't want us to interfere, he wouldn't have blessed the scientists who discovered the measures with the knowledge to save thousands upon thousands of lives. I do believe that God allows these illnesses to happen for a reason. I don't believe he causes them as punishment, but for us to learn something we are supposed to learn. I also believe that he puts the medicine and the doctors here as a means of Divine Intervention, a way for people to do His work here on Earth. Not to get all "churchy" on y'all, but yeah, that's what I believe. I believe God helps those who help themselves.
So not only are we doing this, we are doing this Sarah-style...with lots of fight, and lots of pink...We will make her world as bright and cheery as we possibly can so that she will want to stay in it, because as shitty as this world is sometimes, life is worth living. Especially with a little girl who eats bacon like a trucker at a road stop diner, who wears Princess crowns to the mall, and who never goes a day without wearing something pink, EVER. God has big plans for her, I know it. So whatever it is that we need to do, whatever it is they tell us at that meeting on Thursday, we will do it with pride and a smile on our faces because that's what our little girl needs. Bring it on.
Friday, March 2, 2012
Being honest...
Okay, so those of you who know me well, know that I am a person who prides herself on being honest. Honest with herself and honest with those around her. I hate liars. I hate lying. But then there are those gray areas, where you can be honest with yourself about the way you feel, but there is just something keeping you from being honest with those around you because it makes them uncomfortable. It's not easy, and it does nothing for intimacy in any relationship, but we all have that one thing that goes unsaid. Not because we can't say it, not because we can't admit it, but because saying it would make it a real thing and would probably make people think you're crazy.
We all have our things, and I am no exception. I usually voice what's on my mind, and it is not always well-received, but there are just some things that would make others too uncomfortable, so I don't. But that's not why I started this blog. I started this blog in order to give myself a forum, in order to keep myself in the practice of writing, and in order to be a good writer, I have to be authentic. So here it is:
I have been struggling for awhile with the idea of Sarah's mortality. It was just a nagging little evil idea that would infiltrate into my positive head space every once in awhile, the dreaded what if, the manifestation of the 10% chance that her wonderful team of doctors couldn't save her. A thought would come unbidden, and I would promptly push it out, and think of something positive to replace it.
Now that her chances of survival are more like 50%, the thoughts are coming more frequently and are harder to push out. What if this doesn't work? Then it doesn't help that birth and death seem to be surrounding me. About 70% of the nursing staff is currently pregnant. I am seriously afraid to drink the water around here. The baby showers around here are going to get tedious after the third one. Just sayin'. We have some new little additions to our family as well. So I am not only reminded about my pregnancy with Sarah and how blissful it was, and how blissful we were in that one perfect year, but also the fact that I may never feel that again. I am 32, which is not beyond child-bearing years by anyone's standards, but with everything going on, it would be unfair to all involved to bring another child into the world. And even later on, I just don't think it will be possible. What if Sarah's cancer comes back? What if she dies, how can I even look at another baby after that?
I push the thoughts out, pretend like they don't exist, but then they manifest themselves in other ways. Like spring cleaning. Every three months, I go through Sarah's drawers and cull out what no longer fits, what is too worn or dirty to wear anymore, and figure out what I want to keep and what I want to donate. The thing is, I find myself holding on to almost everything, I would be ready to let it go, and then something would stop me. And at first, I didn't know what. But like I said, I pride myself on being an honest woman. Especially when it comes to myself. So I sat down, and thought about it, and I came to the realization that I didn't want to let her things go because they were hers. What if this doesn't go the way we planned? What if she dies, and her things are all I have left to hold on to?
Now here comes the part where you all think I'm crazy, right? Or at the very least, I've made you uncomfortable, because what do you say to that, right? Let me just say in my own defense that I don't let the thoughts win. They come in, I consider them for a moment, then I shoo them right back out where they belong because I cannot afford to be negative now. But that's the thing. I'm not being pessimistic. If we're being honest here, I'm scared. I am so fucking scared of losing my baby that it is overwhelming sometimes. Because in addition to being honest, I am also a realist. I call a spade a damn shovel, (okay, sometimes I call it a spade, too). But the hard reality is that there is a 50% chance that she might not make it through this. It's not the half I focus on, but it's there, and I can't deny it.
Then tonight, I see a facebook post from a relative of mine who lost her baby two years ago. 9 months old. Literally, her baby. And she posted pictures of his gravestone, shining and clean from her careful preparations, surrounded by flowers, with his name in script and his picture on it. And I cried, not only for him and for her, but for myself and Sarah. What would I do if I ever had to go through that? She must miss her son so much. Then I think about if it were me, and I realize that is an understatement. If it were me, I would miss Sarah every minute of every day of every month of every year for the rest of my life and that pain would never go away. My heart would ache forever because it is unnatural for a parent to bury a child.
There's the thought. Aired, and expressed as honestly as I can do so, laid bare for all to see. And I do not write this to gain pity or respect. I write this because this blog is about Sarah's Journey, and if I am to portray that honestly, I have to portray all of it, in all it's ugliness, in all it's raw truthfulness. It may look to the careless observer like I am basically just a glorified babysitter here in this hospital room, standing watch while the doctors and nurses fight to save her life. But I am fighting, too. I am fighting to stay positive, while at the same time staying grounded. I am fighting to keep Sarah comfortable and happy and give her all that I possibly can, even if others may think she is spoiled, while at the same time teaching her morals and values that I think are important. Like honesty.
We all have our things, and I am no exception. I usually voice what's on my mind, and it is not always well-received, but there are just some things that would make others too uncomfortable, so I don't. But that's not why I started this blog. I started this blog in order to give myself a forum, in order to keep myself in the practice of writing, and in order to be a good writer, I have to be authentic. So here it is:
I have been struggling for awhile with the idea of Sarah's mortality. It was just a nagging little evil idea that would infiltrate into my positive head space every once in awhile, the dreaded what if, the manifestation of the 10% chance that her wonderful team of doctors couldn't save her. A thought would come unbidden, and I would promptly push it out, and think of something positive to replace it.
Now that her chances of survival are more like 50%, the thoughts are coming more frequently and are harder to push out. What if this doesn't work? Then it doesn't help that birth and death seem to be surrounding me. About 70% of the nursing staff is currently pregnant. I am seriously afraid to drink the water around here. The baby showers around here are going to get tedious after the third one. Just sayin'. We have some new little additions to our family as well. So I am not only reminded about my pregnancy with Sarah and how blissful it was, and how blissful we were in that one perfect year, but also the fact that I may never feel that again. I am 32, which is not beyond child-bearing years by anyone's standards, but with everything going on, it would be unfair to all involved to bring another child into the world. And even later on, I just don't think it will be possible. What if Sarah's cancer comes back? What if she dies, how can I even look at another baby after that?
I push the thoughts out, pretend like they don't exist, but then they manifest themselves in other ways. Like spring cleaning. Every three months, I go through Sarah's drawers and cull out what no longer fits, what is too worn or dirty to wear anymore, and figure out what I want to keep and what I want to donate. The thing is, I find myself holding on to almost everything, I would be ready to let it go, and then something would stop me. And at first, I didn't know what. But like I said, I pride myself on being an honest woman. Especially when it comes to myself. So I sat down, and thought about it, and I came to the realization that I didn't want to let her things go because they were hers. What if this doesn't go the way we planned? What if she dies, and her things are all I have left to hold on to?
Now here comes the part where you all think I'm crazy, right? Or at the very least, I've made you uncomfortable, because what do you say to that, right? Let me just say in my own defense that I don't let the thoughts win. They come in, I consider them for a moment, then I shoo them right back out where they belong because I cannot afford to be negative now. But that's the thing. I'm not being pessimistic. If we're being honest here, I'm scared. I am so fucking scared of losing my baby that it is overwhelming sometimes. Because in addition to being honest, I am also a realist. I call a spade a damn shovel, (okay, sometimes I call it a spade, too). But the hard reality is that there is a 50% chance that she might not make it through this. It's not the half I focus on, but it's there, and I can't deny it.
Then tonight, I see a facebook post from a relative of mine who lost her baby two years ago. 9 months old. Literally, her baby. And she posted pictures of his gravestone, shining and clean from her careful preparations, surrounded by flowers, with his name in script and his picture on it. And I cried, not only for him and for her, but for myself and Sarah. What would I do if I ever had to go through that? She must miss her son so much. Then I think about if it were me, and I realize that is an understatement. If it were me, I would miss Sarah every minute of every day of every month of every year for the rest of my life and that pain would never go away. My heart would ache forever because it is unnatural for a parent to bury a child.
There's the thought. Aired, and expressed as honestly as I can do so, laid bare for all to see. And I do not write this to gain pity or respect. I write this because this blog is about Sarah's Journey, and if I am to portray that honestly, I have to portray all of it, in all it's ugliness, in all it's raw truthfulness. It may look to the careless observer like I am basically just a glorified babysitter here in this hospital room, standing watch while the doctors and nurses fight to save her life. But I am fighting, too. I am fighting to stay positive, while at the same time staying grounded. I am fighting to keep Sarah comfortable and happy and give her all that I possibly can, even if others may think she is spoiled, while at the same time teaching her morals and values that I think are important. Like honesty.
Worst...Idea....Ever...
Okay, so worst idea in the history of bad ideas, I decide in my infinite wisdom (insert sarcasm here) to go over the transplant road map and consent forms that were left for me yesterday to prepare for the meeting with the doctor on March 8, formulate my questions and just overall walk into the meeting with an air that I even remotely have my shit together. WORST....IDEA...EVER...
I'm not sure when would have been a better time to read them. It's not like I can concentrate and provide the attention that these papers require while Sarah's awake. And, it's not like she goes to bed at a decent hour most days. But the fact of the matter is, it wouldn't have mattered when I actually sat down to read them.Transplant papers are a dismal read.
I know they are designed to give you a straight-forward delineation of all of the things that could go wrong, to cover their asses in case it does, which there is a 50/50 shot that it will. But me, I'm a visual person. When I read something, I am there, envisioning the situation vividly in my mind as though it is actually happening. And with Sarah's track record for being a walking Murphy's Law and having a propensity toward rare side effects (hello, secondary AML!), is it any wonder that I had a panic attack and/or minor heart attack when I read and envisioned all of these major possible and probable side effects happening to my baby? My baby who has already been through so much? Let me break it down for you, so you can further understand why I got NO sleep last night.
First off, here is the starting line up of the drugs they are going to be giving her pre-transplant when we get admitted on the 19th:
ALEMTUZUMAB (or Campath, I can't even SAY the other name)
Side Effects: Flu-like symptoms such as fever (please, she gets fevers on a random Tuesday), chills, shaking, nausea and vomiting. (Okay, nothing really new here, I can handle that.); Low blood pressure, low blood counts (white cells and platelets), weakened immune system, reinfection from previous CMV virus (I don't even know what that is, so I'm pretty sure she's never had it, cuz if she had, I would know what it is);
LESS COMMON: Fatigue, headache, diarrhea, rash
She will receive this drug for the first four days prior to the actually transplant. Premeds can be given to try to circumvent some of these, and again, this is nothing we've really seen before. Okay, we can do this. Moving on to the next drug...
BUSULFAN:
Destroys cancer cells by interfering with their growth cycle.
Side Effects:Low blood counts for 1 to 3 weeks after treatment (Okay. Nothing new.); Nausea, vomiting, mouth sores, darkening of the skin (again, nothing new.)
LESS COMMON SIDE EFFECTS: Diarrhea, Abnormal liver function tests, Hormonal changes, cough, shortness of breath,(still on board, no problem)
RARE SIDE EFFECTS: Scarring or stiffening of the lungs (wth?), cataracts (wha?) and seizures.
WHOA. Let's stop right there. A moment to take a trip down memory lane and recant to you a story that I have tried very hard to forget, as it still scares the Bejeezus out of me.
Sarah wasn't always sick. When Sarah was born, she was perfect. It was a perfect, normal pregnancy, one of those you see on TV with a glowing mother-to-be and minimal side effects, followed by a nearly effortless birth. That was me. It was the way I had always dreamed conceiving, carrying and bearing a child would be (Minus the stretch marks. I hadn't figured that into the equation, but it seemed like a small price to pay for the GORGEOUS child I got in return). She was born after only after only seven hours of labor, a perfect 9 on the Apgar. She was an easy baby, too. She never cried unless she was hungry or wet. She was alert and smart. She smiled the day she was born, on purpose. She rolled over at three days old. She said her first word at 3 months. For the first year, everything was beautiful and perfect. I tried my hardest to do everything right, to be the best mother I could be to this wonderful, gorgeous creature who was the manifestation of my heart's desire. I had one perfect year.
Then, at 13 months, she caught a cold. Not unheard of, it was early February, the other kids were in school, my mother and I were both teaching elementary school, colds were pretty common. Sarah almost never got sick, she had had only one other cold in her lifetime (not including the two that I caught while I was pregnant). This cold was bad. She spiked a seriously high fever, 103, and my husband and I bathed her, and he dressed her and held her while I administered Tylenol. No sooner had I turned to put the bottle away then he starts frantically calling her name. My husband is not like me. He is not given to hyperbole. He doesn't worry, he doesn't freak out, even when he should. So to hear that panic in his voice was an immediate alarm that something was very, very wrong. I turn around to see my daughter flailing in his arms like a fish. He rushed her into the living room and placed her carefully on the floor until she stopped seizing. Then she went unconscious. I mentioned earlier, my mother and I are teachers. We both know CPR. But I saw my lifeless baby and I froze. My first and only thought was, Oh, God, please. Not now. Don't take her from me. I lost three babies before she came. To have such a perfect, effortless pregnancy; a perfect, effortless delivery, and such a perfect and (nearly) effortless child for one perfect year, seemed like a miracle. A gift from God that I did not deserve. And I carried the fear through the back of my mind throughout that year that it would all disappear. So my thought in that moment was, Not now. Please, God, don't take her from me. Luckily, my mom kept her head, pushed me (gently) out of the way while telling me to calm down, and performed CPR on my lifeless child, who had stopped breathing. I got it together enough to dial 911, as did my husband and stepson (cell phones are WONDERFUL). They instructed us to lay her on her side, and after a moment or two of CPR, she came to and the ambulance arrived. We went to the hospital to run a gamut of tests, after which they assured me that there was no permanent damage, that what she had was a febrile seizure (a seizure brought on by a high fever to prevent damage to the brain), and that it happens more commonly than people might think, that there was no reason to worry about long term damage.
And sure enough, she has never despite all of the fevers she's had since, including the ones that helped us to diagnose her cancer in the first place, had another seizure. Still, more than all of the horrifying things she has been through in the last two years, the memory of that day still scares the Bejeezus out of me more than anything else. So nausea, vomiting, even fevers, bring it on. But seizures? Now you have my attention. Now, I am constantly trying to slow my breathing and heart rate in order to stave off the panic attack that wants to happen as I try to shove the memories of watching my lifeless child before me on the floor out of my head. And we're not even done yet. There's two more to go.
CYCLOPHOSPHAMIDE (or Cytoxan)
Destroys cancer cells by interfering with their growth cycle
Side Effects: Nausea/vomiting, loss of appetite (with Sarah, the loss of appetite is more common than the vomiting), hair loss (what hair?) and low blood counts for 1 to 2 weeks after treatment (so paired with the other one, I'll give her about a month to recover)
LESS COMMON: Blood in the urine (bladder irritation: scary as hell, but not the end of the world), metal taste in the mouth (Sarah freaks out when this happens, but she's dealt with it before, lots of Mentos and Biotene), hormonal changes, heart damage with high doses.
The last one scares me the most, but that's why they do the ECHO and the EKG before hand, to make sure that her heart is strong enough to withstand the chemo, and so that they can mark any changes right away. If she is not peeing enough, they can handle that with more fluid and even diuretics. She is in good hands. We can do this. Seizures are still scarier.
CYCLOSPORINE
helps prevent graft-versus-host disease (which basically means that the bone marrow from the donor will attack the cells in her body because it recognizes them as foreign), may also help to treat aplastic anemia (another life-threatening side effect) and used as a cancer-fighting medicine
Side effects:
Kidney damage (we're leading with that...wonderful), high blood pressure, increased risk of infection, tremor (shaking hands), hair growth on the face with long term use (like I said, I am very visual. Now I am envisioning my sweet little four year old daughter as the bearded lady at the circus). Thickening and growth of the gums with long term use. (Thankfully, she will not be taking these drugs for that long.)
LESS COMMON SIDE EFFECTS:
loss of magnesium in the blood (I'm not sure what that means, or what that will do to her, but I'm sure they have something they can do for that), increase of potassium in the blood (again, I'm sure that's an easy fix), nausea (given), headache, liver damage, seizures (WTF???)
Seriously??? More seizures??? Does giving her two drugs that can cause seizures at once increase her chances of having them? Will it increase the severity if she does have them? I am freaking the eff out. Then comes the consent form, with another chart with the drugs on it, the common, occasional and rare side effects, and the ones that occur immediately, soon thereafter, and later on. The immediate and prompt effects of the drugs are the ones I pretty much just described. Guess what the late effects are for all drugs involved?
Sterility. I believe I have mentioned in this post and in some prior that I lost three babies in two years before Sarah came, all before 9 weeks. I can deal with the possibility of never having grandchildren if it means that my daughter gets to stay. But what about her? Sure, there is always adoption, a perfectly viable and fulfilling way to create a family. I would like to think that I have it in me to love an adopted grandchild as much as I would love a biological one. But the pain of not being able to conceive or sustain a pregnancy is a pain I know all too well. I don't want that for her. I am almost praying she won't want kids, but seeing how she is with her dolls, with other babies, I highly doubt that. And my heart aches for the woman she will become one day who will hurt as I have hurt, having to face the possibility that she may never hold her own flesh and blood in her arms. After all she has been through already, it is only human that I should have the desire within me, the hope that the rest of her life would go smoothly. That she could live a "normal" life and never be touched by infirmity again.
And that's the dream. That's what you hold on to in times like these, the visions of her in her graduation gown, in her prom dress, in her wedding dress, in a hospital gown holding her newborn child. You don't think about the fact that all this crap they are pumping into her may be doing her more harm than good, if the ultimate goal wasn't to keep her alive. But as a few wise women in my life have told me, you have to trust. You have to believe. I have to believe in God who has gotten us this far, who chose me to be Sarah's mother and who chose Sarah to fight this fight. I have to believe in my daughter, who eats fucking nails for breakfast and hates the word "no". Tell her she's not going to live? Tell her she'll never have a child? I don't think so. My money's on her. If there is anything I know about my daughter, it's that she will find a way, one way or another, to get what she wants, and she has a way of bringing what she wants to her, without even trying. The law of attraction is alive and well and manifesting itself like crazy in and through my daughter. She is a determined little thing. A stubborn little thing. Especially when it comes to something that she wants. She gets it from her mother.
So middle of the night freak-out session notwithstanding, I know that we will be okay. All of it seemed overwhelming and scary at first, and not only did we make it through, but may I just say, Miss Boots KICKED ASS! It will be fine. This morning, she lay next to me and I noticed that her hair was starting to grow back from the last treatment cycle. I started envisioning Sarah in her little school uniform, sitting before me in the morning as I braid her long hair or separate it into pigtails for school. All of those gloom and doom details didn't matter, because in that moment, I could actually feel those silken strands between my fingers. And I was thankful, for that moment, and for this.
Miss Bossy Boots' motto is "Faith, Trust, and Pixie Dust." And in the end, isn't that what it all boils down to? We need to believe, and with a little bit of magic, we can fly.
So middle of the night freak-out session notwithstanding, I know that we will be okay. All of it seemed overwhelming and scary at first, and not only did we make it through, but may I just say, Miss Boots KICKED ASS! It will be fine. This morning, she lay next to me and I noticed that her hair was starting to grow back from the last treatment cycle. I started envisioning Sarah in her little school uniform, sitting before me in the morning as I braid her long hair or separate it into pigtails for school. All of those gloom and doom details didn't matter, because in that moment, I could actually feel those silken strands between my fingers. And I was thankful, for that moment, and for this.
Miss Bossy Boots' motto is "Faith, Trust, and Pixie Dust." And in the end, isn't that what it all boils down to? We need to believe, and with a little bit of magic, we can fly.
Thursday, March 1, 2012
BMT, coming up....
Okay, so that totally sounds like a sandwich order, but for those who aren't as hip to the lingo, BMT is short for Bone Marrow Transplant, and in case you haven't heard, Miss Boots has found a 10/10 perfect match--something they told me was next to impossible from an unrelated donor. A few weeks ago when I spoke to the BMT coordinator (STILL sounds like a sandwich!) she said that they had found a donor who was a 9/10 match, and a back-up who was an 8/10, and she assured me that the 9/10 was "as good as it gets". It was the best we could hope for from a non-related donor, and we were happy with that, as long as we had a shot. Then yesterday, I get the miraculous call from the BMT coordinator, delineating a bunch of tests they want to run on Miss Boots pre-transplant, and she says, "Oh, by the way, did I mention that we found a 10/10 donor?" I ran through the previous details she had given me, and she confirmed that, yes, while the 9/10 was the best that we could hope for logisitically, a 10/10 miracle came through sometime in the last week, and we are ready to go.
Today has been a blur of tests and thankfully, Miss Boots got a good night's sleep last night and was in a good mood, so she handled it all beautifully. When the technician came to do her ECHO, basically, an ultrasound of her heart, she chatted jovially with her and insisted that she turn her heart pink (last week, Sarah had another ECHO done, and the same technician amazed her with the many different colors in which she could display her heart on the screen. Guess which was her favorite?) She played with the physical therapist without throwing a tantrum or complaining. She lay extremely and uncharacteristically still during her EKG, even though the 20-some-odd wires they had stuck to her were kind of freaking her out. She sat quietly and as patiently as possible waiting for her x-ray, only asking me twice what was taking them so long (a RECORD, if you know Miss Bossy Boots) and didn't freak out at all once we were in there. She even posed for a picture while we were waiting!
It was only when I had let her stay up a half an hour past her bedtime and I asked her to clean up her toys did she start to throw a fit, because her very complicated Lalaloopsy story line would just have to wait until tomorrow. I don't understand why this upsets her so much. I mean, Rosy Bumps n Bruises can still change her specialty and be a vet tomorrow, right? So, a quick sponge bath and two stories later, she is finally asleep, as well should I be, because they want to wake us up at dawn (okay, 8:30, which is just as good) to perform a kidney function test. At the very least, it is the final test and then we can just go back to waiting for the unnecessary CDIF results to come back (again) so we can get the hell out of this room.
A Word on the CDIF, in case you're confused. CDIF is short for Clostridium Difficilie, a bacterium that resides in the intestines and causes diarrhea when competing bacteria are wiped out by antibiotics. It is resistant to alcohol gel and highly contagious. But here's the thing. Sarah had it once, a long ass time ago. This time around, they are giving her high-dose Ara-C, which is known to cause fevers. Not to mention that Sarah is prone to fevers anyway. But, since they can't be sure that it's the Ara-C that's causing the fever and they want her to be covered in case she has something else, so they start her on antibiotics automatically. Now, certain antibiotics have a natural side-effect of diarrhea. So, she gets the fever, they give her an antibiotic, she's okay. But the fever persists (because of the chemo), so they add another antibiotic on top of the one she's already taking. Her diarrhea gets worse. Now, they think it's CDIF and they have to run tests, but while they do that (and might i add that the tests take FOREVER to come back) we have to be in isolation which means my little social butterfly who loves her walks in the hallway and playing with other kids in the playroom is confined to her room and doesn't see anyone but me and medical staff for days. FUN STUFF. And I know she doesn't have CDIF. I know my daughter, I know the effects these meds have on her, and I am even more vigilant now that what I notice or don't notice could threaten her life. But they have to be sure, and I suppose I'd rather be safe than sorry.
This cycle of chemo was much shorter than the two others, just three days, so the chemo part is over, and now (other than the @#$%ing CDIF) we are just waiting for her counts to drop and come back up again, so that hopefully we can spend at least a few days at home before transplant. Sarah is scheduled to be admitted for transpant March 19. Then, according to the packet that was left for me while we were down in X-Ray and further explained to me on March 8 when we meet with the doctors, it looks like they prep her with a regimen of drugs before the actual donor transplant takes place on March 28, 2012. A day that will forever be a holiday to us, because it will be a day that a random stranger gives us a miracle.
It all seems surreal and somewhat overwhelming, but so did everything else; her initial diagnosis with ALL at just twenty months old. God. Twenty months. She was still a baby. But we made it through all of that. Then, a few months ago, she was diagnosed with a secondary cancer, AML. And it all seemed scary and new and overwhelming. But here we are. We made it through that. This is it. This is the phase that will save my baby, just one more thing to get through, but the most important, the most grueling. We can do this. Bring on the BMT!
Today has been a blur of tests and thankfully, Miss Boots got a good night's sleep last night and was in a good mood, so she handled it all beautifully. When the technician came to do her ECHO, basically, an ultrasound of her heart, she chatted jovially with her and insisted that she turn her heart pink (last week, Sarah had another ECHO done, and the same technician amazed her with the many different colors in which she could display her heart on the screen. Guess which was her favorite?) She played with the physical therapist without throwing a tantrum or complaining. She lay extremely and uncharacteristically still during her EKG, even though the 20-some-odd wires they had stuck to her were kind of freaking her out. She sat quietly and as patiently as possible waiting for her x-ray, only asking me twice what was taking them so long (a RECORD, if you know Miss Bossy Boots) and didn't freak out at all once we were in there. She even posed for a picture while we were waiting!
It was only when I had let her stay up a half an hour past her bedtime and I asked her to clean up her toys did she start to throw a fit, because her very complicated Lalaloopsy story line would just have to wait until tomorrow. I don't understand why this upsets her so much. I mean, Rosy Bumps n Bruises can still change her specialty and be a vet tomorrow, right? So, a quick sponge bath and two stories later, she is finally asleep, as well should I be, because they want to wake us up at dawn (okay, 8:30, which is just as good) to perform a kidney function test. At the very least, it is the final test and then we can just go back to waiting for the unnecessary CDIF results to come back (again) so we can get the hell out of this room.
A Word on the CDIF, in case you're confused. CDIF is short for Clostridium Difficilie, a bacterium that resides in the intestines and causes diarrhea when competing bacteria are wiped out by antibiotics. It is resistant to alcohol gel and highly contagious. But here's the thing. Sarah had it once, a long ass time ago. This time around, they are giving her high-dose Ara-C, which is known to cause fevers. Not to mention that Sarah is prone to fevers anyway. But, since they can't be sure that it's the Ara-C that's causing the fever and they want her to be covered in case she has something else, so they start her on antibiotics automatically. Now, certain antibiotics have a natural side-effect of diarrhea. So, she gets the fever, they give her an antibiotic, she's okay. But the fever persists (because of the chemo), so they add another antibiotic on top of the one she's already taking. Her diarrhea gets worse. Now, they think it's CDIF and they have to run tests, but while they do that (and might i add that the tests take FOREVER to come back) we have to be in isolation which means my little social butterfly who loves her walks in the hallway and playing with other kids in the playroom is confined to her room and doesn't see anyone but me and medical staff for days. FUN STUFF. And I know she doesn't have CDIF. I know my daughter, I know the effects these meds have on her, and I am even more vigilant now that what I notice or don't notice could threaten her life. But they have to be sure, and I suppose I'd rather be safe than sorry.
This cycle of chemo was much shorter than the two others, just three days, so the chemo part is over, and now (other than the @#$%ing CDIF) we are just waiting for her counts to drop and come back up again, so that hopefully we can spend at least a few days at home before transplant. Sarah is scheduled to be admitted for transpant March 19. Then, according to the packet that was left for me while we were down in X-Ray and further explained to me on March 8 when we meet with the doctors, it looks like they prep her with a regimen of drugs before the actual donor transplant takes place on March 28, 2012. A day that will forever be a holiday to us, because it will be a day that a random stranger gives us a miracle.
It all seems surreal and somewhat overwhelming, but so did everything else; her initial diagnosis with ALL at just twenty months old. God. Twenty months. She was still a baby. But we made it through all of that. Then, a few months ago, she was diagnosed with a secondary cancer, AML. And it all seemed scary and new and overwhelming. But here we are. We made it through that. This is it. This is the phase that will save my baby, just one more thing to get through, but the most important, the most grueling. We can do this. Bring on the BMT!
Tuesday, February 7, 2012
Sarah's Childhood Bucket List, Part Deuce...
Okay, so I knew when I was writing part one that I am way exhausted and was so not thinking clearly, as is wont to happen when you have a really important list to write! So once I had a chance to think about it, and spend some time with my gorgeous little girl when she is her happy, smiley sunshiney self and not the little gremlin she has been the past few days, I of course came up with some things to add to the list, so here goes:
11. Go to Disneyland for every holiday:
Before the days of annual passes, Disneyland tickets were way out of the price range of a struggling family of five, yo. So although we have taken the kids to Disneyland our fair share of times over the years, it is usually reserved for special occasions like the kids' birthdays. Now that we have the annual passes, I want to share the experience of every holiday at Disneyland with my baby for the first time. Halloween, Christmas, New Year's, I want to do it all. Granted, this one will take at least a year to fulfill, maybe longer, but I am banking on the fact that Sarah will be around and up for it.
12. Get on every ride at Disneyland at least once.
I am ashamed to say as a Southern Californian for most of my life (there was that stint in Utah for about five years in my childhood) there are still some rides I have never been on. That's right. Never. Some because they scared the bejeezus out of me in my earlier years, some because I just didn't feel the need to get on, but I figure if my tiny little four year old can brave the enormous ferris wheel in the SLIDING bucket at California Adventures, I'd better damn well suck it up, and since Disneyland is our favorite place on the planet (besides the bookstore) I figure we'd best know it stem to stern.
13. Disney on Ice
Miss Boots wanted to go this year and couldn't for obvious reasons. Our prayer is that this transplant takes in March and by the time this comes around again, she will have a cute little pixie haircut to go with. It breaks my heart to see her watching it over and over again on youtube. As soon as it is humanly possible, I am taking her for real!
14. The circus
Having a child get sick before their second birthday sucks because by the time she was old enough to do anything and enjoy it, she was too sick to go. The circus is one of my earliest memories. I was about two or three, watching the circus on tv in my grandparents' bedroom, bouncing up and down on the bed and watching a black panther walk across a tightrope. I got all excited when my grandfather told me that it was "Vety", my grandmother's black cat (the cat's rightful name was "Sylvester", we called him "Vety" for short). I got excited and then confused because I had just seen the cat go underneath the bed, so I leaned over the side of the bed to look for the cat, and BAM! My first head injury...( I think, anyway!) Head injury aside, watching that panther cross the tightrope is one of my fondest childhood memories, maybe because my grandfather died not long after that, maybe because I was happy and innocent like a child should be, but whatever the reason, I want my child to experience just a bit of that magic. Plus, she asked to go, and what the boss wants, the boss gets (so long as she behaves...)
So there are the ones I came up with, I will amend the list as other things come up, but this is a good solid list to start with for now. I'm kind of excited! :)
11. Go to Disneyland for every holiday:
Before the days of annual passes, Disneyland tickets were way out of the price range of a struggling family of five, yo. So although we have taken the kids to Disneyland our fair share of times over the years, it is usually reserved for special occasions like the kids' birthdays. Now that we have the annual passes, I want to share the experience of every holiday at Disneyland with my baby for the first time. Halloween, Christmas, New Year's, I want to do it all. Granted, this one will take at least a year to fulfill, maybe longer, but I am banking on the fact that Sarah will be around and up for it.
12. Get on every ride at Disneyland at least once.
I am ashamed to say as a Southern Californian for most of my life (there was that stint in Utah for about five years in my childhood) there are still some rides I have never been on. That's right. Never. Some because they scared the bejeezus out of me in my earlier years, some because I just didn't feel the need to get on, but I figure if my tiny little four year old can brave the enormous ferris wheel in the SLIDING bucket at California Adventures, I'd better damn well suck it up, and since Disneyland is our favorite place on the planet (besides the bookstore) I figure we'd best know it stem to stern.
13. Disney on Ice
Miss Boots wanted to go this year and couldn't for obvious reasons. Our prayer is that this transplant takes in March and by the time this comes around again, she will have a cute little pixie haircut to go with. It breaks my heart to see her watching it over and over again on youtube. As soon as it is humanly possible, I am taking her for real!
14. The circus
Having a child get sick before their second birthday sucks because by the time she was old enough to do anything and enjoy it, she was too sick to go. The circus is one of my earliest memories. I was about two or three, watching the circus on tv in my grandparents' bedroom, bouncing up and down on the bed and watching a black panther walk across a tightrope. I got all excited when my grandfather told me that it was "Vety", my grandmother's black cat (the cat's rightful name was "Sylvester", we called him "Vety" for short). I got excited and then confused because I had just seen the cat go underneath the bed, so I leaned over the side of the bed to look for the cat, and BAM! My first head injury...( I think, anyway!) Head injury aside, watching that panther cross the tightrope is one of my fondest childhood memories, maybe because my grandfather died not long after that, maybe because I was happy and innocent like a child should be, but whatever the reason, I want my child to experience just a bit of that magic. Plus, she asked to go, and what the boss wants, the boss gets (so long as she behaves...)
So there are the ones I came up with, I will amend the list as other things come up, but this is a good solid list to start with for now. I'm kind of excited! :)
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