There is a phenomenon that has happened to me, and I know it has happened to others, that occurs when your child is near the end or done with treatment. I'm sure that there is a technical name for it that someone far wiser than I would know, but I guess for now we can call it the "better blues". It happened to me periodically throughout Sarah's treatment, towards the end back in November before we realized that she had contracted the secondary cancer, and again after transplant. It is a period of slight depression where you deal with all sorts of morose and morbid feelings when according to others you should be ecstatic because your kid is better. And you are, for the most part. But it's a feeling that creeps in from the edges, then overwhelms you without you even noticing. It's like all of the emotions we couldn't or didn't have time to feel while we were helping them fight come rushing to the surface all at once. What everyone needs to understand is that this release of emotions is NORMAL, and that we have EVERY RIGHT to feel it, for as long as we need to. We've fucking EARNED our right to a bad day for everything we've been through with our kids!
So, I don't now and will never understand people who either blatantly or inadvertently tell us to "get over it", as though it were as simple as all that. Just "get over it", like a parking ticket or a bad day at the office, or all of the other mundane, frivolous, stupid shit they complain about on facebook on a daily basis. I'm supposed to "get over" the constant pain and suffering of my CHILD? The fact that this child is fighting for his/her life when he/she shouldn't even know what death is? Yes, we are over the moon that they're better. Of course, we are! As bad as you imagined it was for us, we wish it was that easy! But once things calm down, and we have a minute to breathe, all of the feelings that we couldn't/wouldn't/didn't have time to deal with all come rushing in at once, and we deal with it the best way we know how.
We get sad, we get pissed off, one of my beloved Cancer Moms said it best: Cancer makes us want to curse and hit things. And I honestly believe, in thinking it over for a hot second, that one of the main reasons that people want us to "get over it" is because it makes it easier for THEM. I wrote a blog awhile back on this very subject. I was feeling blue, having a hard time, and I was not blogging because I was afraid of upsetting everyone, of making them uncomfortable, because no one talks about this. They talk about how sad cancer is, about how no one should have to go through it, and they talk about the success stories, or not. But no one talks about what this process is like, for a child especially, or the mother of that child. You spend all day long feeling worthless. That's it, in a nutshell. Your sole job as a mother is to care for and protect your baby. That's pretty much it, that's what it all boils down to, and everything else is just a means to that end. So you fight within yourself all day long as you allow strangers to poke and prod and hurt your child on purpose in order to save him/her, and sometimes, if things are getting out of hand, you HELP THEM HOLD THE KID DOWN! You help them shove things down her throat, up his nose, etc. You do all of it in spite of every instinct you have as a mother that tells you to do the opposite, and there's nothing you can do about it. You can't stop it. You can't make it better. You can't protect them from this. They have no choice, and neither do you. And neither do the White Coats, which is why you're letting them do it. So you feel worthless and small that the most important job you will ever have, you cannot do. Which is a fallacy, really, because you are doing it, just differently, but it feels that way, like a constant failure.
So people who tell us to "get over it" need to understand one thing: We will NEVER get over it! We will NEVER get over our children going through the pain and suffering they have gone through! We have gone through it with them, some of us more than once, and it has become a part of who we are. You can't "get over" who you are anymore than they can "get over" being assholes for letting stupid shit like that come out of their mouths. I swear, is there no intelligent life left on this planet?. They can never and will never understand, and thank God for that!
I'm sorry if the subject makes people uncomfortable, but that says more about their weakness than ours. They don't know how to handle it, because they're just not strong enough, (they haven't had to be, like we have) so they tell us to "get over it" because it makes it easier for them, less uncomfortable. Fine. But why shouldn't we get to talk about we have been through? We SHOULD talk about it, and ALL of the feelings that it brings up, especially the negative ones. If no one was talking about it, then I should be the first, because I know it's not just me that feels this way, and even if it is, then it is all part of the process, part of MY journey, and I owe it to myself and my daughter to write it ALL down. We should not only talk about it, we should wear it like a badge of honor. We have earned it.
Tuesday, July 17, 2012
Sunday, July 15, 2012
Courageous kids...
Today, Sarah and I scooped up our friends Amanda and Julian (her boyfriend) and headed out to Oak Canyon Park to the Courageous Kids Carnival hosted by the hospital. Now, I heard "park" and I'm thinking weenies and a few carnival games, nothing fancy, just a few hours for the kids to kick around and play like they never get to in "real" life. I am pleased to report (now, mark the date on your calendar, because I will in all likelihood never say this again in my lifetime) I was WRONG!
This carnival was amazing! They had actual rides, little boats you could paddle (Amanda and I kept paddling in circles! lol) fishing, face painting, crafts, balloon animals, games, you name it, they had it! It was so amazing to see staff and families alike all enjoying themselves. For one afternoon, these kids got to be kids. It was such an amazing sight to see. My favorite part(s) of the day? Hearing Sarah and Julian chatter to each other and laugh hysterically at each other's jokes. Although cancer was what originally brought us together, no one there was even thinking about cancer. It was nice, for a single afternoon, to be able to forget about everything and just have fun, but with the people that have become our family throughout this entire process. It was such an amazing experience. I can't wait until next year! :)
As Sarah's health continues to improve, I look forward to more normalcy for her. She was so happy today, she laughed so much, and for the first time ever, she fell asleep as soon as her head hit the pillow. I have wanted this for her for so long, and I thank God that we were able to have this afternoon. I say a special prayer now for all those that weren't able to be there with us today because they were still at the hospital, fighting the good fight.
Tomorrow, we have a play date! Sarah is excited, and I am so happy that we are finally able to take steps forward. It has been such a tumultuous ride, we deserve a little of the mundane. I think I wrote once, a long time ago, about how being a cancer mom makes you appreciate the little things. Today, for the first time in her life, my daughter smelled of OUTSIDE. Grass and dirt, and sweat and sunscreen, OUTSIDE. She smelled of summer and puppies and for the first time in soooo long, slightly of peanut butter, the way she used to smell at the end of the day when she was small, before all of this. She was just a baby when all of this began. Not even two, just a little thing. Talking up a storm, but still so, so small. I can't believe how far she's come, and all of these amazing people have guided us through these dark tunnels and into the light. It is such a bittersweet feeling to be on the other side, if only for this moment. No one knows what tomorrow may bring, but for right now, I am so, so grateful.
This carnival was amazing! They had actual rides, little boats you could paddle (Amanda and I kept paddling in circles! lol) fishing, face painting, crafts, balloon animals, games, you name it, they had it! It was so amazing to see staff and families alike all enjoying themselves. For one afternoon, these kids got to be kids. It was such an amazing sight to see. My favorite part(s) of the day? Hearing Sarah and Julian chatter to each other and laugh hysterically at each other's jokes. Although cancer was what originally brought us together, no one there was even thinking about cancer. It was nice, for a single afternoon, to be able to forget about everything and just have fun, but with the people that have become our family throughout this entire process. It was such an amazing experience. I can't wait until next year! :)
As Sarah's health continues to improve, I look forward to more normalcy for her. She was so happy today, she laughed so much, and for the first time ever, she fell asleep as soon as her head hit the pillow. I have wanted this for her for so long, and I thank God that we were able to have this afternoon. I say a special prayer now for all those that weren't able to be there with us today because they were still at the hospital, fighting the good fight.
Tomorrow, we have a play date! Sarah is excited, and I am so happy that we are finally able to take steps forward. It has been such a tumultuous ride, we deserve a little of the mundane. I think I wrote once, a long time ago, about how being a cancer mom makes you appreciate the little things. Today, for the first time in her life, my daughter smelled of OUTSIDE. Grass and dirt, and sweat and sunscreen, OUTSIDE. She smelled of summer and puppies and for the first time in soooo long, slightly of peanut butter, the way she used to smell at the end of the day when she was small, before all of this. She was just a baby when all of this began. Not even two, just a little thing. Talking up a storm, but still so, so small. I can't believe how far she's come, and all of these amazing people have guided us through these dark tunnels and into the light. It is such a bittersweet feeling to be on the other side, if only for this moment. No one knows what tomorrow may bring, but for right now, I am so, so grateful.
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| My 20 month old baby at the beginning of treatment...she was so little!!!! |
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| Sarah today, trying to catch a fish with some Panda Express as bait! |
Sunday, July 8, 2012
Day 100!!!
So, as most of you know, today is Day 100! (Or yesterday was, by the time you read this...) YAAAAAAAAAAAAAAAAYYYYYYYYYY!!!!!!!!!
Okay, for those of you who just crawled out from underneath a rock, Day 100 means that Sarah's transplant is considered a success. We still have to be careful, we will always have to be careful, but she made it 100 post-transplant with no signs of GVHD, and no rejection! This is big news! WAY less meds, more normalcy for my baby!
We decided to celebrate by accepting an invitation from our dear family friend, Lupe, or as Sarah calls her, "The King Taco Lady", since she happens to own the place. She did have some slight issues with the fact that Lupe owns it, but it's called KING Taco; she wanted to know why it wasn't called Princess Taco, but I digress...
We went down around two o'clock, when it was not supposed to be busy (it was) and there were not supposed to be too many people (there were). So basically, today was a lesson in letting my Mommy guard down a little bit. A kid coughed in the booth next to us, once, and I had to fight the urge to put a mask on Sarah. Hard. But Lupe offered Mommy a beer, so we were able to get through that without too much incident! :)
Lupe had two Hello Kitty stuffed toys and a gorgeous bouquet of pink roses and purple chrysanthemums waiting at the table, and Sarah kept sniffing them, over and over.We had a pleasant meal, Sarah savored every morsel, closing her eyes and making yummy-noises, even. But of course, Mommy remembered everything but the cell phone and the camera, so all we have are a few grainy snapshots from Ama's ancient cell phone:
Actually, that's not too bad...Anywho, we had a pleasant meal, then went home, and Miss Boots, who had been talking my ear off at 4 am this morning and refused to go back to bed, fell asleep in the car and was grumpy afterward. My cousin Jenee came to bring flowers and balloons and purchase a trailer from my mom, and Sarah talked her ear off about her swing and her playhouse and her pink sand. Afterward, we decided to go to Ferrel's for ice cream.
MISTAKE! By the time we got there, there was a line down the block (I know that I am given to hyperbole, but this time, I swear, I am not exaggerating!), so we drove right on by, made a U-ey, and headed straight to our nearest Baskin Robbins!
Sarah was content enough with this, (having never been to Ferrel's and therefore not knowing the awesome yummy goodness that she was missing out on, but since all she ever orders is vanilla, I didn't feel too badly) and there was only one other customer ahead of us, so we decided to just eat there. The one other person in the shop proceeds to stare at my daughter, then at me while I clean off the table and chair with a Clorox wipe, then back at my daughter. She catches me staring at her, and looks away. I chalk it up to ignorance. Then a man enters, does the same damn thing! An older woman with her granddaughter, BOTH OF THEM, while my daughter happily eats her ice cream cone, oblivious.
I swear, what the hell is wrong with people? Children, I understand. They are curious, and small differences are confusing for them. Their intent for the most part is not to be rude. But grown ass people? And not just a second or two, I mean seriously staring at her like the flavors are tattooed to her effing forehead! Why? Are they trying to cure her cancer with their Jedi Powers? WTF???
Seriously, I would respect it more if they would just come out and ask. At least that would show that the hamster was running on the wheel somewhere in their heads. But for grown ass people to straight up stare at my daughter like she's some foreign creature just because she's bald? I mean, I'm no expert, but there are only a handful of things that cause baldness in children. ALL OF THEM ARE ILLNESSES!!!!
Believe me, the ghetto wanted to come out of the girl sooooooo badly, but I thought about my daughter, happily eating her ice cream cone, and they just aren't worth it. We spend twenty-four hours a day together. She takes her cues from me, as all girls do from their mothers (or maternal-type figures) for how to react, and having battled cancer and been afraid for most of her short little life, she trusts me even more to model for her appropriate behavior. Should I be scared, Momma? Should I be angry? Is this worrisome, or is this funny? Ill children spend most of their time out of their element, they rely on their caregivers even more than regular children for emotional cues. If I would have gotten all ghetto and gotten us kicked out of the Baskin Robbins, I not only would have sent the wrong messages to my daughter (A. That's how you react to adverse situations, and B. There is something wrong with you, or I wouldn't have to defend you. No one else's parent has to get irate in the ice cream store.) but I also, more importantly, would have ruined a very important day in her history. In our history. Because I chose to keep my cool, my daughter got to happily eat her ice cream cone in the Baskin Robbins, and I got to see the smile and not the worry on her face. These people may not have the class not to stare, but I have the class not to react.
Today was a good day. Before bed, we went over the details of the day as usual (well, I did, because she said she was too tired to talk! lol) and when I got to the detail about the gorgeous flowers that Lupe had waiting for her at the table, she said that this was her favorite part, because she has had to stay away from flowers until now. She kept smelling them over and over, a bouquet of gorgeous pink roses, just for her. The last thing Sarah said to me tonight was that she had a great time today. I am so glad, and so, so grateful to all of the wonderful people who made it possible. Here's to the beginning of more good days, for all of us.
Okay, for those of you who just crawled out from underneath a rock, Day 100 means that Sarah's transplant is considered a success. We still have to be careful, we will always have to be careful, but she made it 100 post-transplant with no signs of GVHD, and no rejection! This is big news! WAY less meds, more normalcy for my baby!
We decided to celebrate by accepting an invitation from our dear family friend, Lupe, or as Sarah calls her, "The King Taco Lady", since she happens to own the place. She did have some slight issues with the fact that Lupe owns it, but it's called KING Taco; she wanted to know why it wasn't called Princess Taco, but I digress...
We went down around two o'clock, when it was not supposed to be busy (it was) and there were not supposed to be too many people (there were). So basically, today was a lesson in letting my Mommy guard down a little bit. A kid coughed in the booth next to us, once, and I had to fight the urge to put a mask on Sarah. Hard. But Lupe offered Mommy a beer, so we were able to get through that without too much incident! :)
Lupe had two Hello Kitty stuffed toys and a gorgeous bouquet of pink roses and purple chrysanthemums waiting at the table, and Sarah kept sniffing them, over and over.We had a pleasant meal, Sarah savored every morsel, closing her eyes and making yummy-noises, even. But of course, Mommy remembered everything but the cell phone and the camera, so all we have are a few grainy snapshots from Ama's ancient cell phone:
MISTAKE! By the time we got there, there was a line down the block (I know that I am given to hyperbole, but this time, I swear, I am not exaggerating!), so we drove right on by, made a U-ey, and headed straight to our nearest Baskin Robbins!
Sarah was content enough with this, (having never been to Ferrel's and therefore not knowing the awesome yummy goodness that she was missing out on, but since all she ever orders is vanilla, I didn't feel too badly) and there was only one other customer ahead of us, so we decided to just eat there. The one other person in the shop proceeds to stare at my daughter, then at me while I clean off the table and chair with a Clorox wipe, then back at my daughter. She catches me staring at her, and looks away. I chalk it up to ignorance. Then a man enters, does the same damn thing! An older woman with her granddaughter, BOTH OF THEM, while my daughter happily eats her ice cream cone, oblivious.
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| My happy girl with her ice cream cone...there are some of the staring culprits in the background...get em! lol |
I swear, what the hell is wrong with people? Children, I understand. They are curious, and small differences are confusing for them. Their intent for the most part is not to be rude. But grown ass people? And not just a second or two, I mean seriously staring at her like the flavors are tattooed to her effing forehead! Why? Are they trying to cure her cancer with their Jedi Powers? WTF???
Seriously, I would respect it more if they would just come out and ask. At least that would show that the hamster was running on the wheel somewhere in their heads. But for grown ass people to straight up stare at my daughter like she's some foreign creature just because she's bald? I mean, I'm no expert, but there are only a handful of things that cause baldness in children. ALL OF THEM ARE ILLNESSES!!!!
Believe me, the ghetto wanted to come out of the girl sooooooo badly, but I thought about my daughter, happily eating her ice cream cone, and they just aren't worth it. We spend twenty-four hours a day together. She takes her cues from me, as all girls do from their mothers (or maternal-type figures) for how to react, and having battled cancer and been afraid for most of her short little life, she trusts me even more to model for her appropriate behavior. Should I be scared, Momma? Should I be angry? Is this worrisome, or is this funny? Ill children spend most of their time out of their element, they rely on their caregivers even more than regular children for emotional cues. If I would have gotten all ghetto and gotten us kicked out of the Baskin Robbins, I not only would have sent the wrong messages to my daughter (A. That's how you react to adverse situations, and B. There is something wrong with you, or I wouldn't have to defend you. No one else's parent has to get irate in the ice cream store.) but I also, more importantly, would have ruined a very important day in her history. In our history. Because I chose to keep my cool, my daughter got to happily eat her ice cream cone in the Baskin Robbins, and I got to see the smile and not the worry on her face. These people may not have the class not to stare, but I have the class not to react.
Today was a good day. Before bed, we went over the details of the day as usual (well, I did, because she said she was too tired to talk! lol) and when I got to the detail about the gorgeous flowers that Lupe had waiting for her at the table, she said that this was her favorite part, because she has had to stay away from flowers until now. She kept smelling them over and over, a bouquet of gorgeous pink roses, just for her. The last thing Sarah said to me tonight was that she had a great time today. I am so glad, and so, so grateful to all of the wonderful people who made it possible. Here's to the beginning of more good days, for all of us.
Friday, July 6, 2012
Day 99...the day before the big day...
Today is Day 99...which means tomorrow is Day 100, the Big Day. Tomorrow, Sarah will be considered more or less "Out of the woods". As of tomorrow, the transplant will be considered a success. She worried me a bit there with some mysterious pinprick type bumps on her inner thigh and on her cheeks, one of the warning signs I am supposed to be on the lookout for in terms of GVHD, but they were gone by this morning, thank God! Azrael is here with us, and he will be here tomorrow for her big day. I am glad. They are so sweet together, they never argue. He dotes on her the way a big brother should, and she adores him. She couldn't be happier that he is here, and neither could I. Tomorrow, Sarah will be treated to some King Taco, her absolute favorite, after 100 long days! Yes, technically we cheated with the fast food, but tomorrow will be special nonetheless because she is getting her own private table, and anything she wants on the menu. Rest assured, I will be taking pics! :)
Today was a simple day, Azrael came to PT with us, played with Sarah all the way there and all the way home, watched movies and played all afternoon once we got back, and it makes me so happy that he's here. I have precious little time before he starts to hate me. :)
As for now, I am enjoying his company as much as Sarah is, and I am off to get them both showered, and into bed with a movie, since I probably have no hope of getting them to go to sleep anytime soon.
I should be writing something momentous right now, about the magnitude of this day, of the 100 days that have passed, but the truth is, it passed by in an instant. Despite the broken bones, emergency line removals, fasts and fast food contraband, skin issues and unwanted hair issues, potty training (again), sleep training, and just all around home training, I hardly felt it. I went ahead, and I did what had to be done for my daughter's sake as always. Was it always a breeze? No. Hell no. Any mother will tell you that. You have your good days, your bad days, and your "What the hell is the matter with this kid???" days. But you get through it, one way or another, and you savor it. You create indelible impressions in your mind, portraits you will forever see in your mind when you think of your child. Sarah, four years old, standing outside the bathroom door with a flower in her left hand, her right arm in a sling too large for her and already dirty after only days of use. "Are you done yet?" Ear to ear monkey grin. Her hair is starting to curl. This is the way I will remember her. Little and sweet and bossy as ever. My monkey girl. Little Miss Bossy Boots on Day 99.
Today was a simple day, Azrael came to PT with us, played with Sarah all the way there and all the way home, watched movies and played all afternoon once we got back, and it makes me so happy that he's here. I have precious little time before he starts to hate me. :)
As for now, I am enjoying his company as much as Sarah is, and I am off to get them both showered, and into bed with a movie, since I probably have no hope of getting them to go to sleep anytime soon.
I should be writing something momentous right now, about the magnitude of this day, of the 100 days that have passed, but the truth is, it passed by in an instant. Despite the broken bones, emergency line removals, fasts and fast food contraband, skin issues and unwanted hair issues, potty training (again), sleep training, and just all around home training, I hardly felt it. I went ahead, and I did what had to be done for my daughter's sake as always. Was it always a breeze? No. Hell no. Any mother will tell you that. You have your good days, your bad days, and your "What the hell is the matter with this kid???" days. But you get through it, one way or another, and you savor it. You create indelible impressions in your mind, portraits you will forever see in your mind when you think of your child. Sarah, four years old, standing outside the bathroom door with a flower in her left hand, her right arm in a sling too large for her and already dirty after only days of use. "Are you done yet?" Ear to ear monkey grin. Her hair is starting to curl. This is the way I will remember her. Little and sweet and bossy as ever. My monkey girl. Little Miss Bossy Boots on Day 99.
Monday, July 2, 2012
Words are not enough...
This is the letter I have just penned to the bone marrow donor. I have been putting off this letter for awhile, consciously or subconsciously, I don't know, and the only reason I can think of, besides that this child keeps my hands full at all times, is that I didn't have the words to express what a gift this man has given me. What could I possibly say that could even come close to the gratitude I feel every day? How could ink on paper possibly convey the magnitude of what he has done for her, for me, for our family and everyone who loves this child? But it needed to be done, this man deserves to know how grateful we are, insipid or not, so I bit the bullet and wrote this (try not to laugh):
July 1, 2012
Dear Sir:
My name is Adriana Gonzalez, and my daughter is Sarah
Elizabeth Gomez. She is four and a half years old at the date this letter was
written, and she was the recipient of your bone marrow donation on March 29,
2012. I cannot express to you in words how much this simple act meant to our
family, but in order for you to understand, I would like to provide a little
background about our family, Sarah especially. I want you to know how truly
miraculous and amazing it was that you did this for our family.
I lost three babies before Sarah came. I have wanted a child
my entire life, and this was devastating to me. I had three stepchildren, but I
desperately wanted a child of my own. Then Sarah came, and for the first year
of her life, she was perfect. She was perfectly healthy, she was beautiful,
smart, everything I could have ever asked for in a child, and so much more. We
had one perfect year. Then, she had a febrile seizure (a seizure brought on by
a sudden spike in her body temperature) at 13 months, and her health started to
steadily decline from there. At 20 months, after a nasty tumble caused a
hairline fracture in her hip, a fever I couldn’t get rid after a month, and a
rock star pediatrician who refused to do anything about it and told me I was
over-mothering, I took Sarah to the ER, they ran some tests, sent us to the
Children’s Hospital of Orange County, and they confirmed that Sarah had ALL, or
Acute Lymphoblastic Leukemia. Basically, that means that her blood is producing
too many white cells, and the ones that are being produced are immature and not
able to do their job properly, which is to fight infection. She received two
years of chemo, and many hardships due to side effects. She was in the hospital
every other month due to a fever, because her counts were low. I had to quit my
job to care for Sarah (I am a grade-school teacher), and things were tough
financially.
We got through it, and after two years of chemo, we could
see the light at the end of the tunnel. She was supposed to be done in January.
Imagine our complete heartbreak when the doctor called me in December (on my
mother’s birthday, no less!) to tell me that Sarah had contracted a secondary
cancer, AML (Acute Myeloid Leukemia). Basically, this cancer is much more aggressive,
much harder to treat, and has a much lower survival rate, 50% as opposed to the
80-90% with ALL for Sarah’s age group. We were scheduled to come in to the
hospital immediately for three very aggressive rounds of chemo, a month each,
far more excruciating than anything she had been through in the past two years.
At the end of the third round, Sarah was to receive a bone marrow transplant,
if we could find a match for her, which the doctor said was not very likely
because of her heritage and her family structure. My husband is Native
American, and I am Mexican-American. Sarah has three half siblings, but she is
my only child with my husband, and a natural sibling is the best possible
chance for a match. My husband was close, but not close enough. The doctor said
that we were probably going to have to resort to using cord blood for Sarah’s
transplant, because the chances of finding a perfect match in a non-related
donor were one in a million. He said we had a better chance of winning the
lottery.
You, sir, are that winning lottery ticket! You were a
perfect match for our baby girl, who is strong, and vibrant, bossy, smart and
so funny. She is so advanced for her age, and well-loved by everyone she meets.
She is bossy, but well-mannered and kind-hearted. She is mischievous and
playful, she likes to tease. Lalaloopsy dolls are her life. She likes movies
and music, and books. LOTS of books! Her favorite color is pink. She has so
much energy! The hardest thing in the world was to just see her lying there in
a hospital bed, and you gave us our little girl back. These words sound so
insipid, sir. They are not enough to tell you the gift that you have given me.
Through this process, I have seen children not make it. Thanks to you, good
sir, for saving me from that pain, for giving my daughter another chance at a
real, normal life.
I have heard that there are donors who decide against
donation at the last minute, that bow out once they are called upon. Thank you,
thank you, thank you, a million times over for not bowing out. You were a 100%
perfect match for our daughter, and your marrow fit perfectly within her veins,
so much so, that she even got out of the hospital a month early, and has had no
complications since! (Despite the fact that she fell out of bed the other day
and broke her collar bone! This child keeps me on my toes, that’s for sure!)
You saved Sarah’s life, sir. You saved my life. You saved my
heart, you saved my soul, because you saved this little girl.
I have enclosed some pictures of Sarah, so that you can see
for yourself the amazing thing that you have done. I understand completely if
you are opposed to this, but I would be honored for the opportunity to thank
you in person, and I would love for you to meet Sarah. All I know of you is
that you are male. They wouldn’t tell me anything else, and they said that the
only way I could communicate with you is to forward a letter through our case
coordinator, so I am doing so now. My information is all on the heading to this
letter, and should you choose to communicate, I would be honored to receive
your missive. Should you not, then please know how eternally grateful we are as
a family that you have given our Sarah back to us, and that you are included in
our nightly prayers, and in our hearts forever.
Sincerely,
Adriana Gonzalez, grateful mother of
Sarah Gomez, age 4 1/2
Sunday, July 1, 2012
Day 94...and Farewell to one of our own...
It is with great sadness that I report here the passing of one of our own, a fellow cancer warrior, Betsy. Though we only knew Betsy a short while, her spirit and her strength have inspired us all, and it weighs on all of our hearts that she is no longer in the world. I cannot imagine her parents' suffering. You know it's coming, you can feel it's drawing close, but I can only imagine that nothing can prepare you for that final moment, when your child draws his/her last breath. It is unnatural. It is unimaginable. It is unconscionable, and yet, it happens every day. It could have been any one of us.
I am saddened by Betsy's passing, but I am glad that her suffering has ended, and my prayers go out to her family that they may find strength to get through this difficult time and beyond. I don't think it ever gets any easier. I think you just find a way to survive. You take comfort where you can.
I had a perfect day with my daughter and mother, despite Sarah's little broken wing and the pain that ensues every time I move her or hold her in the wrong way. We shopped, enacted a covert, tag-team operation to purchase Lalaloopsy items for Christmas without Sarah noticing, and then came home to play in the yard a little, until Sarah fell and scraped her knees. I gave her a bath, dressed her, and we made popcorn and watched the Lorax, then had a little chat and did some couch-dancing to the kitschy 60's/70's tune that was playing over the DVD menu. We did meds, I made her bed, she sealed her new Happy Napper (she is ever so happy. She has been wanting one of those things for years) and laid down on it to go to sleep. A good day, overall.
Here I am, after a wonderful day of shopping with my mom and daughter, and then playing in the yard with Sarah's sand and water table, newly filled with pink sand (That's right. You read correctly. PINK sand, thanks, Crayola! You made my daughter's millenium! And only $7 for a 20 lb. bag at Walmart? Yes, please!) rushing through Sarah's bedtime story because I'm tired and I have a million things left to do to prepare for a very busy day tomorrow. Cancer gives you enough perspective to realize that life is short and you should enjoy every moment, but even less time to enjoy than everyone else has, because there is so much more to deal with!
Then, Betsy crossed my mind. I am rushing through this moment with my daughter, and somewhere, Betsy's family is wishing they had a moment like this, just one more time. And it could have been me, it could still be me, wishing that I had slowed down, done all the voices, surreptitiously stolen glances at my daughter to catch her reactions, engrave it all into my memory. And I do this, on occasion, but I should be doing it always, even when I'm tired. Because you never know which story will be the last one.
I am saddened by Betsy's passing, but I am glad that her suffering has ended, and my prayers go out to her family that they may find strength to get through this difficult time and beyond. I don't think it ever gets any easier. I think you just find a way to survive. You take comfort where you can.
I had a perfect day with my daughter and mother, despite Sarah's little broken wing and the pain that ensues every time I move her or hold her in the wrong way. We shopped, enacted a covert, tag-team operation to purchase Lalaloopsy items for Christmas without Sarah noticing, and then came home to play in the yard a little, until Sarah fell and scraped her knees. I gave her a bath, dressed her, and we made popcorn and watched the Lorax, then had a little chat and did some couch-dancing to the kitschy 60's/70's tune that was playing over the DVD menu. We did meds, I made her bed, she sealed her new Happy Napper (she is ever so happy. She has been wanting one of those things for years) and laid down on it to go to sleep. A good day, overall.
Here I am, after a wonderful day of shopping with my mom and daughter, and then playing in the yard with Sarah's sand and water table, newly filled with pink sand (That's right. You read correctly. PINK sand, thanks, Crayola! You made my daughter's millenium! And only $7 for a 20 lb. bag at Walmart? Yes, please!) rushing through Sarah's bedtime story because I'm tired and I have a million things left to do to prepare for a very busy day tomorrow. Cancer gives you enough perspective to realize that life is short and you should enjoy every moment, but even less time to enjoy than everyone else has, because there is so much more to deal with!
Then, Betsy crossed my mind. I am rushing through this moment with my daughter, and somewhere, Betsy's family is wishing they had a moment like this, just one more time. And it could have been me, it could still be me, wishing that I had slowed down, done all the voices, surreptitiously stolen glances at my daughter to catch her reactions, engrave it all into my memory. And I do this, on occasion, but I should be doing it always, even when I'm tired. Because you never know which story will be the last one.
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| RIP Betsy...we love you! |
Friday, June 29, 2012
Day 91...but mostly a long-winded account of Day 90
Okay, so I was totally going to post yesterday since it was Day 90, but yesterday was a non-stop whirlwind, and by the time I got home, got the girl-child to bed and got a minute to myself, I was too exhausted to keep my eyes open, much less blog. You would probably be thankful I waited until today when I've had a whole five hours of sleep under my belt to blog if you had seen the garbled, non-sensical mess that was my brain last night. I could barely keep my eyes open talking to my grandmother about how the day went.
So, here goes, my slightly less addled account of Day 90!
Why are the numbers so important you ask, throng of new readers who were referred by a friend because my blog is so amazing? (Okay, I may still be a little tired) Transplant Day is Day 0. Every day after that counts upward towards Day 100, which, if we can make it that far without complications, will mean that the transplant was a success, and she will technically be out of the woods. That day for us is 9 days from now, on July 7. That is the day that she can have fast food again (although I will tell you why I am a bad mom in a second), when we can start venturing out into the world again (with caution, of course), and when we can breathe a little easier each day that she makes it past without something going wrong. So Day 100 is a pretty big day in BMT land, and we are fast approaching upon it.
Anywho, I haven't blogged much (or at all) since we've been home because I have been extremely busy trying to settle Miss Boots back into a routine and to settle her back into civilization, since her behavior indicates that she has lost her freaking mind sometimes. Tantrums times ten, hitting, biting, sleep issues, potty training (which we finally have under control, thank GOD!!!) plus trying to keep up on all of the cleaning, dusting and laundry that needs to be done, I am working the equivalent of two full time jobs, at least. And it feels like four. For all those who think I sit around and eat bon bons and watch Dr. Phil all day, or that I should be doing something more to contribute financially, well, I'm trying to find a polite yet effective way to convey the general idea of "kiss my ass", but I guess there isn't one...
Yesterday was just such a day where I think I definitely earned my keep. Day before yesterday, on Day 89, Sarah had a BMT clinic appointment, nothing unusual, standard routine. The night before that, I was flushing her lines and I noticed some small pinholes in the bottom of her red lumen. I went ahead and flushed it anyway to see if it was leaking, and it wasn't. But just to be sure, I called the exchange anyway, and within minutes, the on-call oncologist called me back. I explained the situation, and she told me that it could probably wait until clinic the next day, so we kept our usual appointment. I promptly explained to the nurse, nurse practitioner and the doctor that her red lumen was damaged, and they decided that while there is still necessity for a central line, Sarah is in the unique position of having two lines, which she no longer needs since she is getting better. So, as the broviac was going to come out soon anyway, and they can get what they need from her port-a-cath, it didn't make sense to repair the broviac when it would just be coming out within a month or so. So they decided to take it out right away. The doctor gave me a choice to take it out then and there, or to wait until the following day (yesterday), because we would have to be admitted since it would be a surgical procedure and it might take a couple of days to squeeze us onto the surgery board since it was non-emergent. So, I opted to go home so that I could pack our things.
"Packing light" for "just a few days" for Miss Boots and I consisted of: A small, fifteen inch duffle bag with clothes for her and I; a small, twelve inch toiletry bag with necessities for her and I; Her large, fifteen inch diaper bag, with necessities for her; a small, ten inch case containing her portable DVD player, DVD's and connection cables; Small, twelve inch Disney Princess duffle bag containing Sarah's toys (about three Lalaloopsies, Castles the Unicorn, who has been present at every single procedure and hospital stay and was not about to be left out now, and her Lalaloopsy magnetic paper dolls, Nintendo DS, crayon roll, etc.); and my purse. Thank God for Graco strollers, which can withstand four years of abuse, being laden like a pack mule with tons of "necessary" crap and still being sturdy enough that we have no need of a new one!
I get a confirmation call from the hospital telling me to be there at 10 am, and alerting me to the fact that they offer free valet parking for the parents (three years later when I have been hauling all of Sarah's stuff in the Graco all the way around the block from the parking structure to the front of the hospital), and I am ready.
Sarah manages to get to bed on time, but stays up for another hour because she is scared, and wants to know step by step what is going to happen to her. So I give her the play-by-play, assure her that she is perfectly safe and that tomorrow is a happy day, because soon she will be able to take a real bath with no Press-n-Seal and swim and there will be no more line flushing, no more home dressing changes, which means less for me to keep up with and less stress for me, because Sarah howls all of the way through a dressing change, which is very distracting! I finally get her to sleep, finish up the packing, and by the time I have a minute to breathe, now I can't sleep because she has me worrying. What if she's nervous for a reason, my happy-go-lucky little girl who worries about nothing? Sarah is fearless. She's been watching Coraline since she was two. She has been fighting cancer since before she was two. She looks me straight in the eye and deliberately defies me on a daily basis. This child fears nothing but the dark and the vaccuum cleaner (Yeah, I can't figure it out, either...), so what if there is something to be worried about? What if she knows something that I don't?
I know the procedure is routine and simple, even more so because the broviac is still new, having just been placed in December, and she still had a stitch in it from when they put it in, so it was a simple matter to just reopen the stitch and pull the line right out. I know that the surgeons are world-class, and that they do this every day. I know she could not be in better hands. I know that this is a good thing, because it is one step closer to normalcy, to a better life for my daughter and myself, but still I manage to worry myself halfway through the night until the wee hours of the morning. I manage to haul myself out of bed at 7:30, when I didn't go to sleep until nearly 3, shower, dress, (changed my outfit three times, then went back to the first one I put on, jeans, cons and my lucky Tori Amos t-shirt that I have worn to every procedure Sarah has ever had) get Sarah up, dressed and the car loaded. By 9:15 we were on our way. Cutting it a little close, but registration is never on time at the hospital, anyway.
Sarah was NPO, which is an acronym for some latin phrase meaning "Don't feed this kid because we're going to drug her and we don't want food getting in the way". So I didn't feed her breakfast, and I didn't eat myself, because as a mother, I just can't. Even when food is available and allowed, I feed my daughter first. I serve her plate, then I serve myself. I don't eat unless and until she does, which means that on procedure days when she is NPO, I don't eat until after procedure because she can't eat until then. Save that little nugget of wisdom for later.
We get to the hospital in record time, because there's no traffic! Yes! Getting off to an auspicious start! I'm feeling better about this. Sarah seems to be in good spirits, which I have managed to get her into while I am driving, despite a minor setback with her complete emotional breakdown because Daddy couldn't get the day off to come with. That man works way too hard and doesn't get paid enough. So, I manage to work my way past the "pissed off" because I do not need her in this frame of mind when she is about to go in for surgery, and manage to console my daughter with soothing words, and distractions, and promises of all that is to come (Disneyland with no broviac! Real baths where she'll get to play until her fingers prune because I won't have to worry about her Press-n-Seal coming off and getting her dressing wet! A surprise waiting for her when she comes out of surgery, because I always go to the gift shop and buy her a new friend whenever she goes in for a procedure!). This gets her smiling, and just for good measure, I throw on her Rapunzel CD, because while my iPod keeps me awake and helps to get my head in the game, I think she needs her music more than I do at this point. Works like a charm, especially when I sing along. She is distracted and happy, talking and laughing, and even declares that it is time to make chicken noises when I hit the apex of the turn on the freeway off ramp. This is always the designated spot to make chicken noises, I am not exactly certain as to why, but who am I to argue with a toddler's logic? If Miss Bossy Boots declares that it's time to make chicken noises, then it just is.
I drive around to the front of the hospital, the promise of convenient free valet parking dangling before me. I think I literally heard a record screech to a halt in my head when I see the front driveway full of cars, and the valets standing around talking. I wait, figuring maybe one or more of them will make a move soon to get these cars to the parking structure, but no, they continue on with their conversation and I am now blocking traffic with 10:00 breathing down my neck, so with a mental curse, I drive around the block to the parking structure and park the damn car myself,. I sit Sarah in her stroller, torture the Graco further by weighing it down with way too much crap, and walk the block and half around the building to the front of the hospital, where the driveway is still full of cars and the valets are still chatting amiably. Whatever, I've done it a million other times, what's one more?
I get into the lobby and there is only one person ahead of me. Okay, good. we're only slightly tardy thanks to the chatty valets, and we can still get this done. I let them know we're here, they make me a pass, (because semi-permanent hospital passes are another new improvement the hospital has made three years too late) and ask me to wait. Sigh.
Luckily, I barely have time to log in to Facebook when our name is called. We register, which goes by quickly because the guy already knows us, so I get my own jovial chat while he clicks off the questions in the computer with record speed. We are walked up to our room, told immediately that we will be getting a roommate. Double sigh. Rarely do we get a roommate we actually like, and this room is the size of a shoebox for one patient, let alone two. The nurse is one we've had before, and she is extremely compassionate and just plain damn good at her job, so she informs me right away that she has no idea what time they are going to get her in, but she understands that she hasn't eaten so she will find out right away. I take her to the playroom while we're waiting to hear, where she meets a little friend, Gracianne. Gracianne does not have cancer, (sometimes they put patients with other blood disorders or autoimmune diseases on the cancer floor), so she has the most gorgeous blond curls you have ever seen in your life, and she gave Miss Boots a run for her money in the sass department. Needless to say, they were instant friends.
We went back to the room when the playroom closed, and met our new roommate, Bella. Bella is 8, and her brother Liam is younger, although I'm not sure how old exactly. Sarah commandeered Liam into playing with her, which he happily did because he thought she was a boy. The Lalaloopsies didn't tip him off, apparently, but nor did they deter him when his mother informed him that she was, indeed, a girl. They played Candyland, then played "mailman" with the cards from Candyland when they got bored, which consisted of them "delivering" the cards back and forth, and then when they got bored with that, Bella and Sarah starting "delivering" the "mail" on top of Liam's head, which he laughed off good-naturedly. More new friends!
The nurse informs me that surgery can't take her in until five, and we are both starving, but she is so distracted with her new friends that she doesn't seem to notice or care that she hasn't eaten all day. Sarah looks sort of mournful when they bring in Bella's lunch, but I explain that we will eat as soon as she is out of procedure, and she doesn't complain. My poor baby should not be used to this, but she is. The nurse warns me that transport has a habit of arriving early, so I promise to have Sarah ready by four, costing her another visit to the playroom with Bella and Liam, but surprisingly, she doesn't throw a fit. I have her ready and in her hospital gown by 3:30, and damned if transport doesn't show up at 4:00 on the nose! We head down there, the nurse piles a ridiculous (but necessary) amount of blankets on top of both of us to combat the arctic temperature in the room, and we make light chit chat as we wait for the doctor to arrive. The anesthesiologist comes in, introduces himself, and with ninja-like precision, gives Sarah the Versed without either of us noticing. I realize in that moment that God has granted us a small miracle already. That is the first time ever, EVER! that Sarah was sedated and didn't scream her head off through the entire thing. She was alert and awake enough to tell me that they had already given her the medication, but I didn't believe her because she seemed relaxed, but not out of it. She was still herself, she was still my baby, there was still light in her eyes. That is the hardest part for me on procedure days, watching the light go out in her eyes.
She goes in by herself, no favorite nurse, no favorite child life specialist by her side, my brave girl, I kiss her goodbye, and she smiles at me. I settle into one of the sublimely comfortable purple leather recliners, prop my feet up on the ottoman, put on my iPod (I almost said Walkman, this is how tired I am! I think it's 1989!) with noise cancelling ear buds, and like it knows that I need this, the iPod pulls all of my favorites up on the random shuffle, everything I need to hear in that moment. I try to read on the Nook, but my brain is far too tired to concentrate, so I play Bejeweled 2 and try not to fall asleep in the ridiculously comfortable supple purple leather chair. Where do I get one of these, seriously? It must cost thousands, this chair, but I don't care, I so want one for my next birthday!
I am halfway between awake and asleep, losing at Bejeweled 2 because I am too exhausted to even match up three like stones correctly, apparently, and the surgeon comes back within ten minutes telling me the procedure is done, and it went beautifully. My phone is buzzing with text messages and email notifications, and I manage to answer one phone call from my husband before my phone dies on me. Thank God for my Nook and free hospital wi-fi, because I was able to update my facebook status to let everyone know so no one would worry. The doctor said they would come get me to go back to recovery within fifteen minutes. Fifteen minutes turn into thirty, and while I am immensely enjoying the comfort of this chair and my music and my e-reader, I start to worry that maybe I misunderstood, maybe I am so tired that I did not understand what the doctor said, maybe I was supposed to follow him out, and I didn't. What if they take her up to the room without me, and she's calling for me and I'm not there? What if they're looking for me, and I'm sitting in this chair and they can't get a hold of me because my cell phone is dead?
I am now sufficiently worried enough to reluctantly hoist my exhausted ass out of the wonderful purple chair and go inquire. The male nurse calls back to the recovery room for me, informs me that they have only just removed her breathing tube, and that he will walk me back there. In other words, I worried for nothing and I could have enjoyed another few moments of bliss in the purple chair. See what trouble my mind can cause?
They take me back, and she is still asleep. She sleeps for a good twenty minutes. She awakens, rubs her eyes, smiles at me like it's any other morning, then remembers where she is and peeks underneath her purple hospital gown to look for her broviac, which is no longer there. In it's place is a small square piece of Steri-strip, with a small amount of blood on it. She is free.
She gains her bearings a bit more, asks me if she can play a game on "Nookie" as she calls it, because everything has a name, and it usually has an "ie" at the end. My phone is Phonie, her dvd player is DVD Playerie, there is Stevie the TV, and Nookie. I hand it over, showing her a new free children's book I downloaded for her while I was basking in the purple chair. She was sufficiently entertained and happy. The nurse asked her directly if she had any "owies", which Sarah understands to be any pain, big or small, while the nurses mainly take it to mean big hurts. Sarah has been trained to give an honest yet respectful response when asked a direct question, so she told the nurse that yes, her chest hurt where they took the broviac out. She was not crying or screaming. She stated this matter-of-factly, then went back to playing with the Nook. The nurse gave her a shot of morphine. Sarah was more relaxed afterward, but continued to play a counting game on the Nook, and with precision was able to do it correctly.
We get back to the room, where we are given a warm welcome by our new friends, and informed by the nurse that there are no orders for when to send us home, and that there is now a hold-up because she felt enough pain to be given morphine. I explained to the nurse that I didn't think it was enough to keep us here, and she said that I should reiterate that to the night nurse because it was change of shift, and the nurse would take my word for it, being the parent. I agreed, and looked at the clock, fully intending to order Sarah some food, realizing that we had arrived ten minutes too late to order anything from downstairs,and my daughter had now gone a full 24 hours without eating or drinking anything. She starts to cry, my heart breaks. I try to console her, our new friends offer a variety of food, which she refuses. I manage to placate her with some fruit loops and chocolate milk from the kitchen, and within minutes she has wolfed it down (poor baby!) and is happily playing stuffed animals with Bella. Now, Bella is highly imaginative, witty, and HILARIOUS, not to mention that right around then she has a major case of the sillies, so the girls had a wonderful time playing, and I must say, it was just as enjoyable for us moms to watch. So much so, that even after we were discharged, Sarah wanted to stay and play!
Okay, here comes the part where I'm a bad mom...before I get to the part where I'm an even worse mom...
We had both gone over 24 hours at this point without solid food or liquids. We were starving, literally. So, even though Sarah technically can't have fast food for another nine days, I broke down and we had Jack in the Box. Let me tell you, the look on Sarah's face was priceless, and I must say, I never thought that I would miss fast food as much as I did. Those were the best curly fries, everrrrrrr......Ten days too early, but maybe the fact that they were forbidden fries made them better, I don't know...
Okay, so I get home, fed, satiated, exhausted, but happy...it has been a long, but overall a good day. My body clock is still off, so even though I am running on fumes, I drift off somewhere around 2 into a dreamless slumber...I swear it felt like I had closed my eyes for mere seconds, before I hear a loud thud, and my baby screaming for me, but not in the spoiled brat way that she knows is annoying and therefore will get me to come in the room faster. This was for real, yo. She was seriously in pain. I get into the room, and she's lying flat on her belly, can't get up. I figure she's still half asleep, so I pick her up, check her over, she seems fine outwardly, and I am able to calm her down and soothe her back to sleep, so I think she's fine. Three hours later, when she wakes up (and I have been writing this blog for three hours), I go to lift her up and she howls in pain. Not good. She kicks up a fuss, cries inconsolably with my mom while I'm on the phone with the doctor because she doesn't want to go back to the hospital. I throw on clothes, shoes, put fresh pj's on Sarah, load the bags I haven't had a chance to unpack from last night, just in case we have to stay, and we are off. She is chatting jovially with me the whole way, I am a nervous wreck, trying not to cry and frighten her. Something is broken, I know it. I can feel it.
We get there, and they usher us in in record time, the ER is surprisingly empty. We see a doctor within an hour, get x-rayed within two hours, get results within another hour, discharged an hour after that. She has a hairline fracture on her right collarbone, has to wear a sling for two to three weeks, or until the ortho consult tells us she can stop wearing it.
She doesn't really like it, and I had to pin it shut so she would keep her arm inside, so I am looking into ways to make this more palatable for her. I made a pink sling for her dollie, the one I made to look like a bald Lalaloopsy doll that she named Sarah and drags with her everywhere. I clipped one of her bows to her sling. I am trying to figure out ways to decorate this sling, maybe make her a prettier one if I can figure it out. She is already getting so self-conscious about everything she has to go through; at four and a half, her body image sucks, and she doesn't like herself. She actually told me this morning that she was sorry, that she "always does this", referring to the fact that she had a hairline fracture in her hip at 20 months, which was how we diagnosed her leukemia in the first place. She thinks this is her fault, and no matter how many times I tell her it isn't, I'm never quite convinced that she believes me.
So here I am, two days with minimal sleep, minimal food, and all I want is a shower and big fat glass of wine. I have had a tension headache all day, and my neck and shoulders are throbbing they are so tense. Where does that leave us? Glad that it's over and hoping for a better and far less eventful day tomorrow.With this child, it probably won't happen because every day is an adventure, but a girl can dream, can't she? :)
So, here goes, my slightly less addled account of Day 90!
Why are the numbers so important you ask, throng of new readers who were referred by a friend because my blog is so amazing? (Okay, I may still be a little tired) Transplant Day is Day 0. Every day after that counts upward towards Day 100, which, if we can make it that far without complications, will mean that the transplant was a success, and she will technically be out of the woods. That day for us is 9 days from now, on July 7. That is the day that she can have fast food again (although I will tell you why I am a bad mom in a second), when we can start venturing out into the world again (with caution, of course), and when we can breathe a little easier each day that she makes it past without something going wrong. So Day 100 is a pretty big day in BMT land, and we are fast approaching upon it.
Anywho, I haven't blogged much (or at all) since we've been home because I have been extremely busy trying to settle Miss Boots back into a routine and to settle her back into civilization, since her behavior indicates that she has lost her freaking mind sometimes. Tantrums times ten, hitting, biting, sleep issues, potty training (which we finally have under control, thank GOD!!!) plus trying to keep up on all of the cleaning, dusting and laundry that needs to be done, I am working the equivalent of two full time jobs, at least. And it feels like four. For all those who think I sit around and eat bon bons and watch Dr. Phil all day, or that I should be doing something more to contribute financially, well, I'm trying to find a polite yet effective way to convey the general idea of "kiss my ass", but I guess there isn't one...
Yesterday was just such a day where I think I definitely earned my keep. Day before yesterday, on Day 89, Sarah had a BMT clinic appointment, nothing unusual, standard routine. The night before that, I was flushing her lines and I noticed some small pinholes in the bottom of her red lumen. I went ahead and flushed it anyway to see if it was leaking, and it wasn't. But just to be sure, I called the exchange anyway, and within minutes, the on-call oncologist called me back. I explained the situation, and she told me that it could probably wait until clinic the next day, so we kept our usual appointment. I promptly explained to the nurse, nurse practitioner and the doctor that her red lumen was damaged, and they decided that while there is still necessity for a central line, Sarah is in the unique position of having two lines, which she no longer needs since she is getting better. So, as the broviac was going to come out soon anyway, and they can get what they need from her port-a-cath, it didn't make sense to repair the broviac when it would just be coming out within a month or so. So they decided to take it out right away. The doctor gave me a choice to take it out then and there, or to wait until the following day (yesterday), because we would have to be admitted since it would be a surgical procedure and it might take a couple of days to squeeze us onto the surgery board since it was non-emergent. So, I opted to go home so that I could pack our things.
"Packing light" for "just a few days" for Miss Boots and I consisted of: A small, fifteen inch duffle bag with clothes for her and I; a small, twelve inch toiletry bag with necessities for her and I; Her large, fifteen inch diaper bag, with necessities for her; a small, ten inch case containing her portable DVD player, DVD's and connection cables; Small, twelve inch Disney Princess duffle bag containing Sarah's toys (about three Lalaloopsies, Castles the Unicorn, who has been present at every single procedure and hospital stay and was not about to be left out now, and her Lalaloopsy magnetic paper dolls, Nintendo DS, crayon roll, etc.); and my purse. Thank God for Graco strollers, which can withstand four years of abuse, being laden like a pack mule with tons of "necessary" crap and still being sturdy enough that we have no need of a new one!
I get a confirmation call from the hospital telling me to be there at 10 am, and alerting me to the fact that they offer free valet parking for the parents (three years later when I have been hauling all of Sarah's stuff in the Graco all the way around the block from the parking structure to the front of the hospital), and I am ready.
Sarah manages to get to bed on time, but stays up for another hour because she is scared, and wants to know step by step what is going to happen to her. So I give her the play-by-play, assure her that she is perfectly safe and that tomorrow is a happy day, because soon she will be able to take a real bath with no Press-n-Seal and swim and there will be no more line flushing, no more home dressing changes, which means less for me to keep up with and less stress for me, because Sarah howls all of the way through a dressing change, which is very distracting! I finally get her to sleep, finish up the packing, and by the time I have a minute to breathe, now I can't sleep because she has me worrying. What if she's nervous for a reason, my happy-go-lucky little girl who worries about nothing? Sarah is fearless. She's been watching Coraline since she was two. She has been fighting cancer since before she was two. She looks me straight in the eye and deliberately defies me on a daily basis. This child fears nothing but the dark and the vaccuum cleaner (Yeah, I can't figure it out, either...), so what if there is something to be worried about? What if she knows something that I don't?
I know the procedure is routine and simple, even more so because the broviac is still new, having just been placed in December, and she still had a stitch in it from when they put it in, so it was a simple matter to just reopen the stitch and pull the line right out. I know that the surgeons are world-class, and that they do this every day. I know she could not be in better hands. I know that this is a good thing, because it is one step closer to normalcy, to a better life for my daughter and myself, but still I manage to worry myself halfway through the night until the wee hours of the morning. I manage to haul myself out of bed at 7:30, when I didn't go to sleep until nearly 3, shower, dress, (changed my outfit three times, then went back to the first one I put on, jeans, cons and my lucky Tori Amos t-shirt that I have worn to every procedure Sarah has ever had) get Sarah up, dressed and the car loaded. By 9:15 we were on our way. Cutting it a little close, but registration is never on time at the hospital, anyway.
Sarah was NPO, which is an acronym for some latin phrase meaning "Don't feed this kid because we're going to drug her and we don't want food getting in the way". So I didn't feed her breakfast, and I didn't eat myself, because as a mother, I just can't. Even when food is available and allowed, I feed my daughter first. I serve her plate, then I serve myself. I don't eat unless and until she does, which means that on procedure days when she is NPO, I don't eat until after procedure because she can't eat until then. Save that little nugget of wisdom for later.
We get to the hospital in record time, because there's no traffic! Yes! Getting off to an auspicious start! I'm feeling better about this. Sarah seems to be in good spirits, which I have managed to get her into while I am driving, despite a minor setback with her complete emotional breakdown because Daddy couldn't get the day off to come with. That man works way too hard and doesn't get paid enough. So, I manage to work my way past the "pissed off" because I do not need her in this frame of mind when she is about to go in for surgery, and manage to console my daughter with soothing words, and distractions, and promises of all that is to come (Disneyland with no broviac! Real baths where she'll get to play until her fingers prune because I won't have to worry about her Press-n-Seal coming off and getting her dressing wet! A surprise waiting for her when she comes out of surgery, because I always go to the gift shop and buy her a new friend whenever she goes in for a procedure!). This gets her smiling, and just for good measure, I throw on her Rapunzel CD, because while my iPod keeps me awake and helps to get my head in the game, I think she needs her music more than I do at this point. Works like a charm, especially when I sing along. She is distracted and happy, talking and laughing, and even declares that it is time to make chicken noises when I hit the apex of the turn on the freeway off ramp. This is always the designated spot to make chicken noises, I am not exactly certain as to why, but who am I to argue with a toddler's logic? If Miss Bossy Boots declares that it's time to make chicken noises, then it just is.
I drive around to the front of the hospital, the promise of convenient free valet parking dangling before me. I think I literally heard a record screech to a halt in my head when I see the front driveway full of cars, and the valets standing around talking. I wait, figuring maybe one or more of them will make a move soon to get these cars to the parking structure, but no, they continue on with their conversation and I am now blocking traffic with 10:00 breathing down my neck, so with a mental curse, I drive around the block to the parking structure and park the damn car myself,. I sit Sarah in her stroller, torture the Graco further by weighing it down with way too much crap, and walk the block and half around the building to the front of the hospital, where the driveway is still full of cars and the valets are still chatting amiably. Whatever, I've done it a million other times, what's one more?
I get into the lobby and there is only one person ahead of me. Okay, good. we're only slightly tardy thanks to the chatty valets, and we can still get this done. I let them know we're here, they make me a pass, (because semi-permanent hospital passes are another new improvement the hospital has made three years too late) and ask me to wait. Sigh.
Luckily, I barely have time to log in to Facebook when our name is called. We register, which goes by quickly because the guy already knows us, so I get my own jovial chat while he clicks off the questions in the computer with record speed. We are walked up to our room, told immediately that we will be getting a roommate. Double sigh. Rarely do we get a roommate we actually like, and this room is the size of a shoebox for one patient, let alone two. The nurse is one we've had before, and she is extremely compassionate and just plain damn good at her job, so she informs me right away that she has no idea what time they are going to get her in, but she understands that she hasn't eaten so she will find out right away. I take her to the playroom while we're waiting to hear, where she meets a little friend, Gracianne. Gracianne does not have cancer, (sometimes they put patients with other blood disorders or autoimmune diseases on the cancer floor), so she has the most gorgeous blond curls you have ever seen in your life, and she gave Miss Boots a run for her money in the sass department. Needless to say, they were instant friends.
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| Bella (in back) and Gracianne. Aren't they the cutest? |
We went back to the room when the playroom closed, and met our new roommate, Bella. Bella is 8, and her brother Liam is younger, although I'm not sure how old exactly. Sarah commandeered Liam into playing with her, which he happily did because he thought she was a boy. The Lalaloopsies didn't tip him off, apparently, but nor did they deter him when his mother informed him that she was, indeed, a girl. They played Candyland, then played "mailman" with the cards from Candyland when they got bored, which consisted of them "delivering" the cards back and forth, and then when they got bored with that, Bella and Sarah starting "delivering" the "mail" on top of Liam's head, which he laughed off good-naturedly. More new friends!
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| Sarah "delivering" "mail" on Liam's head! |
The nurse informs me that surgery can't take her in until five, and we are both starving, but she is so distracted with her new friends that she doesn't seem to notice or care that she hasn't eaten all day. Sarah looks sort of mournful when they bring in Bella's lunch, but I explain that we will eat as soon as she is out of procedure, and she doesn't complain. My poor baby should not be used to this, but she is. The nurse warns me that transport has a habit of arriving early, so I promise to have Sarah ready by four, costing her another visit to the playroom with Bella and Liam, but surprisingly, she doesn't throw a fit. I have her ready and in her hospital gown by 3:30, and damned if transport doesn't show up at 4:00 on the nose! We head down there, the nurse piles a ridiculous (but necessary) amount of blankets on top of both of us to combat the arctic temperature in the room, and we make light chit chat as we wait for the doctor to arrive. The anesthesiologist comes in, introduces himself, and with ninja-like precision, gives Sarah the Versed without either of us noticing. I realize in that moment that God has granted us a small miracle already. That is the first time ever, EVER! that Sarah was sedated and didn't scream her head off through the entire thing. She was alert and awake enough to tell me that they had already given her the medication, but I didn't believe her because she seemed relaxed, but not out of it. She was still herself, she was still my baby, there was still light in her eyes. That is the hardest part for me on procedure days, watching the light go out in her eyes.
She goes in by herself, no favorite nurse, no favorite child life specialist by her side, my brave girl, I kiss her goodbye, and she smiles at me. I settle into one of the sublimely comfortable purple leather recliners, prop my feet up on the ottoman, put on my iPod (I almost said Walkman, this is how tired I am! I think it's 1989!) with noise cancelling ear buds, and like it knows that I need this, the iPod pulls all of my favorites up on the random shuffle, everything I need to hear in that moment. I try to read on the Nook, but my brain is far too tired to concentrate, so I play Bejeweled 2 and try not to fall asleep in the ridiculously comfortable supple purple leather chair. Where do I get one of these, seriously? It must cost thousands, this chair, but I don't care, I so want one for my next birthday!
I am halfway between awake and asleep, losing at Bejeweled 2 because I am too exhausted to even match up three like stones correctly, apparently, and the surgeon comes back within ten minutes telling me the procedure is done, and it went beautifully. My phone is buzzing with text messages and email notifications, and I manage to answer one phone call from my husband before my phone dies on me. Thank God for my Nook and free hospital wi-fi, because I was able to update my facebook status to let everyone know so no one would worry. The doctor said they would come get me to go back to recovery within fifteen minutes. Fifteen minutes turn into thirty, and while I am immensely enjoying the comfort of this chair and my music and my e-reader, I start to worry that maybe I misunderstood, maybe I am so tired that I did not understand what the doctor said, maybe I was supposed to follow him out, and I didn't. What if they take her up to the room without me, and she's calling for me and I'm not there? What if they're looking for me, and I'm sitting in this chair and they can't get a hold of me because my cell phone is dead?
I am now sufficiently worried enough to reluctantly hoist my exhausted ass out of the wonderful purple chair and go inquire. The male nurse calls back to the recovery room for me, informs me that they have only just removed her breathing tube, and that he will walk me back there. In other words, I worried for nothing and I could have enjoyed another few moments of bliss in the purple chair. See what trouble my mind can cause?
They take me back, and she is still asleep. She sleeps for a good twenty minutes. She awakens, rubs her eyes, smiles at me like it's any other morning, then remembers where she is and peeks underneath her purple hospital gown to look for her broviac, which is no longer there. In it's place is a small square piece of Steri-strip, with a small amount of blood on it. She is free.
She gains her bearings a bit more, asks me if she can play a game on "Nookie" as she calls it, because everything has a name, and it usually has an "ie" at the end. My phone is Phonie, her dvd player is DVD Playerie, there is Stevie the TV, and Nookie. I hand it over, showing her a new free children's book I downloaded for her while I was basking in the purple chair. She was sufficiently entertained and happy. The nurse asked her directly if she had any "owies", which Sarah understands to be any pain, big or small, while the nurses mainly take it to mean big hurts. Sarah has been trained to give an honest yet respectful response when asked a direct question, so she told the nurse that yes, her chest hurt where they took the broviac out. She was not crying or screaming. She stated this matter-of-factly, then went back to playing with the Nook. The nurse gave her a shot of morphine. Sarah was more relaxed afterward, but continued to play a counting game on the Nook, and with precision was able to do it correctly.
We get back to the room, where we are given a warm welcome by our new friends, and informed by the nurse that there are no orders for when to send us home, and that there is now a hold-up because she felt enough pain to be given morphine. I explained to the nurse that I didn't think it was enough to keep us here, and she said that I should reiterate that to the night nurse because it was change of shift, and the nurse would take my word for it, being the parent. I agreed, and looked at the clock, fully intending to order Sarah some food, realizing that we had arrived ten minutes too late to order anything from downstairs,and my daughter had now gone a full 24 hours without eating or drinking anything. She starts to cry, my heart breaks. I try to console her, our new friends offer a variety of food, which she refuses. I manage to placate her with some fruit loops and chocolate milk from the kitchen, and within minutes she has wolfed it down (poor baby!) and is happily playing stuffed animals with Bella. Now, Bella is highly imaginative, witty, and HILARIOUS, not to mention that right around then she has a major case of the sillies, so the girls had a wonderful time playing, and I must say, it was just as enjoyable for us moms to watch. So much so, that even after we were discharged, Sarah wanted to stay and play!
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| Sarah managed to stop crying for a second and smile (sort of) for the camera! We love our new friend, Bella! :) |
Okay, here comes the part where I'm a bad mom...before I get to the part where I'm an even worse mom...
We had both gone over 24 hours at this point without solid food or liquids. We were starving, literally. So, even though Sarah technically can't have fast food for another nine days, I broke down and we had Jack in the Box. Let me tell you, the look on Sarah's face was priceless, and I must say, I never thought that I would miss fast food as much as I did. Those were the best curly fries, everrrrrrr......Ten days too early, but maybe the fact that they were forbidden fries made them better, I don't know...
Okay, so I get home, fed, satiated, exhausted, but happy...it has been a long, but overall a good day. My body clock is still off, so even though I am running on fumes, I drift off somewhere around 2 into a dreamless slumber...I swear it felt like I had closed my eyes for mere seconds, before I hear a loud thud, and my baby screaming for me, but not in the spoiled brat way that she knows is annoying and therefore will get me to come in the room faster. This was for real, yo. She was seriously in pain. I get into the room, and she's lying flat on her belly, can't get up. I figure she's still half asleep, so I pick her up, check her over, she seems fine outwardly, and I am able to calm her down and soothe her back to sleep, so I think she's fine. Three hours later, when she wakes up (and I have been writing this blog for three hours), I go to lift her up and she howls in pain. Not good. She kicks up a fuss, cries inconsolably with my mom while I'm on the phone with the doctor because she doesn't want to go back to the hospital. I throw on clothes, shoes, put fresh pj's on Sarah, load the bags I haven't had a chance to unpack from last night, just in case we have to stay, and we are off. She is chatting jovially with me the whole way, I am a nervous wreck, trying not to cry and frighten her. Something is broken, I know it. I can feel it.
We get there, and they usher us in in record time, the ER is surprisingly empty. We see a doctor within an hour, get x-rayed within two hours, get results within another hour, discharged an hour after that. She has a hairline fracture on her right collarbone, has to wear a sling for two to three weeks, or until the ortho consult tells us she can stop wearing it.
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| Sarah, looking none too happy with her new sling... |
She doesn't really like it, and I had to pin it shut so she would keep her arm inside, so I am looking into ways to make this more palatable for her. I made a pink sling for her dollie, the one I made to look like a bald Lalaloopsy doll that she named Sarah and drags with her everywhere. I clipped one of her bows to her sling. I am trying to figure out ways to decorate this sling, maybe make her a prettier one if I can figure it out. She is already getting so self-conscious about everything she has to go through; at four and a half, her body image sucks, and she doesn't like herself. She actually told me this morning that she was sorry, that she "always does this", referring to the fact that she had a hairline fracture in her hip at 20 months, which was how we diagnosed her leukemia in the first place. She thinks this is her fault, and no matter how many times I tell her it isn't, I'm never quite convinced that she believes me.
So here I am, two days with minimal sleep, minimal food, and all I want is a shower and big fat glass of wine. I have had a tension headache all day, and my neck and shoulders are throbbing they are so tense. Where does that leave us? Glad that it's over and hoping for a better and far less eventful day tomorrow.With this child, it probably won't happen because every day is an adventure, but a girl can dream, can't she? :)
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