Today is Day 31. April 29, exactly one month from the date of transplant. A month ago, my baby girl received new bone marrow, and essentially, a new immune system. I am happy to report that for Sarah, today was one of the good days. She woke up at around 1:00 in the afternoon, fussed through her meds, then promptly threw them up. She played, showed the nurses her new Lalaloopsy dress, and even managed to eat a little and keep it down. Given the copious fount of vomit that has surrounded us lately, this is quite an accomplishment. She managed to keep her nighttime meds down. She even took a bath and was out by 8:30. I should have known it was too good to be true.
Those of you who know me or have been following along for the past year and a half already know that as a rule, Sarah doesn't sleep. I do not put her to bed any earlier than 9 pm on the nose, because if I do, it is a power nap and she is up an hour later bouncing off the walls. Tonight is no different. I stupidly figured that given the circumstances, she was worn out enough to go to bed on time and stay asleep throughout the night. I was wrong.
It is now 1:20 am, and Sarah is laying down in the dark because I made her, "watching" Corpse Bride (yeah, my kid is weird like that. She's afraid of the vacuum cleaner, but will totally watch Corpse Bride before bed) and playing with Sir Battlescarred who is wearing a skeleton costume. (Sir Battlescarred is a boy Lalaloopsy, in case you were wondering). She occasionally abandons all pretense that she is even trying to sleep and sits full upright to play out a scene with her dolls. Apparently, she is never going to sleep, EVER!!! Or so she tells me.
It seems hard to believe that we have already shouldered a month of this burden. It all went by so quickly, and yet it has been a lifetime. She recovered counts in record time, and with any luck, we will be home in a matter of weeks.
Home. What will we be going home to, I wonder? Everything will be different. Rooms have been painted and rearranged. What has been my room for 14 years is now my daughter's room. Nothing will be the way we remember it, but it will be a fresh start, for all of us. Brand spanking new, inside and out.
Sunday, April 29, 2012
Monday, April 23, 2012
Trees...
Okay, so this is something I have told almost no one...shhh! It's a secret! (Well, not anymore...)
When I was young(er), I had this dream. The most perfect dream I can ever remember having. In this dream was a tree. A large tree with a thick trunk and high, full branches full of purple leaves. In this dream, I was swinging from the branches of this tree (not like a monkey, but like, in a swing) and I was laughing, perfectly content and happy, the way a child does. I guess I must have been really laughing, because I ended up choking and woke myself up from this perfect dream. It was beautiful, and I never quite forgot it, and it is still one of the "happy place" images I see in my head when life gets hard.
So, with that background info in mind, and my secret perfect dream out in the open now, I told you that story to tell you this that has no essential meaning whatsoever. I just thought it was coincidental, and kind of crazy in a mystical, mysterious kind of way. So here it is.
Lately, that purple tree has been following me. It started out a few months ago, when by some random click of the mouse I happened upon a facebook page for The Stranded Bead, and saw this:
Naturally, it spoke to me and after a few hints on my husband's facebook wall, I broke down when they had a sale and ended up purchasing it for myself. It is hand-crafted, and the quality is excellent. It is one of my favorite necklaces to wear, and it means something to me. It reminds me to be as happy as I can be, as happy as I was in that fragment of a dream.
Then I saw this, a few months later:
It's my tree! But since I already had a tree necklace, I simply placed it on my husband's facebook wall, and forgot about it, but it is still on my most wanted list.
Then, a few weeks or so ago, I see this:
This is my tree. Like, exactly...It will be mine...oh, yes...it will be mine...I know, I already have a tree necklace...:/ I could have two!
And then today, I see this:
Okay, why is this tree stalking me??? What does it want? It is amazing to me, this law of attraction, or the "secret" as we call it around here, how we attract things into our lives. But why this tree, and why always, always in the form of a necklace? What does it all mean?
Maybe it is a reminder to be happy. Maybe I am searching for true bliss, and that tree is a symbol, and since I am searching for it, the universe is bringing it to me. Maybe there are just a lot of tree necklaces out there. But whatever the reason, that dream has been on my mind lately, and I am reminded of it every time I see one of these necklaces. That tree is a symbol, a reminder to be happy, to take pleasure in the simple things, to simplify. All that dream consisted of was me and a tree.
Or maybe I just really, really want these necklaces... ;)
When I was young(er), I had this dream. The most perfect dream I can ever remember having. In this dream was a tree. A large tree with a thick trunk and high, full branches full of purple leaves. In this dream, I was swinging from the branches of this tree (not like a monkey, but like, in a swing) and I was laughing, perfectly content and happy, the way a child does. I guess I must have been really laughing, because I ended up choking and woke myself up from this perfect dream. It was beautiful, and I never quite forgot it, and it is still one of the "happy place" images I see in my head when life gets hard.
So, with that background info in mind, and my secret perfect dream out in the open now, I told you that story to tell you this that has no essential meaning whatsoever. I just thought it was coincidental, and kind of crazy in a mystical, mysterious kind of way. So here it is.
Lately, that purple tree has been following me. It started out a few months ago, when by some random click of the mouse I happened upon a facebook page for The Stranded Bead, and saw this:
 | |||||||||||||||||||||||||
| http://www.facebook.com/strandedbead |
Then I saw this, a few months later:
 | ||||||||||||||||
| Wiry Designs by Mary Logan (http://www.facebook.com/WiryDesigns) |
Then, a few weeks or so ago, I see this:
 | |||||
| Pretty Pretty Pendants (http://www.facebook.com/prettyprettypendants) |
And then today, I see this:
 | |
| Like Mother, Like Daughter {hand stamped jewelry} (http://www.facebook.com/LikeMotherLikeDaughterJewelry) |
Maybe it is a reminder to be happy. Maybe I am searching for true bliss, and that tree is a symbol, and since I am searching for it, the universe is bringing it to me. Maybe there are just a lot of tree necklaces out there. But whatever the reason, that dream has been on my mind lately, and I am reminded of it every time I see one of these necklaces. That tree is a symbol, a reminder to be happy, to take pleasure in the simple things, to simplify. All that dream consisted of was me and a tree.
Or maybe I just really, really want these necklaces... ;)
Day 25...but first...
There are some things I want to address, and of course this is the perfect forum for that!
First of all, to those of you who have been reading, I want to say a deep and heart-felt thank you! I have received a lot of positive feedback, a lot of praise for what I write here, and I want each of you to know how much it means to me. I have been lauded as a "super mom", as a "great writer", and apparently, I am making everyone cry! That is by no means my intention, but it means a lot to me that you are reading the blog, and that you are enjoying it!
I started this blog as a new year's resolution, because I thought it would keep me writing, because it would sort of commit me to writing for the sake of writing every day, or at least more often than I was, and since sitting for a moment or two and typing is much easier and faster (if not more satisfying) than writing long hand, I figured that I would have no excuse. I thought it would be a venue for displaying all of the every day things that we go through, and at the time that it started, our lives were pretty routine. It started out as a way to show people that we were not really extraordinary, that our lives were as close to normal as everyone else's, that there is a way to live with this disease, and while there is a lot that Sarah has missed, there is also a lot she hasn't, and a few unique experiences she has even gained. Most of the hard stuff, I saved for her personal journal. Then, when she got the secondary diagnosis, and it became an outlet, it was almost a relief that someone somewhere knew and understood what I was going through. Now, this blog has sort of taken the place of her personal journal, it has become her personal journal, that I am sharing with the world, or the four people who actual read this.
As for this road I'm on, I am doing what any mother would do for her child, at least, the good ones. You do what needs to be done for your babies; it isn't always easy, but you get through it. That's what it's been like for me, and that's why I started posting more on the blog as things got harder, I felt that people needed to know what I go through, and I don't post everything, and there are things that I mention but I sort of gloss over, but everything I post is real and true from my perspective. I don't always feel inspirational. I get frustrated and I get scared, and I get sad, and I even get morbid. It comes, and I feel it, I let it pass through me and then I let it go, and for a long time I kept that part of it out of the blog. But then I started to think about why, and I realized that it was more about protecting others from my feelings than protecting myself, so I started putting in everything, if only to let other mothers know that I am human, that I am not always this super mom fighting this battle with a straight face all the time. I do cry, not often, because no one has time for me to break down, least of all Sarah, but I do. I let the feelings come, whatever feelings they may be, I let them serve their purpose, and then I let them go. You do what you have to do, we all do. Not that it doesn't feel good to be called a "genius" or a "super mom", and I will not stop anyone who would like to continue :), but what I am doing is not unique or special. I love my daughter, more than I love anyone on the planet, more than I love myself, and I think every mother worth her salt feels the same about her own child. What I have to go through is harder than most, but I am not the only one. There are countless other mothers in this world, in this country, in this very hospital, who endure the same, and worse on a daily basis, and were it not for the INCREDIBLE support system that I do have (ahem, all of you!) I would not be able to get through any of it with my sanity intact. It is not easy for any mother to see her baby unwell or in pain. This experience is downright excruciating to watch sometimes, but if it's that or lose the one thing that means the most to me in this world, I will do it. I will probably cry like a baby afterwards, hell, I'll probably cry more than Sarah will, but I will get through it, because at the end of it, there is a chance, not at all a guarantee, but just a chance that I get to keep my daughter, and wouldn't any mother as in love with her child as I am do the same?
Now, that being said, not everyone is as in love with everything I post here, and that's okay. I do not expect that everyone is going to love everything I post just because I do, but that's the beauty of mass media. There is so much information out there, not all of it is correct or favorable, and not everyone shares the same opinion of what is good or favorable, but we all have a choice, and at the push of a button, all of that information just goes away! Basically put, IF YOU DON'T LIKE IT, STOP READING! I don' t think I can be any simpler or any clearer than that. This blog is about my journey with my daughter, and I am trying to be as real and as honest as I can. If you are more worried about grammar or syntax or word choice, you are missing the fucking point.
It is sort of a "taboo" subject, because people only want the inspirational side of childhood cancer. They don't want to deal with the harsh realities of what even the children who survive have to go through to do it. Everyone loves a happy ending, and I get that, but that is not life. Over half of these children die. It's not negativity, it's a fact. It is an unpreventable fact, and sometimes, most times, and incurable fact. That's reality. Can Faith and Hope and Love supercede that? Absolutely. Are there children who beat this through means that even the doctors don't understand? Of course! But I call a spade a damn shovel, I always have, and this is my online journal, it is not an article. I am reporting here my experiences with my daughter who is battling cancer for the second time. Not everything is going to be accurate, and almost nothing is sugar-coated. I misspell things, I use run-on sentences, and I was an English major! What is written here is the way I feel at the time. I am not writing for the L.A. Times, and I am under no obligation whatsoever to "watch what I say" or print a "retraction" if I get it "wrong". It is what it is. Deal with it.
As for Day 25, Miss Boots was up all night watching Netflix, as her days and nights are now officially confused. Nurse Kara says that more than likely, today is the day for the NG tube. This means that UNSEDATED, they are going to be putting a feeding tube through Sarah's nose and down her throat all the way down into her stomach (I am unsure of whether they bypass the stomach and feed straight into the intestinal tract). Yeah. they are going to do this to SARAH, who barely tolerates an oxygen mask, and only near her face, not on her face. SARAH, who I have to cajole for half an hour just to take her oral medication will have a team of people holding her down and trying to shove a tube into her nose and down her throat. Yeah. the idea is laughable at best. Nurse Kara, who knows and loves my daughter almost as well as I do, is doing her best to keep it from happening, and if she can't she is trying to keep it as easy as possible on everyone, but we both laughed and said that if we had to place bets on who would win the fight of NG tube placement, our money's on her. If they do manage to get it in, I am going to be hard pressed to keep her from pulling it out. It's going to be a rough couple of days, because my daughter is a little baby genius, and she is a cunning little thing. She will lie in wait until I think she's "used to it", until I let my guard down, and the second I leave her alone to take a 30 second bathroom break, she'll have that thing out and a huge mess waiting for everyone else to clean. Sigh.
This is our life, and the truth is, I am not the hero for going through this with her. She is the hero for going through this first hand. Were she old enough, I would be encouraging her to write it all down for herself, but as she is not, we will both have to trust that I am doing a good enough job of writing it down for her, and that I am doing it justice.
First of all, to those of you who have been reading, I want to say a deep and heart-felt thank you! I have received a lot of positive feedback, a lot of praise for what I write here, and I want each of you to know how much it means to me. I have been lauded as a "super mom", as a "great writer", and apparently, I am making everyone cry! That is by no means my intention, but it means a lot to me that you are reading the blog, and that you are enjoying it!
I started this blog as a new year's resolution, because I thought it would keep me writing, because it would sort of commit me to writing for the sake of writing every day, or at least more often than I was, and since sitting for a moment or two and typing is much easier and faster (if not more satisfying) than writing long hand, I figured that I would have no excuse. I thought it would be a venue for displaying all of the every day things that we go through, and at the time that it started, our lives were pretty routine. It started out as a way to show people that we were not really extraordinary, that our lives were as close to normal as everyone else's, that there is a way to live with this disease, and while there is a lot that Sarah has missed, there is also a lot she hasn't, and a few unique experiences she has even gained. Most of the hard stuff, I saved for her personal journal. Then, when she got the secondary diagnosis, and it became an outlet, it was almost a relief that someone somewhere knew and understood what I was going through. Now, this blog has sort of taken the place of her personal journal, it has become her personal journal, that I am sharing with the world, or the four people who actual read this.
As for this road I'm on, I am doing what any mother would do for her child, at least, the good ones. You do what needs to be done for your babies; it isn't always easy, but you get through it. That's what it's been like for me, and that's why I started posting more on the blog as things got harder, I felt that people needed to know what I go through, and I don't post everything, and there are things that I mention but I sort of gloss over, but everything I post is real and true from my perspective. I don't always feel inspirational. I get frustrated and I get scared, and I get sad, and I even get morbid. It comes, and I feel it, I let it pass through me and then I let it go, and for a long time I kept that part of it out of the blog. But then I started to think about why, and I realized that it was more about protecting others from my feelings than protecting myself, so I started putting in everything, if only to let other mothers know that I am human, that I am not always this super mom fighting this battle with a straight face all the time. I do cry, not often, because no one has time for me to break down, least of all Sarah, but I do. I let the feelings come, whatever feelings they may be, I let them serve their purpose, and then I let them go. You do what you have to do, we all do. Not that it doesn't feel good to be called a "genius" or a "super mom", and I will not stop anyone who would like to continue :), but what I am doing is not unique or special. I love my daughter, more than I love anyone on the planet, more than I love myself, and I think every mother worth her salt feels the same about her own child. What I have to go through is harder than most, but I am not the only one. There are countless other mothers in this world, in this country, in this very hospital, who endure the same, and worse on a daily basis, and were it not for the INCREDIBLE support system that I do have (ahem, all of you!) I would not be able to get through any of it with my sanity intact. It is not easy for any mother to see her baby unwell or in pain. This experience is downright excruciating to watch sometimes, but if it's that or lose the one thing that means the most to me in this world, I will do it. I will probably cry like a baby afterwards, hell, I'll probably cry more than Sarah will, but I will get through it, because at the end of it, there is a chance, not at all a guarantee, but just a chance that I get to keep my daughter, and wouldn't any mother as in love with her child as I am do the same?
Now, that being said, not everyone is as in love with everything I post here, and that's okay. I do not expect that everyone is going to love everything I post just because I do, but that's the beauty of mass media. There is so much information out there, not all of it is correct or favorable, and not everyone shares the same opinion of what is good or favorable, but we all have a choice, and at the push of a button, all of that information just goes away! Basically put, IF YOU DON'T LIKE IT, STOP READING! I don' t think I can be any simpler or any clearer than that. This blog is about my journey with my daughter, and I am trying to be as real and as honest as I can. If you are more worried about grammar or syntax or word choice, you are missing the fucking point.
It is sort of a "taboo" subject, because people only want the inspirational side of childhood cancer. They don't want to deal with the harsh realities of what even the children who survive have to go through to do it. Everyone loves a happy ending, and I get that, but that is not life. Over half of these children die. It's not negativity, it's a fact. It is an unpreventable fact, and sometimes, most times, and incurable fact. That's reality. Can Faith and Hope and Love supercede that? Absolutely. Are there children who beat this through means that even the doctors don't understand? Of course! But I call a spade a damn shovel, I always have, and this is my online journal, it is not an article. I am reporting here my experiences with my daughter who is battling cancer for the second time. Not everything is going to be accurate, and almost nothing is sugar-coated. I misspell things, I use run-on sentences, and I was an English major! What is written here is the way I feel at the time. I am not writing for the L.A. Times, and I am under no obligation whatsoever to "watch what I say" or print a "retraction" if I get it "wrong". It is what it is. Deal with it.
As for Day 25, Miss Boots was up all night watching Netflix, as her days and nights are now officially confused. Nurse Kara says that more than likely, today is the day for the NG tube. This means that UNSEDATED, they are going to be putting a feeding tube through Sarah's nose and down her throat all the way down into her stomach (I am unsure of whether they bypass the stomach and feed straight into the intestinal tract). Yeah. they are going to do this to SARAH, who barely tolerates an oxygen mask, and only near her face, not on her face. SARAH, who I have to cajole for half an hour just to take her oral medication will have a team of people holding her down and trying to shove a tube into her nose and down her throat. Yeah. the idea is laughable at best. Nurse Kara, who knows and loves my daughter almost as well as I do, is doing her best to keep it from happening, and if she can't she is trying to keep it as easy as possible on everyone, but we both laughed and said that if we had to place bets on who would win the fight of NG tube placement, our money's on her. If they do manage to get it in, I am going to be hard pressed to keep her from pulling it out. It's going to be a rough couple of days, because my daughter is a little baby genius, and she is a cunning little thing. She will lie in wait until I think she's "used to it", until I let my guard down, and the second I leave her alone to take a 30 second bathroom break, she'll have that thing out and a huge mess waiting for everyone else to clean. Sigh.
This is our life, and the truth is, I am not the hero for going through this with her. She is the hero for going through this first hand. Were she old enough, I would be encouraging her to write it all down for herself, but as she is not, we will both have to trust that I am doing a good enough job of writing it down for her, and that I am doing it justice.
Sunday, April 22, 2012
Day 24...
It has been a crazy couple of days, and somehow, Miss Bossy B has gotten her days and nights switched around, where she sleeps all day and stays up all night. Her pain is not as bad, thank God, but she has been having these crazy reactions to the Cyclosporine, one of the medications she takes to prevent Graft-vs.-Host Disease, the dreaded enemy. It is causing redness in her skin and burning in her cheeks, and while "GVHD" has been bandied about by the doctors and nurses, I just can't bring myself to believe it. It doesn't feel in my gut that that's what it is. But I am not an oncologist, I only know my daughter, but I don't know what happens in the general population of BMT patients, and I am not going to negate what these nurses see on a daily basis. They are in the front lines, every day. I am in denial because I don't want it to be GVHD, because GVHD scares the bejeezus out of me. Sarah engrafted in record time. That is a blessing, but that could also be a bad sign, that something is not right, that there is lots of room for something to go wrong. The rash on her back, on her arms, on the back of her neck, however, doesn't lie.
They tell me that they almost expect to see GVHD rear it's ugly head in one form or another, that in mild forms, it is almost a good thing, because it means that the new immune system is working, and as one of our favorite nurses put it, there is a little "stomp yard battle" going on in her body over whose territory it is. I can deal with that, I kind of have no choice, but I am scared out of my mind. All I can do is pray that it doesn't get worse, that the voice inside my head that tells me that this is not GVHD but just my daughter's sensitive skin, one of the few traits she inherited from me, is correct.
Then there are the thoughts that come unbidden, the ones that I am entertaining more and more though I don't want to, the dreaded what if that comes and lingers in my mind. Evil thoughts born out of fear, what if this is all for nothing? What if I put her through all this misery, all of this torture, and I lose her anyway? Then I remind myself of the alternative, which seems unthinkable, but for religious reasons, people do it every day. They simply pack up their babies and take them home to die. If Sarah loses this battle, at least I will know that I did absolutely everything that I could to help her fight. I have to know that, or I won't make it even another day.
Then I feel totally selfish as I remind myself of all the mothers who are packing up their child's things from a hospital room right now, being forced to leave the hospital for the last time without their child. Don't they feel the exact same way, some of them? Like it was all for nothing? Or can they take comfort in the fact that they did the best that they could, that they were there as much as they could be? Is it enough to hold you together when your world is ending?
The thoughts come, and there is nothing I can do about them but let them serve their purpose, and send them on their way, and pray that I will never have to know what it is to live in a world without Sarah in it. All I can do is pray that my instincts are correct, and that it is simply the medication and not anything more serious. As for now, my silly girl is laying with her daddy and a stack of books, watching a movie before he has to go in to work. She will more than likely be up all night, and with the aid of some really strong coffee, so will I be.
They tell me that they almost expect to see GVHD rear it's ugly head in one form or another, that in mild forms, it is almost a good thing, because it means that the new immune system is working, and as one of our favorite nurses put it, there is a little "stomp yard battle" going on in her body over whose territory it is. I can deal with that, I kind of have no choice, but I am scared out of my mind. All I can do is pray that it doesn't get worse, that the voice inside my head that tells me that this is not GVHD but just my daughter's sensitive skin, one of the few traits she inherited from me, is correct.
Then there are the thoughts that come unbidden, the ones that I am entertaining more and more though I don't want to, the dreaded what if that comes and lingers in my mind. Evil thoughts born out of fear, what if this is all for nothing? What if I put her through all this misery, all of this torture, and I lose her anyway? Then I remind myself of the alternative, which seems unthinkable, but for religious reasons, people do it every day. They simply pack up their babies and take them home to die. If Sarah loses this battle, at least I will know that I did absolutely everything that I could to help her fight. I have to know that, or I won't make it even another day.
Then I feel totally selfish as I remind myself of all the mothers who are packing up their child's things from a hospital room right now, being forced to leave the hospital for the last time without their child. Don't they feel the exact same way, some of them? Like it was all for nothing? Or can they take comfort in the fact that they did the best that they could, that they were there as much as they could be? Is it enough to hold you together when your world is ending?
The thoughts come, and there is nothing I can do about them but let them serve their purpose, and send them on their way, and pray that I will never have to know what it is to live in a world without Sarah in it. All I can do is pray that my instincts are correct, and that it is simply the medication and not anything more serious. As for now, my silly girl is laying with her daddy and a stack of books, watching a movie before he has to go in to work. She will more than likely be up all night, and with the aid of some really strong coffee, so will I be.
Wednesday, April 18, 2012
Day 20...The darkness before the dawn...
Okay, so I'm starting to freak out a little. I admit it. I am not sleeping, not eating, and not for the first time in the past two and half to four years, depending on how far back you want to count. My blogs are becoming more and more disjointed, so apparently, I can no longer write, or even think straight. Sarah spent the night on oxygen and breathing treatments, and she continues to dry heave with no results, which causes back pain. I am hesitant to give her any more boluses because she can't breathe as it is, and more sedation is only going to make it worse. She has to sleep sitting up, with an oxygen mask just to be able to breathe, and for the first time, my daughter looks sick to me.
For the past two and a half years, I have known rationally and cognitively that my daughter is sick. She has cancer. That is the epitome of the word "sick". She has a life-threatening illness. Then contracted a secondary life-threatening illness. She is a very sick little girl by definition. But that's on paper. My life doesn't look like that, at least, it never did to me. To me, this is what I saw on a daily basis, at least, most days:
So you can imagine that rationally, I know it could get so much worse; but in my mind, seeing my baby unconscious with a tube down her throat and a machine breathing for her is just more than I can bear.
Yeah. the doctors said that's a possibility if she continues to have labored breathing. That picture in my head alone is enough to set off the waterworks. Add to that the fact that they can't give me any real answers for what is wrong with her (don't get me wrong, they are doing their absolute best to find answers and to cover her in the meantime for any and all possibilities) and that as soon as I let my guard down something else goes wrong, and it's no wonder I'm a mess!
Luckily, she is now breathing stably on her own, without oxygen or breathing treatments, and while she is still vomiting, she is stable for now.
Today has been the most exhausting day. X-ray, CT scan, vomiting, withdrawals from the Fentanyl, which looks like a scene from Celebrity Rehab, only in my sweet innocent baby. She is literally crawling out of her skin, and there is nothing I can do but hold her and soothe her as best as I can. They are supplementing her with boluses of 10 mics every two hours, when she was on 16 mics every hour, so the boluses help to even her out, but they aren't enough. She is crying for them before they're even due, it is literally like watching an addict chase a high, only in my sweet baby girl. It is painful to watch. I got yelled at for not eating or getting enough sleep, but there just wasn't time today. How do I sit there with a mouthful of sammich when my daughter is writhing in agony on the bed, and all she wants is me? "Tone it down, kid, Momma needs her ham and cheese." After all that, the doctors still don't have any definitive answers, although they are leaning towards pneumonia based on her X-rays and CT scans. They have covered their bases for whatever with antibiotics and such, and they will continue to stay on top of it, repeating the X-ray tomorrow to see if there is any change. If she continues laboring to breathe, they will send her up to the PICU to sedate her, intubate her and put her on a ventilator. Her white cells are elevated, which means that somewhere in her body there is something to fight off, which in and of itself is alarming given her fragile state; but on the other hand, it means her new immune system is working, and that is a positive sign.
I am doing my best to hold it together, because when it seeps through, she ends up apologizing to me for her own pain, and I can't have that. All we can do is be thankful for the small blessings, SO much support from friends and family and even the staff (several nurses gave me the Mom face for not eating today), and the fact that she still has some fight left in her, even if it's directed at me. She can be mad at me as long as she stays, and the heartbreaking part of it is that she has been so good with everything they have asked of her. Breathing treatment? Sure, we're playing elephant with the hose. Lay on this conveyer belt with my arms above my head and lie PERFECTLY STILL at four years old? Sure. Can Castles come? (For those out of the loop, Castles is Sarah's best toy, the pink unicorn she has had since she was eight months old, and he has been here for the whole ride, every test, every scan, every procedure) He needs to put his arms up, too! (He totally did, I wish I had taken a picture!) Suck mucous out of my nose when I am dead tired? Okay, but I get to put in the saline. Change my diaper? EFF YOU, that's what Momma's for! I don't want her to sleep! (She literally said this last night, except for the eff you part)
She has been so good through all of this, and I am so proud of her. I am hoping and praying that tomorrow is a better day. As for now, I am going to forage for food and then try to get some sleep. Whatever tomorrow brings, I will be ready.
For the past two and a half years, I have known rationally and cognitively that my daughter is sick. She has cancer. That is the epitome of the word "sick". She has a life-threatening illness. Then contracted a secondary life-threatening illness. She is a very sick little girl by definition. But that's on paper. My life doesn't look like that, at least, it never did to me. To me, this is what I saw on a daily basis, at least, most days:
THIS:
NOT:
So you can imagine that rationally, I know it could get so much worse; but in my mind, seeing my baby unconscious with a tube down her throat and a machine breathing for her is just more than I can bear.
Yeah. the doctors said that's a possibility if she continues to have labored breathing. That picture in my head alone is enough to set off the waterworks. Add to that the fact that they can't give me any real answers for what is wrong with her (don't get me wrong, they are doing their absolute best to find answers and to cover her in the meantime for any and all possibilities) and that as soon as I let my guard down something else goes wrong, and it's no wonder I'm a mess!
Luckily, she is now breathing stably on her own, without oxygen or breathing treatments, and while she is still vomiting, she is stable for now.
Today has been the most exhausting day. X-ray, CT scan, vomiting, withdrawals from the Fentanyl, which looks like a scene from Celebrity Rehab, only in my sweet innocent baby. She is literally crawling out of her skin, and there is nothing I can do but hold her and soothe her as best as I can. They are supplementing her with boluses of 10 mics every two hours, when she was on 16 mics every hour, so the boluses help to even her out, but they aren't enough. She is crying for them before they're even due, it is literally like watching an addict chase a high, only in my sweet baby girl. It is painful to watch. I got yelled at for not eating or getting enough sleep, but there just wasn't time today. How do I sit there with a mouthful of sammich when my daughter is writhing in agony on the bed, and all she wants is me? "Tone it down, kid, Momma needs her ham and cheese." After all that, the doctors still don't have any definitive answers, although they are leaning towards pneumonia based on her X-rays and CT scans. They have covered their bases for whatever with antibiotics and such, and they will continue to stay on top of it, repeating the X-ray tomorrow to see if there is any change. If she continues laboring to breathe, they will send her up to the PICU to sedate her, intubate her and put her on a ventilator. Her white cells are elevated, which means that somewhere in her body there is something to fight off, which in and of itself is alarming given her fragile state; but on the other hand, it means her new immune system is working, and that is a positive sign.
I am doing my best to hold it together, because when it seeps through, she ends up apologizing to me for her own pain, and I can't have that. All we can do is be thankful for the small blessings, SO much support from friends and family and even the staff (several nurses gave me the Mom face for not eating today), and the fact that she still has some fight left in her, even if it's directed at me. She can be mad at me as long as she stays, and the heartbreaking part of it is that she has been so good with everything they have asked of her. Breathing treatment? Sure, we're playing elephant with the hose. Lay on this conveyer belt with my arms above my head and lie PERFECTLY STILL at four years old? Sure. Can Castles come? (For those out of the loop, Castles is Sarah's best toy, the pink unicorn she has had since she was eight months old, and he has been here for the whole ride, every test, every scan, every procedure) He needs to put his arms up, too! (He totally did, I wish I had taken a picture!) Suck mucous out of my nose when I am dead tired? Okay, but I get to put in the saline. Change my diaper? EFF YOU, that's what Momma's for! I don't want her to sleep! (She literally said this last night, except for the eff you part)
She has been so good through all of this, and I am so proud of her. I am hoping and praying that tomorrow is a better day. As for now, I am going to forage for food and then try to get some sleep. Whatever tomorrow brings, I will be ready.
Tuesday, April 17, 2012
Day 19...Bloody Tuesday...
Okay, so Miss Boots woke up pretty much every hour on the hour last night with night terrors and pain. I'm almost positive the night terrors were brought on by Nurse Pushy, who is so ridiculously by the book that she seems to have lost her bedside manner completely. Is it really necessary to wake her from a sound sleep to weight her? I mean, really? I know it has to be done every shift, but is it necessary to make her uncomfortable to do it? And then, once you have her awake, to harangue her about the two meds she hasn't taken, which I wasn't going to bug her about because they're not crucial medications? I mean, I could be wrong, but when you have a nurse like this, and your child wakes up every hour screaming, "No! Go away! Leave me alone!", there may just be a connection. Just sayin'...
So, at 5 am, Sarah wakes up, complaining of pain and asking for a movie and for me to lay down with her, which I did in the interest of possibly getting some sort of sleep. Imagine my chagrin when the child proceeds to vomit all over me, herself, and the bed with no warning. Sarah is not usually one to throw up, never has been. Even during two and a half years of chemo for her ALL treatment, she threw up maybe twice. I could tell she was nauseous if she refused to eat, but this child is not one to have a tender tummy. But AML is a whole different ballgame. WAY stronger chemo means WAY stronger reactions, and they same ol' tried-and-true meds just aren't cutting it anymore. So now, she's an up-chucker. Fine,I can deal with it, but usually, she'll give some sort of a warning, either she'll cough first if she doesn't see it coming, or if she does, she'll flat out say she has to throw up. One minute, she is stroking my cheek, the next, she is vomiting everywhere, and there's blood clots in it. BLOOD CLOTS. One of the warning signs I'm supposed to be watching out for.
Long story short, the doctors decide to take x-rays of her chest and abdomen, and don't really find anything. They transfuse platelets, they want to start antibiotics and have to re-access her port. They have to put her on oxygen and give her an Albuterol breathing treatment because she is not getting enough oxygen. It has been a long day.
The only highlight was when her little "boyfriend", Julian, came to visit. Julian is a fellow cancer patient here at CHOC, and together they are the cutest thing ever. They are inseparable when they are together, they don't ever want to leave each other. Julian has not been feeling well, either, so I know that the visit did them both a lot of good. The best Sarah has felt all day was when Julian was here, and I am so grateful that his mother decided to bring him in spite of the fact that Sarah wasn't feeling well, because she would have spent the remainder of her day feeling miserable if he hadn't come. It has been a long day, I am EXHAUSTED (even more than usual) and a picture is worth a thousand words, so here:
So, at 5 am, Sarah wakes up, complaining of pain and asking for a movie and for me to lay down with her, which I did in the interest of possibly getting some sort of sleep. Imagine my chagrin when the child proceeds to vomit all over me, herself, and the bed with no warning. Sarah is not usually one to throw up, never has been. Even during two and a half years of chemo for her ALL treatment, she threw up maybe twice. I could tell she was nauseous if she refused to eat, but this child is not one to have a tender tummy. But AML is a whole different ballgame. WAY stronger chemo means WAY stronger reactions, and they same ol' tried-and-true meds just aren't cutting it anymore. So now, she's an up-chucker. Fine,I can deal with it, but usually, she'll give some sort of a warning, either she'll cough first if she doesn't see it coming, or if she does, she'll flat out say she has to throw up. One minute, she is stroking my cheek, the next, she is vomiting everywhere, and there's blood clots in it. BLOOD CLOTS. One of the warning signs I'm supposed to be watching out for.
Long story short, the doctors decide to take x-rays of her chest and abdomen, and don't really find anything. They transfuse platelets, they want to start antibiotics and have to re-access her port. They have to put her on oxygen and give her an Albuterol breathing treatment because she is not getting enough oxygen. It has been a long day.
The only highlight was when her little "boyfriend", Julian, came to visit. Julian is a fellow cancer patient here at CHOC, and together they are the cutest thing ever. They are inseparable when they are together, they don't ever want to leave each other. Julian has not been feeling well, either, so I know that the visit did them both a lot of good. The best Sarah has felt all day was when Julian was here, and I am so grateful that his mother decided to bring him in spite of the fact that Sarah wasn't feeling well, because she would have spent the remainder of her day feeling miserable if he hadn't come. It has been a long day, I am EXHAUSTED (even more than usual) and a picture is worth a thousand words, so here:
This was taken as he was about to leave, which made Sarah super sad. :(
It totally made up for all of the crap that she went through today. For all that, we still don't have any answers, although the doctors and nurses are doing the best they can, and all we can do is have faith and pray. Which is total crap from a mother's perspective because I want to do something. But there is nothing for me to do but wait and see, and try to make her as comfortable and as happy as I can. Maybe tomorrow there will be answers. Today, there is fear, and frustration and self-doubt, and so much love. But mostly love. We can start there.
Monday, April 16, 2012
Day 18...
Okay, so today Miss Boots woke up with an attitude. Yesterday, she was up by 5 am, happily playing with all of her Lalaloopsies, big and small, and went steadily on until about 5 pm, when we both crashed out. Last night, she cried all the way through her bath, woke up intermittently because the mucositis is causing apnea and her oxygen levels are dropping way low, so they have to give her oxygen, which she hates. This morning, she woke up at noon when her daddy burst through the door bearing gifts, a manila envelope full of little trinkets and odds and ends from the Grand Prix that some of the ladies from his work, who adore her, put together, complete with two inflatable snake swords, so we can duke it out in case she feels the need to bite me again.
She was ecstatic to see her daddy, and gave the contents of that manila envelope minimal enthusiasm. She lay there and watched Ponyo, didn't say a word to her father about anything she's been up to this week, possibly because her activities for the week were pretty much limited to sleeping, fighting bath and meds, and vomiting. In other words, this was not normal behavior for her,and it was pretty evident she was not feeling well.
We fought to get meds in her, but once in, they stayed down, which is a good sign, and her pain meds have been weaned down slightly, with no complications so far. Thanks to an episode of Nurse Jackie, I now realize that they Fentanyl they are pumping into my baby round the clock is stronger than morphine, and she has to be taken off slowly so that she doesn't go through withdrawals. I want to throw up just thinking about it.
Right now, she is happily playing with a volunteer, and it seems that things are moving along in the right direction. Her counts are at 294 today, and she needs to be at 500 for three days in a row in order to go home, plus be weaned off the Fentanyl, weaned off the TPN and eating regularly on her own, and everything that is currently being administered through her tubes has to be taken by mouth without a fight. So, in other words, we are halfway there counts-wise, but we still have a long way to go, and once we go home, the fight isn't over. The doctor said that the graft-vs.-host disease could set in at anytime, and my life is about to get a whole lot more complicated before it gets any easier. But with the rise of children dying from cancer I seem to see lately, what is the alternative?
The fact of the matter is that this child is scaring me more than anything else. Lately, usually when I'm fighting her to take her medicine, she will tell me that she's scared. When I ask what she's scared of, she says that she's afraid of the dark, but she will say this at odd times, like when the light is on, or in broad daylight, when it's not dark at all. I will say just this, and she simply repeats herself, that she's scared. Knowing my daughter all too well, I figured she was using it as an excuse to get out of taking her meds, until yesterday, when she asked me randomly as we were playing if Heaven was dark. I told her that it was not, that Heaven is light all the time, even at night, and I asked her why. She said, "Because I'm afraid of the dark. I don't want to go to Heaven if it's dark. I don't want to die. I want to stay here with you." Of course, I started to cry, and this seemed to upset her more, as she tried to grind the tears out of my eyes with her tiny fists the same way she does hers (Imagine this. This works out to be essentially her lightly punching me in the eye).
Where she got the idea that she is going to die is a mystery to me. I have never said this to her, no matter how desperate I have gotten to get her to take her medicine, no matter how frustrated I have been, nor has anyone else said this to her or even around her. This is something I would never allow. I don't want that idea in her head. I believe in the Law of Attraction, and I have seen that in a child, and in a child as strong-willed as Sarah especially, it is especially strong. I have seen it in action where Sarah is concerned. She has a way of bringing things she wants toward her with uncanny accuracy. She doesn't want to ride in my car, but in Daddy's? Boom, my car won't start. Mommy said she has to wait for that new toy? Someone else will send one in the mail, or Child Life will bring it as a prize. So, I'm sure I don't need to explain why I wouldn't want any mention of death around this child when the force is so strong with this one.
And where did this little baby genius of mine get the idea, much less connect the dots, that death is darkness? As I have mentioned before, I am not in the habit of having philosophical arguments with my four-year-old, although, apparently, I totally could. The doctor says he is more than pleased with the way things are going, that she is progressing well, all things considered, and that we should be home in no time if she keeps doing well. It is my daughter that is scaring me senseless, when she says things like this.
Is this simply a fear, or is there something she knows that I don't? Is she simply scared of death when it is so imminent, as any other normal human would be, or does she know that her time is running short? Something within me tells me that since I carried her within me for nine months, since I spend 24 hours a day with her and since we are unbelievably in tune, that I would know if her time is running short, that I would be able to feel it if she were slipping away from me. But then the fear sets in in me, and I just don't know if that's true. How many other mother's have lost their children and didn't see it coming?
As I have said to the point of redundancy, and what I have been told more times than I count, is that there is nothing to be done but to have faith, to wait and see. While I do believe that children know more than they are given credit for, there is much to be said for experience. No matter how smart she is, she is only four after all, and she is certainly no match for the world-class oncologists monitoring her care. I put my faith in them, and in the wisdom God has given them.
She was ecstatic to see her daddy, and gave the contents of that manila envelope minimal enthusiasm. She lay there and watched Ponyo, didn't say a word to her father about anything she's been up to this week, possibly because her activities for the week were pretty much limited to sleeping, fighting bath and meds, and vomiting. In other words, this was not normal behavior for her,and it was pretty evident she was not feeling well.
We fought to get meds in her, but once in, they stayed down, which is a good sign, and her pain meds have been weaned down slightly, with no complications so far. Thanks to an episode of Nurse Jackie, I now realize that they Fentanyl they are pumping into my baby round the clock is stronger than morphine, and she has to be taken off slowly so that she doesn't go through withdrawals. I want to throw up just thinking about it.
Right now, she is happily playing with a volunteer, and it seems that things are moving along in the right direction. Her counts are at 294 today, and she needs to be at 500 for three days in a row in order to go home, plus be weaned off the Fentanyl, weaned off the TPN and eating regularly on her own, and everything that is currently being administered through her tubes has to be taken by mouth without a fight. So, in other words, we are halfway there counts-wise, but we still have a long way to go, and once we go home, the fight isn't over. The doctor said that the graft-vs.-host disease could set in at anytime, and my life is about to get a whole lot more complicated before it gets any easier. But with the rise of children dying from cancer I seem to see lately, what is the alternative?
The fact of the matter is that this child is scaring me more than anything else. Lately, usually when I'm fighting her to take her medicine, she will tell me that she's scared. When I ask what she's scared of, she says that she's afraid of the dark, but she will say this at odd times, like when the light is on, or in broad daylight, when it's not dark at all. I will say just this, and she simply repeats herself, that she's scared. Knowing my daughter all too well, I figured she was using it as an excuse to get out of taking her meds, until yesterday, when she asked me randomly as we were playing if Heaven was dark. I told her that it was not, that Heaven is light all the time, even at night, and I asked her why. She said, "Because I'm afraid of the dark. I don't want to go to Heaven if it's dark. I don't want to die. I want to stay here with you." Of course, I started to cry, and this seemed to upset her more, as she tried to grind the tears out of my eyes with her tiny fists the same way she does hers (Imagine this. This works out to be essentially her lightly punching me in the eye).
Where she got the idea that she is going to die is a mystery to me. I have never said this to her, no matter how desperate I have gotten to get her to take her medicine, no matter how frustrated I have been, nor has anyone else said this to her or even around her. This is something I would never allow. I don't want that idea in her head. I believe in the Law of Attraction, and I have seen that in a child, and in a child as strong-willed as Sarah especially, it is especially strong. I have seen it in action where Sarah is concerned. She has a way of bringing things she wants toward her with uncanny accuracy. She doesn't want to ride in my car, but in Daddy's? Boom, my car won't start. Mommy said she has to wait for that new toy? Someone else will send one in the mail, or Child Life will bring it as a prize. So, I'm sure I don't need to explain why I wouldn't want any mention of death around this child when the force is so strong with this one.
And where did this little baby genius of mine get the idea, much less connect the dots, that death is darkness? As I have mentioned before, I am not in the habit of having philosophical arguments with my four-year-old, although, apparently, I totally could. The doctor says he is more than pleased with the way things are going, that she is progressing well, all things considered, and that we should be home in no time if she keeps doing well. It is my daughter that is scaring me senseless, when she says things like this.
Is this simply a fear, or is there something she knows that I don't? Is she simply scared of death when it is so imminent, as any other normal human would be, or does she know that her time is running short? Something within me tells me that since I carried her within me for nine months, since I spend 24 hours a day with her and since we are unbelievably in tune, that I would know if her time is running short, that I would be able to feel it if she were slipping away from me. But then the fear sets in in me, and I just don't know if that's true. How many other mother's have lost their children and didn't see it coming?
As I have said to the point of redundancy, and what I have been told more times than I count, is that there is nothing to be done but to have faith, to wait and see. While I do believe that children know more than they are given credit for, there is much to be said for experience. No matter how smart she is, she is only four after all, and she is certainly no match for the world-class oncologists monitoring her care. I put my faith in them, and in the wisdom God has given them.
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