Wednesday, July 27, 2011

The hardest days...

These past few days have been craziness, in a very positive way. I discussed with my husband the possibility of hosting an online sale, since there was a tumbleweed running through my fanpage and we wanted to take as much spending money as possible to Disneyland in less than two weeks. For those of you not in the know (although I think all four of you who actually read this are IN the know), Sarah is getting her wish granted through the Make A Wish Foundation in 10 days! Her wish was to go to Disneyland. She went once before, on my 30th birthday (HA! I "accidentally" typed "20th"...Freudian slip much? lol), just two months before she was diagnosed with ALL. I look back at the pictures of her then, cute little pigtails, chubby little baby face streaked with cotton candy and whatever else my mom said she could have despite my protests, and I think I should have known. While we were waiting in line for the Haunted Mansion (yes, OUR baby rode the Haunted Mansion at 18 months and didn't even blink, she is THAT fearless!), I noticed a gray hair while she rode on her father's shoulders. When I mentioned it to Dr. Asshole Rockstar, he of course told me it was nothing. It happens. But I should have known then. Anyway, it is what it is, but for the following two years, sick or not, Miss Bossy Boots has been begging us to take her back to the Happiest Place on Earth, and it broke our hearts to have to explain to her why we couldn't take her. So we planned a trip. Two years from now, my mom was going to trade in her time share, and we were going to save, save, save for the "Fake-cation" of a lifetime in sunny Aneheim, CA. By then, I imagined that she would at least have a cute little Snow White-esque bob, and she would dress like a different princess every day. Then the social worker at the hospital asked if Sarah had been granted a wish, and long story short, we got our "Fake-cation" a lot sooner, and totally paid for. So, I knew then her hair wouldn't be as long when we got to go, but still I envisioned this, and I kept this vision in my head during the hardest of days...during the hospital stays, during the blood transfusions and the countless hours in the ER, and especially the LP's that KILL me every single time she has to endure them.

Sarah just had an LP today, so allow me to digress a bit, dear reader, to impart to you the images that are still fresh in my mind. LP's are Lumbar Punctures, better known to the layperson as a "spinal tap". Basically, they inject chemo drugs into her spinal column to prevent the cancer from spreading to her nervous system, including her brain. She has them every few months or so, and she has had at least 20 during the course of her treatment over the past two years. So you would think that these LP's would become as routine as everything else us "cancer moms" have to go through, right? I mean, after all, I can speak "cancer-ese" with the best of them. Over the past two years, I have learned an entirely new vocabulary set. LP, PT, 6MP (aka Mercaptopurine), Methotrexate, Dexamethasone, flush the line, port access, lymphoblasts.I can tell at a touch whether or not Sarah is spiking a fever. I routinely pack a lunch for OPI (another vocab term), because they only feed her, and her little body loves to surprise us with the necessity for transfusions that take four hours or more. I am used to all of this. I no longer have to ask doctors to explain when they speak "cancer-ese" to each other, and they no longer bother to dummy it down for me. I am, after two years, an old hand at this. I follow every instruction to the letter, I never miss appointments, I am never late without a damn good reason. I call ahead. You would think the LP's would be just as routine, that we would be just as used to it as all the rest.

I'm not even sure what it is. Because all the rest of it is routine. I don't stop to think about the gravity of it all, I just do what needs to be done. Blood? Sure. Platelets, fill 'er up. Hospital stay? Not ideal, but whatever. But the very mention of an upcoming LP will begin to twist my stomach into knots. I'm not sure what it is. Routinely, an LP goes like this: The child is sedated with two drugs, versed and ketamine. This puts the child into a "twilight" sleep, which means they're not totally under, but they are sedated enough to where they won't fight, and one of the drugs helps to block their memory so that they won't really remember the procedure. As soon as the child goes under, the parent leaves the room. A few minutes later, the parent is retrieved, and the child is monitored with those science fiction-y electrodes. Her finger or toe is hooked up to a Pulse-aux machine, which measures her heart rate (the little sticker that goes on her finger or toe has a red light on it, so we call this "ET toes", because they usually put it on her toe to keep her from taking it off). The child is monitored until they are showing signs of being back to normal, and then they are released. Not too bad right?

UH-UH....Excruciatingly HORRIBLE to endure as a parent. See, the scenario I just described is if the child COOPERATES, which my child, of course, does not. Sarah is smart. Sarah is a watcher. She likes to see what's going on. She likes to be in the middle of everything. She does not like to lack focus or control. So for her, being sedated is a form of torture, because these drugs affect her as if she were very, very drunk. Slurred speech, double vision, etc. So she fights. They push the drugs through her line, and as soon as she realizes she's going under, she freaks. It's like watching your child being pulled out of your arms, screaming and yelling for you, and there is nothing you can do. Then, the drugs start to take effect, and that sparkle, that light that I so love about Sarah's eyes, goes out, and there is nothing. A dead stare. Cold, gone. Nothing. And I hold her, and I look, and I force a smile because it's what she needs from me, reassurance that everything is okay, because behind those dead eyes is my baby, frightened and fighting to push through the drugs back to consciousness. So I smile. And I look my baby in those dead, cold eyes, and I coo to her that everything is going to be okay, because somewhere within me I know that when this is all over in just a matter a minutes, it will be. Then comes the really hard part, as if this wasn't bad enough. First, Sarah is now old enough and smart enough to know what the "little white room" is for, so even sedated, trying to get her in there is like trying to bathe a cat. She screams and clings to me, climbing up  my body as though something were chasing her. Not only do I have to take her in this room that frightens her so anyway, I have to turn around and LEAVE HER THERE. In good hands, of course, but I have to fight every motherly instinct that I have in order to do it. But I do, then I get to go sit in the waiting room, and fight the urge to cry for the longest five minutes of my life. Believe it or not, this is really the only time that I feel the need to break down, these LP days, and I CAN'T.

So now that I've terrified and made the reading of this sufficiently awkward, I think you can understand now if you didn't before just how special this trip is to us. For five whole days, our family will be together, all of us. For five days, all we will have to worry about is being overly gluttonous. My little princess is going to Disneyland bald-headed, but I have a bow and a headband for every single outfit. Daddy can play and doesn't have to look at the clock. Mommy can let the kids be kids and eat junk three meals a day. Mommy doesn't have to be the heavy and say no for FIVE WHOLE DAYS. Ama can buy Sarah whatever she wants, and Mommy won't say a word.When Sarah sees the castle at the beginning of any Disney movie, she screams as loud as she can, "DISNEYLAND!!!!"  In just 10 days, she will be there for real.

I had no idea when I posted the sale that so many people would participate, much less leave such generous donations. I feel so loved, and so blessed, both for myself and for our family, especially Sarah. I am so, so blessed to have such kind hearted, generous people in my life, whether I have formally made their acquaintance or not, and it is people like these and their encouragement and emotional support that get me through these difficult days.

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