Well, I'm going to give the bad news first so that I can end on a positive note.  It turns out that Becca does have VOD after all.  Supposedly, it is reversible, and three days of high dose steroids (methylprednisolone) should placate her liver by functioning as an anti-inflammatory agent.  An ultrasound with doppler of her liver on Monday morning showed the portal flow reversal the docs mentioned.  While we are quite concerned about her liver, we are also worried about her state of mind while she is on steroids.  Those of you who have followed the blog for quite a while know Becca's relationship with steroids and her tendency to get "roid rage."  Needless to say, Ethan immediately asked for a consult from psychiatry when he learned of the plans to put her on high dose steroids.

The team of docs decided to kind of blow Ethan off and chose to put Becca on Zyprexa (the drug they gave her the day of the bone marrow transplant) without consulting with psych.  As many of you know, Ethan does not like to be ignored, so he used some of his contacts to get a pretty rapid response from the psych department.  Their opinion was that IV Haldol would be a good option.  It is an antipsychotic drug, and it should be helpful in combating the side effects of the steroids for Becca.  Zyprexa would have had to be given orally, and we are struggling to get any oral meds in Becca right now.  We are lucky to get one dose of anything in her each day. In addition, if the Zyprexa didn't work, the docs would not be able to switch her to Haldol later.  Ethan's timing and persistence are again (hopefully) saving the day.

I'm writing to you currently from the recliner in the bathroom, since I have been banished to this spot by Becca.  She is mad at me for some reason or another and vehemently told me to go away and close the door.  Unfortunately for me, whenever something or someone hurts her, she immediately blames it on me (not sure why)... but I'm trying to have a thicker skin.  She would not let us get her weight this afternoon, because that was something she had control over.  I tricked her into getting on the scale around 10:30pm, though, telling her that if she didn't get weighed, they would need to give her the "pee medicine" (Lasix).  Maybe that's why I'm in the bathroom...

Becca's had a lot of pain the past few days, mostly in her hips and back, so they have upped her pain meds. She is also very uncomfortable with the added weight, as well as itchy.  Another mean trick that the steroids are pulling is that she is all of the sudden hungry.  When she hasn't eaten in about two weeks because of the mucositis, and she turned down all of the foods here or anything else I offered to get her, she finally yelled at me to stop asking.  After we got her weight, she had trouble going back to sleep tonight, because she told me she couldn't get comfortable.  We tried and tried to readjust her pillows, etc., but she broke down crying, saying "I don't know what to do... I can't get comfortable!"  I had a feeling it was the steroids making her feel this way, so the nurse gave her a bolus of Dilaudid, and she drifted off to sleep watching Ariel sing.

The good news is that Becca's cells are engrafting!  We have seen her white blood cell count increasing little by little this week, and she now has an ANC that is trending slowly upward.  Once that gets to 500, they will send off an engraftment test to see what percentage of her cells are engrafting.  She's still in the double digits, though, so it might take a little time.  We are also seeing signs of improvement in the appearance of Becca's face and mouth, which is where the cells go first to heal.  She had two tiny mouth sores under her tongue, and they are now gone.  Her deep purple (black) eyes are now a lighter purple, the bruising is moving down her cheeks, and there is actually a tiny skin-colored area surrounding her eyelids again.  I'm also seeing a bit of white in her eyes again.  I don't want to speak too soon, but I think Becca's coughing fits are decreasing, too.  We'll see what tomorrow brings...


Hillary said...


My heart and thoughts are with you right now. I wish I could make this all go away. Know that my family and I think of your family daily and are hoping for more and more signs that the transplant is helping to heal Becca's body.

Hugs, Hillary

John J. Viall said...

I will be pulling for your family and I'l say a prayer. I hope the transplanted cells take. A good friend of mine had this done and he's been healthy since.

What an ordeal for you all. I hope you all get some rest in the next couple days.

John V.

Supurrkitten said...

Thinking of you and sharing your story with my family and coworkers. It is so important that folks relize what you are going through, so they can send you some prayers to. I am sending healthy vibes your way. Wolfgang and I pray for her at bedtime each night and I am sending healing thoughts to your family to be together and healthy soon. I am so glad you are able to be there to advocate for her and make sure she is getting the best possible care. I can imagine it is a stress to be away from your jobs and the rest of your family. You guys are doing awesome. My heart goes out to you I know what it is like to be in the dog house with my kiddo but cannot imagine being "in the bathroom" ;-)

Unknown said...

Trisha and ethan, hang in there. All in the northern tier of the family continue to be in your corner. I remain in Illinois with my parents who both send their good wishes and hopes for lots of good cells. Love, Laurel