Sunday, September 23, 2012

Decisions, decisions...

So I know that I have been MIA these last few days, and for all four of you who actually read this, I apologize. These last few days have been the stuff of nightmares, the kind of day you imagine when a doctor informs you that your child indeed does have cancer. We have been faced with some very difficult decisions, decisions no parent wants to or should ever have to make.

I can't even tell you what day that was now that the doctor gave us the disturbing news that there were 50% blasts in Sarah's bone marrow from her biopsy, which means that her blood is half full of leukemic cells, and this treatment was not successful. It also means that we are running out of options, and the time has come, the walrus said, to speak of cabbages and kings. It's time to decide whether we want to continue with treatment, or simply pack up and go home, running out the clock until Sarah dies. It could be weeks, or months, but slow and eventually painful. Or we can continue, but we're all sort of grasping at straws here, because there is no roadmap for where we have found ourselves.

That is the scariest part of all of this. For the past three years, there has always been a protocol, a road map, a plan for what we could do to treat her. There is no road map anymore. We are on our own, with the doctors and nurses, of course, but there is no longer a set course of action. We are down to trial and error, experimental treatments. And there is no other option.

After two hours with the counselor, and the social worker who joined us later in the Hope Room (which is really a broom closet with a table and chairs, a small desk with a computer that works sometimes, some pamphlets on a wall-mounted rack with information about various cancers, and a trash can that someone made use of as an emergency potty. Yeah, the poor counselor sat next to it as I cried for hours on end, God bless her, until she really couldn't stand it anymore! Now, if that's not love and quality care, I don't know what is!), discussion with my mother and more discussion with Mike, we decided that we all feel she has one more round left in her. I even asked Sarah herself, and she said she wants to keep going.

I am hoping that they have a better parent lounge set up in the new tower, cuz the Hope Closet is just sad. Hopefully something quiet and peaceful, with low lighting and soft colors and some of those awesome purple lounge chairs they have in the SSU. At least, that's how I would design it. But I digress.

During those two hours, I deliberated, not because I can even wrap my head around losing my daughter, but because I am afraid of pushing my own agenda onto her. I don't want to make her suffer unnecessarily just because I'm not ready to let her go, but at the same time, I don't want to give up on her before it's time, either. This decision is too big, and I feel like I am not wise enough to make it. This feels too much like playing God to me. Who am I to decide if she lives or dies? I was unworthy of such a glorious gift as this little girl in the first place, who am I to decide if I get to keep it?

After the counselor couldn't stand the pee smell anymore (gotta love that she sat there for that long!), we all had a good laugh, cleansing, healing, and then I felt better. I know I could probably find a more poetic way to phrase that, but I did. I came back to the room to find my daughter, laughing, playing with her toys, inviting me to play with her, and I knew with such certainty that we had to keep fighting. She is still so full of life. She is still here. She hasn't given up yet, how can I? If I took her home now, I would feel like I killed her, and if she dies, I can't live with that. I need to feel like I did everything I possibly could, like I did right by my daughter at every turn. I CANNOT feel guilty, about anything, because I won't be able to survive it.

Since we have decided to proceed, the doctor said he wants to use this drug called Mylotarg, which fizzled out of use a few years ago when they saw that it was doing more harm than good, but new research has apparently found that it could do some good for relapse patients, as it targets cancer cells specifically and leaves the good cells alone, meaning less side effects. Since it's making a comeback, the doc thinks he might be able to get his hands on some, and if he can, they will give her the Mylotarg with more donor cells inpatient, and if she does well with that, they will be able to treat her with Mylotarg once or twice a month in the OPI, so we'll be able to be home, do things, make use of our Disney passes, etc.

This drug is experimental, and it's scary that we don't know more, but this is where the path has led us. We are flying blind. Right now, I am praying like mad that I get to keep my daughter, I am enjoying every moment, I hug and kiss her even more than I did before, if that's possible. I am loosening the reigns a little, spoiling her, because why the hell not? I am half tempted to give her the toys we have put away for Christmas, because what if she doesn't make it that far? A closet full of toys she could have enjoyed would be more sadness than I could bear.

An example of my new found recklessness: Sarah received a $200 gift card to Target for participating in a study for this anti-fungal drug. I immediately went onto and bought $250 worth of toys. Just toys. Sure, I could have used it for boring but necessary things, like pull-ups, wipes, clothes, even. That $200 could have been a help. But I figure, she's the one that had to take the medicine. And it was a hassle. She was even allergic to it, and she had to go through that, too. She earned that $200, and she deserved to spend it on whatever she wanted to. My sweet girl wanted me to save it all for Christmas! She even got upset when I told her there was no point since she picked the stuff out, and that she could have it all now! lol

I feel rejuvenated with my new focus. I am determined to enjoy every day as if it were the last, while still maintaining some discipline, just in case this works and we all have to deal with her at 13, when most kids start to lose their minds. Yes, I know there are children less fortunate that don't have half of what she has. But this little girl has suffered through so much shit with a smile, I am going to do whatever I can to make her happy, whatever I can do to make her want to STAY HERE, I will do. Rule #1, don't judge the cancer mom!

And I must be doing something right. My daughter is polite and well-spoken. She is sweet and empathetic. She worries for other people. She would rather delay her own gratification in receiving a shitload of toys for no reason, so that I won't have to worry about money at Christmas time, which is also birthday time. She would rather forgo Heaven if it means she gets to stay here with me. That is a compliment of the highest order, as far as mothers go. She would rather be tortured, poked and prodded, she would rather suffer through this hell with me than be in Heaven without me. My cup runneth over.

So we fight. We enjoy every day, we take on whatever comes. But I will not let her go without a fight, and she won't let go without a fight. I can't get this child to stay in the Time Out corner, do you really think Cancer can take her before she's ready to go? If she's going to die, she's going to die with her sparkly pink boots on. And I will be right by her side, every step of the way.

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