Tuesday, September 4, 2012


Today was uneventful and eventful at the same time. Today, Sarah had her DLI (Donor Lymphocyte Infusion...Google is amazing!) and it may have been the least remarkable thing that happened today. A tiny little syringe with what looked like blood, a quick push into her broviac, there, done. Seriously, took like twenty seconds, and yet, our entire future depends upon it. Those twenty seconds could mean a lifetime with my daughter.

Last night, Sarah spent the night throwing up, so she didn't go to bed until 3 am. She spent the last hour crying because I wouldn't lay down with her, not wanting to completely derail all of the training that I had spent countless hours instilling over the past two months. She said I needed to take care of her, that I needed to protect her. At one point, she said that she didn't want to fight anymore, that she wanted to go home. I explained to her that if we go home now, she will have to go to Heaven. I explained that this is the battle ground where we fight the cancer monster. This is our arena. If we go home, we forfeit. Game over. She thought for a moment, then said she was sorry, that she thought we should stay after all. It absolutely wrenches my soul that I have to be discussing this with my four year old. But what else can I do to make her understand? I don't want to bombard her with too much information, or make her try to understand things she is incapable of understanding. But at the same time, I have never lied to my daughter, and I don't intend to start. The sad reality is that if we go home, we lose. I thank GOD that she chose to stay. I don't know what I would have done if she had said she didn't care.

Once she was finally asleep, after two chapters of A Little Princess, seven lullabies, and a whole lot of cajoling and threatening, I managed to fall asleep around 4 am. Imagine my surprise when I woke up to find  my grandmother standing over Sarah's bed at 10 am! For a moment, I thought I was dreaming. I mean, my grandmother (at least, this one) is alive and well, but I couldn't imagine why she would be there so early and on her own. I blinked once or twice to ensure my eyes did not deceive me, and then I asked her how she got there. A friend had given her a ride, she said, and she meant to stay until my mom came after work, so that I wouldn't have to be alone today. I was grateful. While the infusion itself was anticlimactic, it's still a huge deal, and I was comforted by her presence today. Also making an appearance was Daddy, who proved himself to be helpful and made Sarah very happy with his presents and his presence! :)

Then, my grandmother's dear friend, the owner of King Taco, Lupe, came and brought about twenty burritos (fat ones) for our "guests", although no one else but my mother came, so we treated our wonderful nursing staff to some bomb ass burritos! :) Kara said that it was the ultimate pick-me-up.

Sarah was irritable today, to say the least. Due to the rash that seems to appear no matter what they give her, they keep giving her hydrocortisone to counteract it, but hydrocortisone is a steroid. I think I may have mentioned once or twice about my already headstrong daughter, and the effect steroids have on her. Crazy mood swings! It's like watching a little pregnant person. One minute she's laughing, crying the next. Kara says, "Hello, Princess!" Sarah smiles. Kara says, "Would you like some breakfast?" Sarah screams, "NO!!!!" Basically, her reaction to everything today was largely inappropriate. I tried to be sympathetic, while still maintaining some boundaries. Much like in pregnancy, there is much that is ruled by the hormones going crazy, and then there is a certain point where you're just being a bitch because you know people are making allowances for you. As a mother, it is my job to let her know in no uncertain terms when she is crossing that line. Which I did after she threw a huge fit before all and sundry because I asked her to walk ten feet to the nurses' station and back. Yeah. That was fun.

Kerry is her nurse tonight, and after the stern yet gentle talk I had with my daughter, Sarah apologized to Kara before she went home and has managed to be nice to Kerry so far, although the night is young! lol

At this point, it's a waiting game. We have reached the pinnacle with the DLI, and now we are simply waiting for her counts to bottom out and then come back up, which the GCSF should help to speed along, and then we can go home. Then we go home, and try to maintain some semblance of a normal life, while we pray like crazy that this worked.

As uneventful as the day was, our entire lives, especially Sarah's, depend on today. 10 ccs of bone marrow could give her everything, or leave us with nothing. Today is a HUGE gamble, but it's a risk we are willing to take.

1 comment:

  1. I recognize your evening, this event so well. Madeleine had three transplants, though autologous, the same anti-climactic and oh so important. My heart is with you there in that hospital room. Keep the faith!