Very High Tumor Markers

I had been putting off doing an update because I had been hoping for some good news on Elizabeth's status to post. Unfortunately, I don't have any great news to share about how the new treatment is going so far.

When she was in the hospital for her infection (6/20-7/21), her AFP levels were checked (circa 7/16). It was the highest it had ever been at 6600. The day she started the cyclophosphamide/vinorelbine regimen (7/28) her AFP measured 15,900. And this past Friday, 8/11, after being on two weeks of therapy, her AFP is up to 27,500. We have never dealt with tumor marker numbers being so high.

As of her last CT scan (7/10), there were no new apparent gross tumors growing. We are currently lobbying to get a CT scan sometime next week. We have three main concerns. First, her AFP numbers are very much out of control, and something is certainly growing somewhere (or everywhere...). Second, she is off the antibiotics she went home on after the hospital stay, and we want to make sure the infection truly has been taken care of. And last, the reason why we are pushing to get it next week is because Elizabeth's Make A Wish trip has finally been scheduled and we leave on 8/26. We certainly don't want to be away from CHLA and have any major medical issues come up!

So on a more positive note, Elizabeth's Disney Cruise is finally going to happen. The boys are almost as excited as she is! I'm glad that we're doing this, but so apprehensive on so many levels. We'll be cruising for 4 nights, and I worry about making sure she's fine and won't need to be hospitalized for the time we're gone. Also, she only get's one Make A Wish. So, in a way, it's very final. There will no longer be a Wish trip to look forward to. I had been putting off doing it because in a way I'm scared to go. It's almost like admitting we're near the end and sort of fulfilling a dying wish. And I'm not ready to go there yet (like I'd ever be!).

So please keep her in your thoughts. Say a prayer that she has enough strength to keep fighting this thing. She's dropped weight over the weekend again, and she needed red blood cells transfused two Fridays ago. It's so hard to know whether or not she's going to bounce back this time or not. She's surprised us so many times before. I just pray that she has some more surprises in her.

Thank you so much to all the ChemoAngels who have put countless smiles on Elizabeth's face again! She has been showered in cards, letters, packages, and love. I am continually amazed at how much good a simple card in the mail from an angel will do for Elizabeth. As we get further into this, each and every smile of hers becomes more and more precious to us. I am so very thankful to each and every one of you who has blessed us in this way.

Thanks for checking in on her. I'm sorry there isn't better news to share. I wish the day would come that I could post that she was in remission, but sadly we aren't (and may never be) there.