Tuesday, July 17, 2012

Get over it!

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.

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.
My 20 month old baby at the beginning of treatment...she was so little!!!!

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.

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.

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.

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.

RIP Betsy...we love you!