It has been a while since I posted last, and there is good reason. This little lady keeps me on my toes! As soon as I clean one room, she has destroyed another, and getting her back into her normal at-home routine was more difficult this time around. In other words, she threw a raging fit any time I asked her to do anything, and regressed big time, where she insisted on wearing pull-ups all the time and wouldn't tell me when she had to go. The mylotarg really wiped her out, to where she would just lay there some days and watch tv. Anyone who knows Sarah, has ever met Sarah in their lifetime, knows that this is not like her, at all. Sarah is very active and always going even when an adult would be laid out flat, and the television is background noise for her. It's constantly on (I know, but save your lectures. I'm aware of the evils of television as well as my carbon footprint.) but it's mainly to keep her company while I do my chores throughout the day. She will rarely sit through an entire program. Now that I have her almost fully trained again, where she can get through a day without a single tantrum, I have actually gotten her to turn it off while she's playing, but for her to sit there on the couch and watch program after program? She had to have been feeling awful. Her appointments were twice a week in OPI so that she could be seen by a doctor every time, and so that it was more convenient if she needed anything, which she did. EVERY.SINGLE.TIME.
She needed platelets nearly every visit, sometimes blood, too, and many overtime hours were worked because of us. Dr. Horvath gave her some supplements, all natural, to try to restore overall health, which helped to give her some energy and even opened up her appetite a little. Still, I have spent the last month or so struggling with my fear. I have never seen my daughter this way in her life. She has always been so vibrant, so full of life, and I can feel her waning. She's tired, physically and emotionally exhausted. I took her out of PT because I didn't want to waste time on something she hates doing. Her energy was at 75% to begin with. If she was going to expend energy, I wanted it to be on something she actually enjoyed. She's been so tired, so drained, that I no longer recognize my child sometimes. I know that I'm supposed to have faith, that I'm supposed to leave it up to God, and I have. But I'm a realist. I believe that God does what He wants, and there's not a thing any of us can do about it. If God wants her, He will take her, case closed. And I know I'm supposed to be okay with that. That I'm supposed to find a way to be okay with that, but how do I let go of my child? This isn't some so-called friend that wants to act dumb, or some parking ticket I can't afford. This is my daughter. How do I just say, "Oh, well, it's up to God now"? It feels too much like giving up, and I know that's wrong, which is why it's a struggle. If I was absolutely sure of what to feel one way or another, it would be easy.
And no one ever said that being faithful was easy. Never have I read anywhere that anyone who was ever tested by God wasn't scared. It only says that in the end, they believed that God would deliver them, that in they end, they followed what God told them to do. And I fully intend to do the same, but for some reason, it weirds people out that I'm afraid, to the point where they keep telling me I need to be faithful, that faith and fear don't go together. I don't necessarily agree. I think that fear is sort of a crossroads, and you can either choose to be faithful and believe that somehow things will all work out, whether you believe in a higher power or not, or you can choose to wallow and whine and be counterproductive and annoy the shit out of everyone around you. I don't think I need to tell you which path I choose, every single day, but I have walked a path of fear for a little while to get there. I mean, think about it. If I said I didn't fear for my daughter, especially at this point where we are running out of options, where she is dropping weight so dramatically that last year's clothes don't fit, you would either think me in denial, or cold and unfeeling. And I am not the type of person who suppresses anything. I need to ride the wave of fear in order to get over it. I spent an entire day crying in front of Sarah's dresser, because the sight of a dresser full of clothes that were falling off of her was just too sad for me to bear. And who do you talk to about something like that? So I rode it out alone, (although I did talk to another cancer mom about it the next day) and then I was able to deal with it, and move on.
I always settle in a place of faith, it's just not always a smooth, direct path. Especially when difficulties come up every day that make me wonder if she really will come through the other end of this alive. I know that one way or another, it's going to be okay, someday, but in the meantime, it's scary as hell staring into the face of the demon that aims to take your child from you, when she's all you have left.
Tomorrow is particularly difficult day, and tonight for me is filled with fear. The nurse practitioner explained that they are going to do a bone marrow aspirate and biopsy (they are taking some bone marrow out to test it) in order to see if the mylotarg she's been on has been working to control her leukemia, or if it hasn't had the desired effect. If tomorrow they find that she has less than 20% blasts in her bone marrow, they will consider this to mean that the mylotarg has been successful in controlling her leukemia, and I am unsure if they will continue with it or not. If, however, she has more than 20% blasts, that's considered a relapse, meaning the mylotarg was unsuccessful, and that we will have to try something else if we want to continue treatment, which, of course, we do. She is a little weaker now than she was, which scares me, but she is still very much present. I couldn't see discontinuing her treatment now.
If the mylotarg wasn't successful, her doctor wants to try a drug called Interferon, which they use widely in the US in adults, but there is no data for it's use in children, except for one study from one center in China. So basically, we would be spit-balling to see if this would work or not, with no data to guide our decision or predict an outcome, way off the beaten path with a map we made ourselves. SCARY AS SHIT.
Ironically, although tomorrow will be a very trying day, especially on no sleep, tonight will be even worse. I don't know what tomorrow's biopsy will show, and that is scarier than knowing whether it worked or it didn't. There is a lot riding on this, after all. And I know, I need to trust. I need to have faith. I need to believe the way that Sarah believes in me when I tell her that everything is going to turn out just fine. I mean, shit, while I'm a nervous wreck over here pouring out my heart to strangers to keep from going insane, my daughter is eating a taco and laughing at a short film on water birds that happens to be one of the special features on her Rescuers DVD, fully aware of the fact that she has a procedure tomorrow. She's not afraid, because to her, as far as she knows, it's just another procedure to add to the list of many, another bead on her Beads of Courage string, another annoying task that gets in the way of her busy playtime schedule. She knows that after that, she'll play for awhile, and the biggest thing she's worrying about right now is that we didn't bring anything pretty to wear to the "Christmas party" they are throwing in the playroom tomorrow evening. I need to take a lesson from my child. She is faced with all of this, and it's all normal to her, routine, and while she has been fretting over it a little more recently, it is still not nearly as much as full grown adult would. All of these kids are so amazing. For everything they can't do, there is so much more that they can. God knew what he was doing when he made this little girl as strong and as stubborn and as sassy as she is. God knew what he was doing when he made her so sweet and loveable that even strangers love her and follow her progress, that she has people who don't pray praying on her behalf. I can have faith in my daughter that God made her strong enough to withstand more than most adults could already, and she isn't done fighting yet. I can have faith in Sarah. I can believe in Sarah. And I do.