Okay, so this is the post you need a box of tissues for, cuz shit's about to get real up in here.
Thursday, Doc calls me and says that Sarah's platelets have been trending downward (fancy doctor speak for "They're dropping") and they wanted to do a biopsy to find out what's going on. Fine. I have been wondering about the crazy huge bruises on her knees myself. Probably nothing, I say to myself. I make plans to go in the following day.
Friday, we go in for her bone marrow aspirate and biopsy. My mom decided to go with me, since she's on vacay and she wanted to hear what they had to say, plus she knows that LP/procedure days are THE WORST for me and for Sarah, so she wanted to be there for support. They do the biopsy, I cancel PT because there is no way Sarah is up for that after a procedure. I am told several times that they won't get the results back until the following week. That means probably while we're at Disneyland, but okay. I can deal.
Doctor calls at 2pm, but my phone is dead from the AMAZING outpouring of supportive messages from our awesome friends and family. So he leaves a voice mail, stating that they got the results of the biopsy back ALREADY and would like to discuss, he'll call me back later. Which of course, makes me crazy. So, I attempt to call the clinic and OPI to see if he's there, but he's MIA and I just have to wait until he calls me back. Easier said than done, but what are you gonna do? I distract myself with my little impish monkey of a daughter, and I wait it out.
Around 9 pm, when I am trying to coax the little diva into a bath, the doctor calls back and tells me that the results of the biopsy look like her leukemia is back, but that the pathologist didn't want to sign off 100% until the other tests came back. But he and the other doctors have pow-wowed, and they have a plan. Okay, I can deal with that. Pray like hell it's nothing. Could still be nothing. We'll see.
Yesterday, (Monday) the doc calls me after Sarah's labs (while I'm waiting for the car wash, no less!) to tell me that the other test results are back, and the leukemia is indeed back for the third time. Apparently, having it's ass kicked by my feisty little ragga-muffin wasn't enough for it. It wants Round 3. He wants to hospitalize us on Wednesday and start chemo. I tell him about Sarah's trip, beg and plead to postpone until next week, and he amiably agrees. We also agree that before Sarah's MRI we will meet to discuss the road map.Only everyone has gone for the day, so I have to call the clinic super early to schedule an appointment, while they're re-accessing Sarah, cuz Mommy is a big dummy and had them de-access after labs.
I call the clinic in the morning, they have me come in at 10, and I have to check in for her MRI at 11:30. They get us in asap. The doctor comes in not long after. Everyone is giving me and my mother these hang-dog sympathetic looks. They're sorry for us. They love Sarah, and while they see this daily, you can tell it hurts each and every time. The doctor attempts to give us hope without giving us false hope. They are going to give her drugs similar to what they gave prior to her transplant, except for the drug that prevents the graft vs. host, because the GVHD drugs also prevent the chemo from working in this case. And we really, REALLY want the chemo to work because she's got a 5% shot at a cure this time. He says he sees no reason why she couldn't be in that 5%, considering that my daughter is a freakin' ROCK STAR and pretty much sailed through chemo with nary a scratch. Still, we have to be prepared. If this doesn't work, that's pretty much it. When the terms "quality of life" and "hospice care" are bandied about, you know this is some serious shit. The rose-colored scope with which you view the world becomes the size of a pinhole. As her chances shrink, so does my hope that this will turn out all right.
I have to mentally prepare myself to lose my daughter. I don't know how to do that. Does anyone? I have to somehow make myself at least face the possibility now. For three years now, I have banished the thought. Whenever the thought of her being gone would creep in, nightmares of her funeral, who would be there, who I would kick out, who I would bitch-slap and THEN kick out for saying the wrong fucking thing to me, I would banish the thought as quickly as it would come. Stay positive, think about what you do want, not about what you don't want. She's still here, I would remind myself, and I would take a moment to study her face, to touch her, hug her, kiss her little round cheeks. And as long as she is still here, I can deal with anything. Do I have a choice? Everyone is encouraging me to take a little time to cry, to mourn, to curse and to hit things. And believe me, I would love nothing better than to drink myself insane and then sleep for a year.
But no one has time for me to fall apart right now, least of all Sarah. She needs me. She takes her cues from me for how to be in the world, for how to be a woman, for how to be a human being. If this is all I get, I'm not going to waste my time in self-pity. I'm going to take her to Disneyland, and spoil her rotten. I'm going to find the biggest lollipop they make and let her eat it for breakfast. I'm going to enjoy my daughter while she's still here, for however long that is. A week, a month, a year, twenty years after I am dead and gone, whatever it is, I intend to revel in it. I am going to savor every sweet morsel of time I have, because I may not get more. Time is all relative, anyway. Sarah has taught me more in her four short years than I ever thought capable of learning in a lifetime. Make no mistake, I am not prepared to lose her, not yet. We are still praying for a miracle, and we will not give up before it's time. But if this is all I get, I intend to live it out with no regrets.