Elizabeth is home

Today we were discharged from CHLA to go home. We will be back for lab draws on Monday because we requested it. As much as we know that Elizabeth will not see a cure (save for a God given miracle), we are just having such a difficult time turning our backs and giving up on doing everything we can (which includes transfusions or antibiotics when necessary) to keep her as healthy as possible. There can sometimes be an air of "why bother--it's not going to help the big problem" and we aren't expecting her tumors to go away or even be treatable, but we want to treat everything else that we can, if for nothing else than to keep her as comfortable as possible. Her little body doesn't need to fight anything more than it already is facing, and modern medicine can still help some things (like infections or low red blood cells) even if it can't help what she needs most (a cure for cancer). We met with Trinity Kids, the best kids' hospice group for our area, and have their information when we are ready to go that route.

The question I have been struggling with most since Tuesday (the dreaded CT scan day, January 2nd) is if we have to lose her, when will it be? Unfortunately, that is one question that no matter how educated a guess the docs (or anyone else) make, they just don't know the answer. It could be days, it could be a few weeks, and the reality is that we may not even have any warning. She could turn for the worse and it could be sudden, or we may know it is inevitable for a couple days.

We have been told that there's nothing else to do to treat her cancer before... but this is truly the worst and furthest along the cancer has been. Elizabeth has fought so hard and for so long. I want her here with me but I don't want her to suffer, either.

Please pray for us. We need strength and guidance like never before. Or better yet, pray that Elizabeth is still granted the miracle of a cure on earth.

Just a note, Elizabeth asked to stop at the Griffith Park Carousel on our way home from the hospital. We did. I held Elizabeth's frail body wrapped in blankets as we sat with Dad on the carousel bench (she didn't feel like riding a horse, and I'm not sure she physically could have even if she wanted) for three ride arounds until she wanted off to get a snow cone, which she licked three times before being done with. All summer she would ask to stop at the carousel after hospital stays or blood draws. It was her post-hospital ritual, whether with Dad or me. I will never forget how her head smelled against me or how her small body felt cuddled in my arms. God I want her to live so badly.

Thank you to everyone who has been signing Elizabeth's map and caringbridge guestbook and leaving comment entries here. Your kind words and support mean so much to us. Thank you to all our friends and family who are making sacrifices so they can help us and support us. Thank you for all your phone calls and voicemail messages and prayers and hospital visits. We feel so blessed to be surrounded by so many people who are ready and willing to drop everything at a moment's notice to help us. I am continually being amazed at how many people are stepping up to help in the last few weeks. It is such a paradox to feel so blessed to have so many who care and are touched by Elizabeth, to feel so lucky to have Elizabeth in our lives, and yet feel so utterly miserable at the recent scan results and her cancer's control.

Is it so wrong to still hope for the unrealistic, the improbable, the impossible? I keep asking myself if I'm just kidding myself and setting myself up for utter and complete disappointment. Really, if cancer claims Elizabeth's young life, there will be no worse feeling--whether I'm expecting it or not. Right or wrong, for now, I'm choosing hope.