I know...I know...several of you have commented that you have poring over the blog ravenously looking for any information, and I have let down my adoring fans by falling off the map! (Ha ha) But seriously, it hasn't been the smoothest ride. You'll forgive me when I tell you why I haven't posted in awhile, or why I haven't even plugged in the laptop since the last time we were inpatient!
So, as the four of you who read this may already know, at the end of August, right before (and I do mean RIGHT BEFORE) Sarah's Grant's Wishes trip to Disneyland, we got some bad news, that Sarah had relapsed, and they wanted her to come in right away. I convinced them to wait until after the trip, and literally the following Monday, we were inpatient, and hopeful that some more chemo and some extra cells would do the trick. Long story short, it didn't. We went through five days of chemo, and the horrible side effects that go along with it, then DLI (Donor Lymphocyte Infusion), which is a fancy way of saying, "They gave her more donor cells", and then the blasts started showing up in her peripheral blood. Basically speaking, her cancer is back, and now it's pissed off. The doctor gave me the devastating news that there is not much else we can do, we are at the end of the line, pretty much out of options as far as protocol goes. Kara held me as I cried, really let go for the first time in three years. I used to be the world's biggest cry baby. But during the past three years in crisis mode, I think I can count the number of tears I've shed. I don't allow myself the good hearty cry anymore. I probably should, but I figure if Sarah doesn't feel sorry for herself, what right do I have?
So, we discussed our options, I cried my eyes out to the therapist and the social worker, we decided to keep fighting, and to try this drug they had to get special permission for called Mylotarg. So far, she has gotten two doses, this Friday will be her third, and everyone was amazed at how well she's been doing, until she spiked a fever, and now we're back in the hospital.
So there's the recap. At home, it has been CRAZY, in more ways than one. Not only did I have a world of crap to put away as usual, but my mom had the house deep cleaned before we got home, and everything was put back haphazardly, (as in, 100 year old soy sauce in the forefront of the fridge, milk in the back, behind a thousand other bottles...wtf?) so I had a lot to do in the house, getting things back in order. My only saving grace was that everything was already clean, just not where it needed to be. That, and I decided since I was reorganizing anyway, I might as well clear out Sarah's toys to make way for her birthday and Christmas, and really, to make room for the load of crap she brought home from the hospital because our house is full to bursting!
Add to that the fact that Sarah's sleep schedule (and consequently, mine) is completely upside down, and that unbeknownst to me, because I didn't get the info until two weeks later on the side effects of Mylotarg, Sarah is experiencing anxiety and depression as a result, and I thought she was making things up to avoid having to go to sleep, because my child is happy-go-lucky most of the time. My child is NEVER inconsolable, and she worries about nothing, even when she should. I force myself to put on a brave face for her sake, and I never tell her when I'm scared for her. I simply explain as best I can in language she can understand what is going to happen in the immediate future, and I help her cope with the aftermath. So, of course, I thought she was making things up when it was three in the morning and she would tell me she was scared, or worried, but couldn't exactly tell me why. Then I get the info about the side effects, and I feel like crap, because I've been yelling at her for two weeks!
Then, there is the emotional aspect of things. I have been having a really hard time, not just with the obvious, day to day things. This is the first time I have really had to deal (or really allowed myself to deal) with the really hard issues. I had to decide whether or not to continue treatment with my daughter, or let her go. How do you make that kind of a decision, especially with a child as bright and vivacious as Sarah? We filled out an AFND form. AFND stands for Allow For Natural DEATH. I had to, line by line, go down a list and think about what I want and don't want them to do to try to save her life from now on. And with each line, I have to imagine my baby jolted by the paddles of defibrillator, my baby unconscious with a giant tube down her throat and covering most of her tiny face, my baby lying there, taking her last breaths. I have to imagine a world without my baby in it. I now clean her room, while she destroys the den, and imagine what it would be like if she never came in behind me again to make a mess. What it would be like if the Lalaloopsies were forever still, if the framed pictures of Sarah on the wall were the only way I could ever see her face again?
I struggle with these thoughts on a daily basis, and I found myself for the first time in three years, since we first got her diagnosis, parenting out of fear. Every time Sarah whined or cried, every time she made a mountain out of a molehill, instead of comforting her as I should have, I laid into her like a drill sergeant. I basically told her to suck it up, and when even my mother looked at me with this, what the hell is wrong with you? look and told me, "She's sick, Adriana," I saw myself for the first time in that moment. And I realized then what I was doing. I don't want her to be sick. If she is going to make it through this, she has to be strong. She has to be tough, I can't let her give up. I need her to fight, even if it's just with me, I need her to fight, because I need her here. I broke down, as I am wont to do randomly now that the floodgates have opened, and I apologized to her. I told her, as I never have before, that I'm scared, too. That I don't know what's going to happen, but that whatever it is, we are going to get through it together. And for the first time in all those weeks, I saw relief on her little face. I was inadvertently making the problem worse with my own fear, in trying to put on a brave face, I was actually making her more afraid. I realized that she can see me better than I think she can. I forgot something that I have known since childhood. Sometimes, it's okay to break down. Sometimes, it's okay to be afraid, and to say so. It's even okay to cry, as long as that's not all you do.
My "brave face" was making her feel alone. I should have known that. I have been there myself, and I even think that "brave face" has mutilated my marriage. I had to re-learn what I already knew from experience, and had forgotten. She doesn't need me to save her all the time. She is bright enough to know that there are some things even Mommy can't fix. She needed me to join her. She needed to know that I was with her, 100%.
We are back in the hospital, but things have been better between us since that night. I know that her anxiety is not a contrivance, but a side effect, mixed in with some natural fear and sadness of her own. Yes, it is my job to condition her, to train her, to prepare her for the real world, especially if she is lucky enough to get to stay in it, but that is only part of my job description. The most important part of my job is to love her. Just to love her, whether or not she makes sense, whatever the rest of the world thinks about the fact that I have slept in her room every night since that night, even when I didn't need to, that I have given her chocolate bars before dinner, that I have bought her McDonald's four times a week because it's all I could get her to eat. Medicine is running it's course. It is love and grace that will get her through this now. Love, grace and miracles both big and small. That's all we can hope for now.