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.
Friday, April 13, 2012
So many books....so little time....
Okay, this post is going to be somewhat confusing to those of you who have been following along, because it has nothing to do with the BMT. But it has been on my mind, and this is my forum for whatever is on my mind, that is the whole point of blogging, so here it is.
We are in the processes of making over our home while Sarah is in the hospital, and I say processes because there is a team of volunteers that come over and are doing more than one thing at once. Painting all the rooms, deep cleaning, cleaning all of Sarah's toys, dusting, washing, etc. It is spring cleaning times 100, because every nook and cranny must be pristine for Sarah's arrival. We are changing over her room to my old one, or the "princess room" as I call it, because it is the biggest bedroom in the house, has the largest closet, and has been my room since we moved into the house nearly 14 years ago, belonged to the two little girls of the tenant before that, and so it was only right that Sarah have it now.
So, needless to say, there is a lot of chaos going on in our home at the moment, and my mom said that the general concensus of the opinions of the volunteers were these: Sarah has too many toys, and we both have too many books.
Not that I owe anyone an explanation, but I have been ruminating on this, and these are my thoughts. How could anyone possibly have too many books? Books are essential to one's soul. They are a cathartic escape.
Apparently, the common practice with books is to give them away or donate them as soon as you are done reading, and this is why it has been deemed that both Sarah and I have "too many books". I do not understand this practice, at all. I never have.
I LOVE my books, I love the nook, too, but I love my actual physical hard copies. I don't think you can have too many. You develop a relationship with them while you are reading. Giving them away after you're done is like giving away your prom photos, or taking a puppy back to the pet store after you're done playing with it. It doesn't make sense to me and I love to revisit them again and again. They are like old friends, each one a memory, and I like to reread them as I see or hear something that reminds me of them.
Reading is essential to one's soul, as I said, and essential to one's life. After walking, talking, and basic life skills are taught, the very first thing we are taught to do is read. We are encouraged to do it, even forced to do it all through our academic careers, and even those who eschew reading for pleasure have no other choice if they would like to eat out, or drive, or apply for a job. I have read to Sarah from the womb on up to the present day. She loves books, too. Here at the hospital, they have volunteers that come expressly for the purpose of reading to the children. Yesterday, a volunteer came to do just that, and as she was reading a fourth book to Sarah (the volunteers already know Sarah and come well-prepared to stay for awhile), her friend and fellow volunteer came in and asked if she could hang out in our room, because no one else "needed" her. I was astonished. My child adores being read to, and keeps the volunteers for hours, reading book after book, then asks me to do it, or the nurses to do it once they have gone. It amazed me to realize that not all children like to be read to. Not only that, it saddened me. Books were as essential to my childhood as my toys or cartoons. Each one held a memory, a bit of magic that is what makes childhood so great. Where would I have been without Tuck Everlasting, Ramona Quimby, Age 8, or The Babysitter's Club series? When did television and toys become "cooler" than books?
I am proud that my child shares my love of books, and that each one is a friend to her as mine are to me. One of our favorite haunts is the library, which she loves, but she has the same problem that I do with it: When the two weeks are up, she cannot bear to part with "her" books. Understanding this all too well, we either check out the same books over and over, or we make a trip to the Barnes and Noble, which ranks just above the library and just underneath Disneyland on the list of Sarah's favorite places, and purchase a copy of the books she can't live without. Every time we go, I cannot help but remember frequenting the bookstore as a child with my own mother, and marveling at how she managed to keep me in books. I was a voracious reader, and three 100-page chapter books would last me a week at best, and there we went the following week, to buy three more. I think my mother, who was single and on a limited budget raising two children on her own, had an easier time keeping us clothed and shod than she had of keeping my library stocked with fresh reading material. But my love of books was something she understood as well, so she did it, and I am so grateful, because now I can share that love with Sarah.
Sadly, the Barnes and Noble is always deserted enough that even when her counts aren't great, I can safely take her there, and if we go in the early morning hours when the other children are in school, we have the entire children's section to ourselves. It is a memory I want her to have, as special and magical as the ones I have from my own childhood, the smell of fresh ink on paper, the cool crispness of the air, to prevent the books from moldering, the vast array of books printed with bright and happy colors, each filled with wonder and magic and light, on any subject you can imagine. There is a whole world in there, or more accurately, many worlds just waiting to be discovered, and yet, there are so many who miss it. How sad for them.
I love that books are a source of pleasure and catharsis for us both, and that we have this to bond over. Already, I can share with her my favorite picture books, we can discover some anew, and as she gets older, I can pass down more and more. I love the fact that there will be one more bibliophile in the world, because apparently, they are a dying breed. And it is a proven fact that children who are read to on a regular basis do better in school, and carry a lifetime love of reading. If there is anything I hear about more often than the fact that Sarah has too many toys, or that we both have too many books, it's the fact that Sarah is extremely brilliant, and the smartest four year old that most people have come across. You can't argue with that.
By that logic, having too many books is like being too smart. It's impossible.
We are in the processes of making over our home while Sarah is in the hospital, and I say processes because there is a team of volunteers that come over and are doing more than one thing at once. Painting all the rooms, deep cleaning, cleaning all of Sarah's toys, dusting, washing, etc. It is spring cleaning times 100, because every nook and cranny must be pristine for Sarah's arrival. We are changing over her room to my old one, or the "princess room" as I call it, because it is the biggest bedroom in the house, has the largest closet, and has been my room since we moved into the house nearly 14 years ago, belonged to the two little girls of the tenant before that, and so it was only right that Sarah have it now.
So, needless to say, there is a lot of chaos going on in our home at the moment, and my mom said that the general concensus of the opinions of the volunteers were these: Sarah has too many toys, and we both have too many books.
Not that I owe anyone an explanation, but I have been ruminating on this, and these are my thoughts. How could anyone possibly have too many books? Books are essential to one's soul. They are a cathartic escape.
Apparently, the common practice with books is to give them away or donate them as soon as you are done reading, and this is why it has been deemed that both Sarah and I have "too many books". I do not understand this practice, at all. I never have.
I LOVE my books, I love the nook, too, but I love my actual physical hard copies. I don't think you can have too many. You develop a relationship with them while you are reading. Giving them away after you're done is like giving away your prom photos, or taking a puppy back to the pet store after you're done playing with it. It doesn't make sense to me and I love to revisit them again and again. They are like old friends, each one a memory, and I like to reread them as I see or hear something that reminds me of them.
Reading is essential to one's soul, as I said, and essential to one's life. After walking, talking, and basic life skills are taught, the very first thing we are taught to do is read. We are encouraged to do it, even forced to do it all through our academic careers, and even those who eschew reading for pleasure have no other choice if they would like to eat out, or drive, or apply for a job. I have read to Sarah from the womb on up to the present day. She loves books, too. Here at the hospital, they have volunteers that come expressly for the purpose of reading to the children. Yesterday, a volunteer came to do just that, and as she was reading a fourth book to Sarah (the volunteers already know Sarah and come well-prepared to stay for awhile), her friend and fellow volunteer came in and asked if she could hang out in our room, because no one else "needed" her. I was astonished. My child adores being read to, and keeps the volunteers for hours, reading book after book, then asks me to do it, or the nurses to do it once they have gone. It amazed me to realize that not all children like to be read to. Not only that, it saddened me. Books were as essential to my childhood as my toys or cartoons. Each one held a memory, a bit of magic that is what makes childhood so great. Where would I have been without Tuck Everlasting, Ramona Quimby, Age 8, or The Babysitter's Club series? When did television and toys become "cooler" than books?
I am proud that my child shares my love of books, and that each one is a friend to her as mine are to me. One of our favorite haunts is the library, which she loves, but she has the same problem that I do with it: When the two weeks are up, she cannot bear to part with "her" books. Understanding this all too well, we either check out the same books over and over, or we make a trip to the Barnes and Noble, which ranks just above the library and just underneath Disneyland on the list of Sarah's favorite places, and purchase a copy of the books she can't live without. Every time we go, I cannot help but remember frequenting the bookstore as a child with my own mother, and marveling at how she managed to keep me in books. I was a voracious reader, and three 100-page chapter books would last me a week at best, and there we went the following week, to buy three more. I think my mother, who was single and on a limited budget raising two children on her own, had an easier time keeping us clothed and shod than she had of keeping my library stocked with fresh reading material. But my love of books was something she understood as well, so she did it, and I am so grateful, because now I can share that love with Sarah.
Miss Boots at the library...
Perusing the stacks at Barnes and Noble...
Reading and walking...like mother, like daughter...
Sadly, the Barnes and Noble is always deserted enough that even when her counts aren't great, I can safely take her there, and if we go in the early morning hours when the other children are in school, we have the entire children's section to ourselves. It is a memory I want her to have, as special and magical as the ones I have from my own childhood, the smell of fresh ink on paper, the cool crispness of the air, to prevent the books from moldering, the vast array of books printed with bright and happy colors, each filled with wonder and magic and light, on any subject you can imagine. There is a whole world in there, or more accurately, many worlds just waiting to be discovered, and yet, there are so many who miss it. How sad for them.
I love that books are a source of pleasure and catharsis for us both, and that we have this to bond over. Already, I can share with her my favorite picture books, we can discover some anew, and as she gets older, I can pass down more and more. I love the fact that there will be one more bibliophile in the world, because apparently, they are a dying breed. And it is a proven fact that children who are read to on a regular basis do better in school, and carry a lifetime love of reading. If there is anything I hear about more often than the fact that Sarah has too many toys, or that we both have too many books, it's the fact that Sarah is extremely brilliant, and the smartest four year old that most people have come across. You can't argue with that.
By that logic, having too many books is like being too smart. It's impossible.
Wednesday, April 11, 2012
Fight on, Miss Boots...Day 13
Okay, so I'm about to get a little heavy on y'all. Bear with me...
There is a fellow little cancer warrior out there, Brennan. I don't know him personally, but he is battling neuroblastoma (brain tumor, thankyouverymuch, Grey's Anatomy), and things are not going well. His parents have been told there is nothing else to be done for him, so they are being faced with some very difficult and unconscionable decisions, like whether to continue IV nutrition, whether to perform CPR on him, whether or not to take him home. I not only feel for that poor little baby who is struggling to survive when the odds are all against him and the outcome probably won't be good, but if we're being honest here, which I usually am ;), my first thought is that poor mother.
I
have thought about this very thing many times, as I'm sure every other cancer mom has. We all hope that things will go the
right way, but how do you cope when they don't? How do you force
yourself to let go, when your instinct
is to fight? I feel for this mother deeply, even though I don't know
her. I pray for her strength, and for peace for her because I can only
imagine what she must be going through.
I have imagined what she must be going through, tried to wrap my mind around what I would do if the doctors told me there was nothing else to be done for her. How would I be able to fight every motherly instinct that I have and just sit back and watch my child die? As a mother, how do you sit back and do nothing? Mothering is an action verb, it's something you do. What do you do when there is nothing to be done?
I think if I were faced with this situation, I would fight as much as we could, because I believe in a benevolent God, and I believe that miracles happen every day that even the doctors can't explain. There is always a chance, even if the doctors say there isn't. When they say this, they are almost always right, but it could happen, and it isn't wrong to hope. But I would also take into account what my child wanted. Sarah tells me at least twenty times a day that she wants to go home. So, I think if it came to that, and there was nothing else to be done, and I mean ABSOLUTELY nothing, and a whole team of doctors were telling me there was nothing else to be done, I would give my baby what she wanted. I would take her home, to be with her family, and her dolls and her things.
Are you crying yet? I am, and my heart feels heavy just thinking about this very real possibility. Don't get scared for us yet, the doctor said that Sarah looks really good, and her counts jumped from 29 yesterday to 48 today. That's a big jump! At this point, what they expect is that she should still be at 0. The members of Team Bossy Boots have all told me that it is too early for engraftment (the process where the donor cells take over for her own cells in her body), but as I said, miracles happen every day that even doctors can't understand. And this little girl is special. They all are, these little angels, these cancer warriors, and while they can't all win, this little girl still has a fighting chance, and she is fighting with a vengeance. We are fighting together, the "team teamers" as she calls us (don't ask me why), Team Bossy Boots, and we will continue to fight this demon called Cancer until the bitter end, or the sweet one, whichever comes. Bring it on.
Day 13...
Okay, so things have been up and down lately, and I don't quite know where to begin.
Day before yesterday Sarah had a complete meltdown and so did I, in front of our favorite Child Life Specialist. I had asked a volunteer to come in so that I could get something to eat because as I mentioned before, Easter was pretty crazy and I hadn't eaten in 24 hours. By the time the volunteer got there, Sarah was flat-out refusing to pick up something off the floor after Ashley (our favorite Child Life Specialist) and I had both asked her to do so. Having been given more chances than usual given the situation with her pain and fatigue, she was obviously pushing the limit, so I threatened to put her in time out. She still refused, so I went to lift her onto the bed for time out, since this seems to be the only place that I can contain her successfully. Imagine my surprise and resurgent anger when she bit me!
I firmly said, "NO!", whacked her double diapered butt so she knew I meant business, and placed her on the bed, where her diaper exploded. Yeah, she had failed to mention to anyone that she had pooped. So I cleaned her up, while Ashley talked her down, placed her on my bed so that I could clean hers, and when Ashley offered to help, I lost it. As a teacher, I guess I have it in my head that the kids who act like this, especially kids with severe behavioral problems like biting and choking, are kids whose parents are either absent, negligent, or over-indulgent. I am obviously not absent, I don't feel that I am negligent, and while Sarah may be spoiled in a physical sense, I don't feel that I am overly-indulgent in the discipline department, I even feel sometimes like I am too hard on her, because I don't want her to be a brat. So, I get frustrated, I feel like a failure as a parent, I feel like I am missing something. There is obviously something I don't get, something I am missing, because if I was doing what I needed to do, she wouldn't act this way.
Both Ashley, the Child Life Specialist and Nadya, the therapist, have assured me that I am doing all of the right things, saying all of the right things, and they think this behavior is a combination of Sarah's strong-willed personality and the confinement of her situation. All she wants more than anything is to go home, to get out of here, and she says this, twenty times a day. As a human being, it is almost a form of emotional imprisonment, to want to go somewhere, and know that you can't. I am doing the best I can to teach her coping mechanisms, to teach her to breathe, to escape in her mind, and it seems to calm her. Usually, we go to the beach in our minds, we feel the air on our faces, we play in the water, look for shells on the beach, build a sand castle. I ask her to give me as many details as possible to build this fantasy. It seems to calm her. Today, after she said for the millionth time that she wanted to go home, I encouraged her to go there in her mind, the way we go to the beach. She closed her eyes, and in our minds, we went home. I asked her to give me the details, and you should have seen her face. Had I not been so caught up in the moment, I would have taken a picture, eyes closed, sweet smile of pure happiness all over her face. It's the happiest I have seen her in a long time.
So, yesterday, after the meltdown, both Ashley who was here during the episode, and my mother, who listened to me whine about it later, both thought it was a good idea for me to get out and do something for myself, which is something I have trouble doing. As I said to Nadya, the therapist, I have always been the type of person to care for others, even as a child. I have always wanted to be a mom, so I tend to mother everyone. I put everyone else's needs above my own, and this got worse as I had children, and as those children grew and their demands became more prominent. I always put myself last. But as Nadya pointed out, I have more than put in my time. I have more than put in my best efforts. She feels that no one is more deserving of a break than I am, an occasional self-indulgence, and that it is not selfish to desire that or to partake in that. This is a notion I have trouble with, but I realize that they are all right. Knowing me, however, I think they knew I would never go on my own, so Ashley arranged for a volunteer to come sit with Sarah, and gently suggested that the nail place right down the street does excellent work. My mom, who was on her way for her usual visit, thought it was an excellent idea, and presented me with lunch and a wad of cash. Nadya, who came just to check in, thirded the idea.
I went to the nail place, and tried not to fall asleep during my mani-pedi. I went to the mall after that, and bought much needed "necessities": make-up, shoes (I love, love my old Cons, but they are about ten years old, and super thrashed. I think it was time. I did buy another pair of Cons, though. I felt way super old in front of the Doc Marten display at Journeys), and some much needed scrubs and creams that were kind of pricy but worked WONDERS with my old lady hands, brought on because my hands are CONSTANTLY in water. Even the sales guy could tell that I don't take care of myself as well as I should, so I decided to splurge and do something nice for myself. This was a big step for me. Every time I go to buy or do something nice for myself, I always talk myself out of it, saying that I don't have the time, or that there is a better use for the money, or that I don't really need it, all of which is probably true on some level. But my grandmother has a saying (in Spanish), which loosely translates to something along the lines of, "If you can't buy yourself something nice once in awhile, what the @#$% are you working for?" It's not really poetic, but it's true enough. I have been told countless times that taking care of Sarah is my job. And being a stay at home mom of any kind, whether your child is sick or not, is a quite thankless job at that. (Although being given a huge hug and kiss every once in awhile and being told that I'm the best momma ever is thanks enough for me). So doing something nice for myself every once in awhile, however selfish I may feel at the time, is almost like payment for services rendered. At least, that's how I got through the day yesterday.
Today, Miss Boots seems to be feeling so much better, and we are both having a better day. They took her down a notch on her pain meds, and she is still in a good mood, pain free. That is a good sign. The doctor said that while she may develop the graft vs. host disease at any time, meaning that the new cells will realize they are not in their own environment and start to attack her body, he is very pleased with how well she is doing at the moment. If he's happy, I'm happy.
Day before yesterday Sarah had a complete meltdown and so did I, in front of our favorite Child Life Specialist. I had asked a volunteer to come in so that I could get something to eat because as I mentioned before, Easter was pretty crazy and I hadn't eaten in 24 hours. By the time the volunteer got there, Sarah was flat-out refusing to pick up something off the floor after Ashley (our favorite Child Life Specialist) and I had both asked her to do so. Having been given more chances than usual given the situation with her pain and fatigue, she was obviously pushing the limit, so I threatened to put her in time out. She still refused, so I went to lift her onto the bed for time out, since this seems to be the only place that I can contain her successfully. Imagine my surprise and resurgent anger when she bit me!
I firmly said, "NO!", whacked her double diapered butt so she knew I meant business, and placed her on the bed, where her diaper exploded. Yeah, she had failed to mention to anyone that she had pooped. So I cleaned her up, while Ashley talked her down, placed her on my bed so that I could clean hers, and when Ashley offered to help, I lost it. As a teacher, I guess I have it in my head that the kids who act like this, especially kids with severe behavioral problems like biting and choking, are kids whose parents are either absent, negligent, or over-indulgent. I am obviously not absent, I don't feel that I am negligent, and while Sarah may be spoiled in a physical sense, I don't feel that I am overly-indulgent in the discipline department, I even feel sometimes like I am too hard on her, because I don't want her to be a brat. So, I get frustrated, I feel like a failure as a parent, I feel like I am missing something. There is obviously something I don't get, something I am missing, because if I was doing what I needed to do, she wouldn't act this way.
Both Ashley, the Child Life Specialist and Nadya, the therapist, have assured me that I am doing all of the right things, saying all of the right things, and they think this behavior is a combination of Sarah's strong-willed personality and the confinement of her situation. All she wants more than anything is to go home, to get out of here, and she says this, twenty times a day. As a human being, it is almost a form of emotional imprisonment, to want to go somewhere, and know that you can't. I am doing the best I can to teach her coping mechanisms, to teach her to breathe, to escape in her mind, and it seems to calm her. Usually, we go to the beach in our minds, we feel the air on our faces, we play in the water, look for shells on the beach, build a sand castle. I ask her to give me as many details as possible to build this fantasy. It seems to calm her. Today, after she said for the millionth time that she wanted to go home, I encouraged her to go there in her mind, the way we go to the beach. She closed her eyes, and in our minds, we went home. I asked her to give me the details, and you should have seen her face. Had I not been so caught up in the moment, I would have taken a picture, eyes closed, sweet smile of pure happiness all over her face. It's the happiest I have seen her in a long time.
So, yesterday, after the meltdown, both Ashley who was here during the episode, and my mother, who listened to me whine about it later, both thought it was a good idea for me to get out and do something for myself, which is something I have trouble doing. As I said to Nadya, the therapist, I have always been the type of person to care for others, even as a child. I have always wanted to be a mom, so I tend to mother everyone. I put everyone else's needs above my own, and this got worse as I had children, and as those children grew and their demands became more prominent. I always put myself last. But as Nadya pointed out, I have more than put in my time. I have more than put in my best efforts. She feels that no one is more deserving of a break than I am, an occasional self-indulgence, and that it is not selfish to desire that or to partake in that. This is a notion I have trouble with, but I realize that they are all right. Knowing me, however, I think they knew I would never go on my own, so Ashley arranged for a volunteer to come sit with Sarah, and gently suggested that the nail place right down the street does excellent work. My mom, who was on her way for her usual visit, thought it was an excellent idea, and presented me with lunch and a wad of cash. Nadya, who came just to check in, thirded the idea.
I went to the nail place, and tried not to fall asleep during my mani-pedi. I went to the mall after that, and bought much needed "necessities": make-up, shoes (I love, love my old Cons, but they are about ten years old, and super thrashed. I think it was time. I did buy another pair of Cons, though. I felt way super old in front of the Doc Marten display at Journeys), and some much needed scrubs and creams that were kind of pricy but worked WONDERS with my old lady hands, brought on because my hands are CONSTANTLY in water. Even the sales guy could tell that I don't take care of myself as well as I should, so I decided to splurge and do something nice for myself. This was a big step for me. Every time I go to buy or do something nice for myself, I always talk myself out of it, saying that I don't have the time, or that there is a better use for the money, or that I don't really need it, all of which is probably true on some level. But my grandmother has a saying (in Spanish), which loosely translates to something along the lines of, "If you can't buy yourself something nice once in awhile, what the @#$% are you working for?" It's not really poetic, but it's true enough. I have been told countless times that taking care of Sarah is my job. And being a stay at home mom of any kind, whether your child is sick or not, is a quite thankless job at that. (Although being given a huge hug and kiss every once in awhile and being told that I'm the best momma ever is thanks enough for me). So doing something nice for myself every once in awhile, however selfish I may feel at the time, is almost like payment for services rendered. At least, that's how I got through the day yesterday.
Today, Miss Boots seems to be feeling so much better, and we are both having a better day. They took her down a notch on her pain meds, and she is still in a good mood, pain free. That is a good sign. The doctor said that while she may develop the graft vs. host disease at any time, meaning that the new cells will realize they are not in their own environment and start to attack her body, he is very pleased with how well she is doing at the moment. If he's happy, I'm happy.
Monday, April 9, 2012
Day 11...Easter Sunday...
Okay, so I guess it was too much to ask that today would be pleasant and carefree for Sarah, as much as it can be in the hospital. From the minute she woke up, which was right around the time that my mom, my grandma, my husband and my stepdaughter all walked through the door, Sarah started vomiting. Because she needed platelets and blood today, there were spots of blood in it, which freaked my mom out, of course. It would have freaked me out if I didn't already know to expect it. To add insult to injury, the doctor told me a few days ago that if Sarah's stomach pain continued that she would order a CT to make sure nothing more serious was going on, probably sometime during the week. Guess which day they picked to give Sarah that CT? Today, they picked today.. It's not enough that this is the first Easter she didn't get to dye eggs, or hunt them, or that she has to be stuck in this room. We have to add to that the fright of going down to the basement of the hospital and putting her through this giant whirring machine, but only after we force her to drink 32 oz of contrast.
Try getting your average four year old to swallow 32 oz of anything in one sitting, on a good day. On a day when Sarah is herself, it takes me over an hour to get her to drink that much contrast, and only when I cajole, plead, beg, and threaten, and sometimes (but only in desperation) bribe. Take into account that Sarah has not been herself since before her transplant 11 days ago, and that she has trouble swallowing even an ounce of water with her meds three times a day, and the fact that even meds take an hour and usually have to be given twice because she just throws them right back up, and the idea of getting her to swallow 32 oz of contrast is laughable.
Luckily for all involved, the nurses thought so, too. The nurse Sarah has had for the past three days just so happened to be in charge today, and basically, we decided to subscribe to the 'Let's not and say we did' philosophy. She flat out told Radiology that there was no way she was going to swallow the contrast, and they ended up doing it through the IV. The picture of her gut is not as clear, but they got enough of an idea to see that her bowel is distended, and that she has a great deal of gas building up. So, not that she's eating anyway, but even if she wanted to, the doctor has put her NPO, which means no food or drink by mouth except for meds (no problem, Sarah put herself NPO like a week ago) in order to give her stomach a break. A break from what I have no idea since she hasn't eaten anything, but I am not a doctor. All I know is that my baby is in a great amount of pain, that she is on an egregious amount of pain killers that either make her sleep or have her groggy and fussy all the time, and that this is not fun. At all.
God bless my poor mother, who tried her best to make today a happy day. She bought me breakfast from my favorite restaurant, which I ate for lunch because as soon as she got here, Sarah started vomiting, and then they took her down to CT. She made me my own Easter basket, which she does every year no matter how old I get. She did her best to help as much as she could. My husband was no slouch, either, and you gotta give it up to Grandma, who even resorted to flat out bribery and even a make-shift juggling act with a plastic Easter egg containing a $20 bill in an attempt to get Sarah to take her medicine. I finally got one of her favorite nurses to come help, she took it for her, no problem, and Sarah made $40 on top of all the other stuff she got today. She got a large basket from all of us; a smaller basket from just my husband; and THREE baskets from Child Life and other organizations who were handing them out, for a grand total of five baskets, plus a care package from Halos and Wings (http://www.halosandwings.org). That's a lot of stuff.
And Miss Boots' spoils were not just your garden variety 99 cents store items, mind you; in the large basket were a large Lalaloopsy doll, four minis that were sent from a facebook friend, two Lalaloopsy puzzles, a set of magnetic Lalaloopsy paper dolls, a custom made pink bunny outfit for her Lalaloopsy Littles, and various other items, none of it cheap. In the smaller basket from my husband was a Fur Real Friend Bunny that really hops and makes "bunny noises", plus some tub toys and other things. Plus three other baskets filled with goodies. Despite her bounty, when I asked Miss Boots if she had had a good Easter, she said no, because she was in so much pain. This made me sad. I thought that maybe with all of the carefully selected gifts I could distract her, give her some semblance of an Easter today. But at the end of the day, all she wants is to not be in pain.
Easter is a time for rebirth, for new beginnings. And transplant is as well. It hurt like hell when I gave birth to Sarah. That pain was nothing compared to the pain that Jesus suffered before he was resurrected. Perhaps in order to be reborn, the suffrage of pain is necessary, even vital to the process. It kills me to see my child in such pain, but I know that she is in the best possible hands, and we will get through this together, for the possibility of another life, a better life, down the road.
Some of today's happier moments:
Try getting your average four year old to swallow 32 oz of anything in one sitting, on a good day. On a day when Sarah is herself, it takes me over an hour to get her to drink that much contrast, and only when I cajole, plead, beg, and threaten, and sometimes (but only in desperation) bribe. Take into account that Sarah has not been herself since before her transplant 11 days ago, and that she has trouble swallowing even an ounce of water with her meds three times a day, and the fact that even meds take an hour and usually have to be given twice because she just throws them right back up, and the idea of getting her to swallow 32 oz of contrast is laughable.
Luckily for all involved, the nurses thought so, too. The nurse Sarah has had for the past three days just so happened to be in charge today, and basically, we decided to subscribe to the 'Let's not and say we did' philosophy. She flat out told Radiology that there was no way she was going to swallow the contrast, and they ended up doing it through the IV. The picture of her gut is not as clear, but they got enough of an idea to see that her bowel is distended, and that she has a great deal of gas building up. So, not that she's eating anyway, but even if she wanted to, the doctor has put her NPO, which means no food or drink by mouth except for meds (no problem, Sarah put herself NPO like a week ago) in order to give her stomach a break. A break from what I have no idea since she hasn't eaten anything, but I am not a doctor. All I know is that my baby is in a great amount of pain, that she is on an egregious amount of pain killers that either make her sleep or have her groggy and fussy all the time, and that this is not fun. At all.
God bless my poor mother, who tried her best to make today a happy day. She bought me breakfast from my favorite restaurant, which I ate for lunch because as soon as she got here, Sarah started vomiting, and then they took her down to CT. She made me my own Easter basket, which she does every year no matter how old I get. She did her best to help as much as she could. My husband was no slouch, either, and you gotta give it up to Grandma, who even resorted to flat out bribery and even a make-shift juggling act with a plastic Easter egg containing a $20 bill in an attempt to get Sarah to take her medicine. I finally got one of her favorite nurses to come help, she took it for her, no problem, and Sarah made $40 on top of all the other stuff she got today. She got a large basket from all of us; a smaller basket from just my husband; and THREE baskets from Child Life and other organizations who were handing them out, for a grand total of five baskets, plus a care package from Halos and Wings (http://www.halosandwings.org). That's a lot of stuff.
And Miss Boots' spoils were not just your garden variety 99 cents store items, mind you; in the large basket were a large Lalaloopsy doll, four minis that were sent from a facebook friend, two Lalaloopsy puzzles, a set of magnetic Lalaloopsy paper dolls, a custom made pink bunny outfit for her Lalaloopsy Littles, and various other items, none of it cheap. In the smaller basket from my husband was a Fur Real Friend Bunny that really hops and makes "bunny noises", plus some tub toys and other things. Plus three other baskets filled with goodies. Despite her bounty, when I asked Miss Boots if she had had a good Easter, she said no, because she was in so much pain. This made me sad. I thought that maybe with all of the carefully selected gifts I could distract her, give her some semblance of an Easter today. But at the end of the day, all she wants is to not be in pain.
Easter is a time for rebirth, for new beginnings. And transplant is as well. It hurt like hell when I gave birth to Sarah. That pain was nothing compared to the pain that Jesus suffered before he was resurrected. Perhaps in order to be reborn, the suffrage of pain is necessary, even vital to the process. It kills me to see my child in such pain, but I know that she is in the best possible hands, and we will get through this together, for the possibility of another life, a better life, down the road.
Some of today's happier moments:
 |
| Miss Boots on her way down to CT... |
Ready to go!
Bunny ears...and a lot of crap...
Grandma presenting Miss Boots with her very own fuzzy Lalaloopsy backpack...
Being silly...
My mom is going to kill me...hee hee! :)
Sunday, April 8, 2012
Day 10...Easter's Eve...
Okay, so I actually had to look at my calendar to see how many days it has been post-transplant, and I cannot believe that it has already been 10 days. For the past three days at least, Sarah has sort of been in a medically-induced coma, spending most of her hours asleep, and her few moments of consciousness in pain. It is amazing how much time you lose when you are sitting in a vacuum.
Tomorrow is Easter. I just so happened to have some pictures that my mom had printed up for Sarah's scrapbook, which Sarah then stole and refused to give back, even going so far as to sleep with them in a death-grip. Among those pictures are Sarah's second Easter, the first Easter where she was really old enough to get into anything, since her actual first Easter she was only three months old. She hunted eggs in the yard, she had her first taste of a See's chocolate bunny. Her little curls were wild all over her head, tamed occasionally by the tiniest little pigtails.
Then, because somehow the memory card for my phone got ruined when my mom tried to print up some of the 700 plus pictures I had on my phone, I was going back through my facebook photo albums to see which cell phone pictures had been preserved, and which had been tragically lost. In this search, I came across photos from last Easter. Sarah died eggs, hunted in the yard, helped me bake cookies.
This year, we will not be doing any of those things. This is the first Easter, ever, that I have been away from my family, the first Easter that we haven't been home to dye eggs, the first Easter that Sarah wasn't allowed to dye or eat her own Easter eggs. There was no Easter Beagle this year with Mike and the kids, no confetti eggs, and this is the first Easter in ten years that Mike and I haven't stayed up late eating stray Easter candy as we filled the kids' baskets. This is the first Easter of Sarah's life that I have not put together her basket myself, nor have I had a hand in buying most of the items to fill it. She will not hunt eggs in the yard this year. The Easter Bunny will be going to Ama's and Ama will be bringing her basket to the hospital. Granted, although I had only a small hand in buying items for her basket, based on what few items I could buy online, her basket will be quite large, and filled to the brim. My husband has put together a secondary basket that is just from him, because nobody, not Santa, and certainly not the Easter Bunny, can outdo Daddy in the spoilage department. Sarah came back to herself a little today, despite the egregious but necessary amount of pain medicine that she is on; I can only hope that she will manage to be as alert tomorrow.
I can let go of the fact that this is the first Easter that Sarah has not been home, the same way that I let go for her birthday and for Christmas, as long as she is happy. Still, despite my best efforts, Mommy dropped the ball. I realized too late, that I should have had a small something from the Easter Bunny for her to wake up to. She did not like the idea that she would have to wait for Ama to come, but I hope that she will sleep until Ama can get here. It surprises me that the hospital didn't have the Easter bunny come the way they did with Santa. Sarah met Santa about fourteen times here before Christmas actually came. Perhaps it's an idea that can be revisited later with my friend, Joe, who has a cancer foundation.
Tomorrow, my husband and stepdaughter, my mother and grandmother, are all coming to spend Easter here in the hospital with us. I cannot wait to see the look on Sarah's face when she sees her ginormous basket (cannot believe that the spell check did not underline the word "ginormous"). I will take pictures and post them here tomorrow. In the meantime, here are some pictures of Sarah from today, in the few brief treasured moments where my little girl came back to me for just a little while.
Tomorrow is Easter. I just so happened to have some pictures that my mom had printed up for Sarah's scrapbook, which Sarah then stole and refused to give back, even going so far as to sleep with them in a death-grip. Among those pictures are Sarah's second Easter, the first Easter where she was really old enough to get into anything, since her actual first Easter she was only three months old. She hunted eggs in the yard, she had her first taste of a See's chocolate bunny. Her little curls were wild all over her head, tamed occasionally by the tiniest little pigtails.
Then, because somehow the memory card for my phone got ruined when my mom tried to print up some of the 700 plus pictures I had on my phone, I was going back through my facebook photo albums to see which cell phone pictures had been preserved, and which had been tragically lost. In this search, I came across photos from last Easter. Sarah died eggs, hunted in the yard, helped me bake cookies.
This year, we will not be doing any of those things. This is the first Easter, ever, that I have been away from my family, the first Easter that we haven't been home to dye eggs, the first Easter that Sarah wasn't allowed to dye or eat her own Easter eggs. There was no Easter Beagle this year with Mike and the kids, no confetti eggs, and this is the first Easter in ten years that Mike and I haven't stayed up late eating stray Easter candy as we filled the kids' baskets. This is the first Easter of Sarah's life that I have not put together her basket myself, nor have I had a hand in buying most of the items to fill it. She will not hunt eggs in the yard this year. The Easter Bunny will be going to Ama's and Ama will be bringing her basket to the hospital. Granted, although I had only a small hand in buying items for her basket, based on what few items I could buy online, her basket will be quite large, and filled to the brim. My husband has put together a secondary basket that is just from him, because nobody, not Santa, and certainly not the Easter Bunny, can outdo Daddy in the spoilage department. Sarah came back to herself a little today, despite the egregious but necessary amount of pain medicine that she is on; I can only hope that she will manage to be as alert tomorrow.
I can let go of the fact that this is the first Easter that Sarah has not been home, the same way that I let go for her birthday and for Christmas, as long as she is happy. Still, despite my best efforts, Mommy dropped the ball. I realized too late, that I should have had a small something from the Easter Bunny for her to wake up to. She did not like the idea that she would have to wait for Ama to come, but I hope that she will sleep until Ama can get here. It surprises me that the hospital didn't have the Easter bunny come the way they did with Santa. Sarah met Santa about fourteen times here before Christmas actually came. Perhaps it's an idea that can be revisited later with my friend, Joe, who has a cancer foundation.
Tomorrow, my husband and stepdaughter, my mother and grandmother, are all coming to spend Easter here in the hospital with us. I cannot wait to see the look on Sarah's face when she sees her ginormous basket (cannot believe that the spell check did not underline the word "ginormous"). I will take pictures and post them here tomorrow. In the meantime, here are some pictures of Sarah from today, in the few brief treasured moments where my little girl came back to me for just a little while.
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| How Sarah has spent the last three days... |
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| My Sarah Bear-a, during her hour of consciousness this afternoon...we made good use of the hour pretending to be berry-hunting pirates searching for "trea-shaaaaa!" |
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| Playing Dr. Sarah with her Lalaloopsy doll, singing "Dr. Sarah to the Rescuuuuuue!" which she says is her theme song....that she just made up...God, I love this kid!
Watching Sarah play doctor was the highlight of my day. She mimics the nurses and doctors so exactly, it is HILARIOUS!!! She knows all of the steps for dressing changes and lab draws. She asks lots of questions about poop,. because apparently, so do they! She fishes in the pocket of her little lab coat for alcohol wipes and stickers to give to her obedient patients. At four years old, she has already decided she wants to be a nurse, or a doctor. She hasn't decided yet. Whichever she decides, I think the theme song should definitely stay, and I look forward to embarrassing her with it when she graduates from med school. It is my God-given right as a mother. If we have to give up a few holidays to give her a lifetime filled with them, so be it. If all of this is the path we have to tread to get there, bring it on.
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Thursday, April 5, 2012
Day 6...
Okay, so today started pretty much the way the rest of this week has started. Sarah woke up screaming in pain at 7 am, the nurse gives her a bolus of extra pain meds. She goes back to sleep, as do I, for the five minute intervals in which the @#$%ing TPN does not cause bubbles in the line that make the machine beep off every 30 seconds. Then, after about two hours, I noticed that this morning was different. Sarah was sweating buckets, for one thing, and for another, she was drooling blood and screaming that her mouth hurt. Further inspection proved my suspicions: the mucositis had finally spread from her gut all the way up to her mouth. The nurse went to rounds, they agreed to up Sarah's pain meds again, and Sarah has been in and out of consciousness all afternoon. When she is conscious, she is either screaming in pain or just lying there, which is almost more than I can bear. Anyone who knows my baby girl knows that this is not her. Just yesterday she was laughing and playing, and while I'll admit that like most mothers of active toddlers, there are days that I count down the very minutes until bedtime just to get a moment to sit, I would so love for today to be one of those days where I don't get to eat or even pee because this little girl has kept me so busy. I hate seeing her this way.
Today, as she was sleeping in her father's arms, I had one of those strange out-of-body experiences, where you all of a sudden see your life from the outside in, where for just a moment, it seems as though you have awakened into your life, and you can't believe it is what it is. It is very unsettling, to have moments like these, at the best of times. Today, it was downright disturbing. I am 32 years old. I will be 33 in just two months. I have a daughter, named Sarah. Sarah was never on the list of names I doodled in my notebooks as a preteen. But here she is, my Sarah. She is her own little person, unbelievably bright, unbelievably gifted, unbelievable beautiful, unbelievable stubborn, unbelievably brave. And she has cancer. I never wrote that in the notebook, either.
This is my life. This is the quantifiable sum of my existence, plus or minus a lot of details, but that's the gist of it. I am a Cancer Mom. I will do what needs to be done until there is nothing to be done, good or bad.
As of right now, she has spiked a temperature, which means they had to access her port to draw blood cultures. Thank God, she is not allergic to the new numbing cream, LMX4, like she was to the old Emla numbing cream that they switched from two and a half years too late. Because of her temperamental and teeny little port, they had to poke her twice to get it to draw, but my daughter as usual was a rock star and didn't even move, hands tucked behind her head as though she were cloud watching. Then came the Parade of Pills, the process of filling five thousand tiny little gel caps full of the liquid medications she refuses to take on their own, even though it would be so much easier on everyone involved, most of all her, but my daughter, she is a stubborn one. Have I mentioned this before? Once or twice? :) No sooner did I have all four syringes' worth of liquid meds down her throat then she proceeds to gag and throws them all right back up again. Yeah. So the nurse orders more, and round two of the Parade of Pills begins...she proceeds to throw one of the important ones right back up for the second time. Sigh. Is this really my life?
Ah, but it is. And what makes it all worth it is the adorable little monkey who leans her little bald head against my arm as I am filling my umpteenth gel cap full of liquid medicine and tells me that she loves me, and that she's sorry for throwing a fit. The little monkey that is using the app I bought to teach her to write her letters as a drawing board to make digital art at 1 am without so much as a yawn, as though it were 1 pm. This is my life. This is my child. And if I had a notebook in front of me, I would write her name in it a thousand times.
Today, as she was sleeping in her father's arms, I had one of those strange out-of-body experiences, where you all of a sudden see your life from the outside in, where for just a moment, it seems as though you have awakened into your life, and you can't believe it is what it is. It is very unsettling, to have moments like these, at the best of times. Today, it was downright disturbing. I am 32 years old. I will be 33 in just two months. I have a daughter, named Sarah. Sarah was never on the list of names I doodled in my notebooks as a preteen. But here she is, my Sarah. She is her own little person, unbelievably bright, unbelievably gifted, unbelievable beautiful, unbelievable stubborn, unbelievably brave. And she has cancer. I never wrote that in the notebook, either.
This is my life. This is the quantifiable sum of my existence, plus or minus a lot of details, but that's the gist of it. I am a Cancer Mom. I will do what needs to be done until there is nothing to be done, good or bad.
As of right now, she has spiked a temperature, which means they had to access her port to draw blood cultures. Thank God, she is not allergic to the new numbing cream, LMX4, like she was to the old Emla numbing cream that they switched from two and a half years too late. Because of her temperamental and teeny little port, they had to poke her twice to get it to draw, but my daughter as usual was a rock star and didn't even move, hands tucked behind her head as though she were cloud watching. Then came the Parade of Pills, the process of filling five thousand tiny little gel caps full of the liquid medications she refuses to take on their own, even though it would be so much easier on everyone involved, most of all her, but my daughter, she is a stubborn one. Have I mentioned this before? Once or twice? :) No sooner did I have all four syringes' worth of liquid meds down her throat then she proceeds to gag and throws them all right back up again. Yeah. So the nurse orders more, and round two of the Parade of Pills begins...she proceeds to throw one of the important ones right back up for the second time. Sigh. Is this really my life?
Ah, but it is. And what makes it all worth it is the adorable little monkey who leans her little bald head against my arm as I am filling my umpteenth gel cap full of liquid medicine and tells me that she loves me, and that she's sorry for throwing a fit. The little monkey that is using the app I bought to teach her to write her letters as a drawing board to make digital art at 1 am without so much as a yawn, as though it were 1 pm. This is my life. This is my child. And if I had a notebook in front of me, I would write her name in it a thousand times.
Tuesday, April 3, 2012
ENd of Day 4...
Okay, so I failed to blog on Days 1 through 3 because things have been a little crazy. Miss Bossy B has had intense pain and nausea, and they have had to give her boluses of extra pain meds on top of the continuous drip because she keeps waking up screaming. Yesterday, her counts were at 500, so we are still waiting for her to bottom out completely and then come back up, and as she does, the pain is only going to get worse. Her doctors think mucositis could be the problem, a side-effect of chemo that can cause sores in her mouth, but can also cause them all the way through her GI tract. There is nothing in her mouth, and we have been so careful about her oral care to prevent mouth sores, but as she continuously complains of stomach pain and she keeps throwing up, we can only assume that she has it in her stomach. The doctors tell me there is really nothing they can do except try to manage her pain.
Miss Boots herself seems to be in good spirits, as good as can be expected, anyway. She sleeps a lot more than usual because of all the pain medication, sleeping more than half the day sometimes, and then we stay awake all night. I try to sleep with her when I can, just to keep myself rested so that I can be as patient and alert as she needs me to be.
Today, she arose fairly early according to our recent schedule, in order to spend some time with her father before he had to go to work, and then in the afternoon, they increased her pain meds so she slept the rest of the day until I had to wake her at 6 pm in order to take her medication. She has been awake since then, but mellow, and at the moment, she is watching Netflix on the Nook Color from inside her princess tent on the bed, peeking her head out every once in awhile to demand that I come sit on the end of her bed. The tent is fun, and something different from the four walls she sees every day, but it is also isolating and lonely, and Miss Boots does not deal well with "alone". Every five minutes or so, which is a lifetime in Bossy Boots, she peeks her little head out and barks, "Momma! Come sit on the bed! I can't eat, I can't sleep, and I can't even get my rest, you see? Come here!" We have a brief but firm conversation about her tone, respect for her mother, and the fact that Momma is working on something, and she scrunches up her little face into the most adorable of little scowls and pokes her little bald head back into the tent. God, I love this kid!
She has been playing with her Blood Transfusion Lalaloopsy every day, and had Daddy bring in her fancy doctor's "kick" (she can't say kit) so that she can be a good nurse to her babies. She demands fresh medical supplies on a daily basis from the nursing staff, and God bless them, they are only too happy to accommodate her. We color and do puzzles, put together the daily craft that she requests from Child Life when they come to check in on her. I try to keep her as busy as I can, distract her from her pain as much as I can. It's all I can do. The doctors and nurses all say the same thing, that her pain is only going to get worse before it gets better. All we can do is wait.
Miss Boots herself seems to be in good spirits, as good as can be expected, anyway. She sleeps a lot more than usual because of all the pain medication, sleeping more than half the day sometimes, and then we stay awake all night. I try to sleep with her when I can, just to keep myself rested so that I can be as patient and alert as she needs me to be.
Today, she arose fairly early according to our recent schedule, in order to spend some time with her father before he had to go to work, and then in the afternoon, they increased her pain meds so she slept the rest of the day until I had to wake her at 6 pm in order to take her medication. She has been awake since then, but mellow, and at the moment, she is watching Netflix on the Nook Color from inside her princess tent on the bed, peeking her head out every once in awhile to demand that I come sit on the end of her bed. The tent is fun, and something different from the four walls she sees every day, but it is also isolating and lonely, and Miss Boots does not deal well with "alone". Every five minutes or so, which is a lifetime in Bossy Boots, she peeks her little head out and barks, "Momma! Come sit on the bed! I can't eat, I can't sleep, and I can't even get my rest, you see? Come here!" We have a brief but firm conversation about her tone, respect for her mother, and the fact that Momma is working on something, and she scrunches up her little face into the most adorable of little scowls and pokes her little bald head back into the tent. God, I love this kid!
Fort Bossy Boots...
Getting ready to yell at me, until she saw it was picture time! lol
She has been playing with her Blood Transfusion Lalaloopsy every day, and had Daddy bring in her fancy doctor's "kick" (she can't say kit) so that she can be a good nurse to her babies. She demands fresh medical supplies on a daily basis from the nursing staff, and God bless them, they are only too happy to accommodate her. We color and do puzzles, put together the daily craft that she requests from Child Life when they come to check in on her. I try to keep her as busy as I can, distract her from her pain as much as I can. It's all I can do. The doctors and nurses all say the same thing, that her pain is only going to get worse before it gets better. All we can do is wait.
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