Day +28: Still Hoping for More Counts

Much has happened since Sunday's blog. One of our favorite doctors on the team came back on rotation and told us he was taking Brianna's chart and reviewing all her labs and her drugs and trying to figure out what to do about her poor kidney function, low white count and obvious lung infection. We were so thankful to hear this.

Her white count dipped again today to 0.4, and it has been hovering around that for the past couple of days. So it was decided to take her off one of her graft-versus-host disease prevention medications and switch it to another. He thinks it was suppressing her white count. Her last dose was Monday and so far there's been no improvement in her count, but he said it would take several days for the drug to get out of her system before we'd see an increase. He did admit though that he was also disappointed by the decrease in today's number of white cells. So she's been put on another drug to prevent GVHD and that shouldn't have any affect on her cell production. We're hoping to see some increaseses at least by Friday.

On Monday, the infectious disease docs did come in and say that the fungus she has was identified as aspergillus, a fungus that is found throughout the world. So one of the two antifungals she's on was switched out, to be more targeted in fighting that type of fungus. Also, because she got this infection so early in the transplant process, they believe she had it before she came in. They didn't think about looking for it because most people have lots of fevers and are really pretty sick. Brianna hardly ever had fevers before here - even now. But the doctors think because she was neutropenic (have low cell counts) for many months before she got here, it made her more suseptible and that she probably should have been put on an antifungal right away.

A chest x-ray was taken on Monday and showed more fluid around her lung. It's probably due to the fact that she is retaining water outside of her vascular system, so her hands, legs and knees are puffy. This would make anyone very self-conscious, let alone a teenage girl. But the added fluid has added to her lung infection. They wanted to be sure so an x-ray was taken sitting up and laying down to see if the fluid followed gravity. It was so painful for her and she had a terrible coughing fit, more so than normal. The pictures showed that indeed it was extra fluid and not a spread of the fungus.

Also her kidneys were working at 30% of their normal, which made it even more difficult to regulate her intake of fluids and output. That was the big issue with the low potassium diet and the 2 ounces of water (then changed to Gatorade) an hour. She's also on lots of medications that are toxic to the kidneys, so it's understandable that there would be some problems. But thankfully today, her kidneys look like they're recovering and are up to 50% of their normal function. Her lab report on her general blood chemistry shows a great improvement since the weekend. So her kidneys are beginning to heal.

Last night, our doctor was given the opportunity to have dinner with the worlds foremost physician in aspergillus research and Brianna was a main topic. She's on all the right antifungal, but he said that the best thing to fight these infections is a person's neutrophils - which of course are basically nil because her white count is so low. So it was suggested that I be given a drug that increases my body's production of white cells. Then, they harvest the white cells, which have lots of neutrophils, from me, irradiate them to kill my T-cells, which would fight her, and infuse them into Brianna to help in the fight in her lung. So far, that's the plan and I'll be on a blood collection machine for three hours tomorrow if all goes well. Then, those cells will be given to Brianna and hopefully they'll kick that aspergillus right in the a!@*!

The other question our doctor asked of the expert was had he ever seen an infection like this be resolved without surgery and the expert said rarely. When we were told, Brianna piped up and said she was going to be the exception. We believe she will!!

Also troubling us was the question of has something gone wrong with the grafting of the donor's stem cells in Brianna's marrow. The doctor was already ahead of us on this issue too. He said it was highly unlikey, but he was troubled by the drop in her count. So he had ordered a chimera test of her blood to see how many of the white cells in Brianna's body are hers and how many are her donor's. The results won't be in for a week, but if there are too many of Brianna's, they may have to harvest more stem cells from the donor and infuse them into Brianna again. This may mean more chemotherapy to destroy what she has already. Of course, if her counts start to increase over the next few days, then it may be a mute point - obviously that is our prayer!

We came into this thinking it would be a slam dunk since Brianna was doing so well in the beginning despite all the nausea. Even the doctors have said she is giving them a run for their money, because they'd come in our room on morning rounds and she'd be all smiles and no major problems. Then this infection hit and everything's been turned upside down. I say it again...it's unbelievable what you get used to and we're hoping surgery is out of the realm for our daughter. But they want us to just talk to the surgeons next week if it becomes a reality in the weeks ahead.

Again, we ask for your prayers and thoughts of healing and better news to come. I can't help but also feel resentful that the boy in the room next door - who was admitted four days after us - was discharged yesterday. I didn't say anything to Brianna (and she probably won't read this blog) but it makes me question why that couldn't have been us!? I know I shouldn't do that, but I can't help it. Prayers, positive thoughts and well wishes are needed ten-fold. And some better news about our beautiful daughter's ultimate recovery.