Day+35: Good News Brings More Hope

It's been several days since I last posted, and we've gotten several pieces of good news since then. But it still is going to be a very long hospitalization and recovery for our sweetheart.

First, we learned on Monday that the white cells floating around in Brianna's peripheral blood were 100% her marrow donor's - a good thing. Next, we found that there was no sign of any monosomy 7 cells - the malformed ones Brianna's body was producing that caused her MDS condition. Then, yesterday we learned that the stem cells in Brianna's marrow are virtually all her donors, that the white cells in the marrow were also primarily her donor's and that there are very few lymphocytes and T-cells in her body (they live long, can cause graft-vs-host, marrow rejection and were purposely obliterated by the rabbit ATG).

We, and I mean the docs and our family, were all so happy with the findings about the cells IN her marrow and the cells being PRODUCED by her marrow. It also meant that she did not have an immunological rejection of her donor's stem cells. Whew! Plus, she tolerated the granulocyte (white cell) infusions well and has had an ANC above 1,000 for four out of the last five days, thanks to these donors. (I'm donating tomorrow now, because they didn't do all the lab testing on my blood they needed to.) These are great in the fight against the fungal infection. So what's the hold up with her body's production of its own white cell counts?

The doctors surmise that her counts haven't returned yet, because she got a low number of stem cells, and because her marrow may not be perfectly suited yet to house the new stem cells. Sometimes with MDS, monosomy 7 patients, the bone area that holds the marrow declines and becomes fibrous. In looking at her bone marrow biopsy prior to admission, the doctors said this shouldn't have been a problem in Brianna's case. However, they did say that because she had MDS that it may be taking her new stem cells longer to set up house there. Plus, she got a lot less stem cells in the first place. So they've told us we're going to be here for a while.

They've started giving Brianna G-CSF or granulocyte colony stimulating factor - the same drug they give those people who have donated their white cells. The drug is used in transplant patients to turn the baby cells in the marrow into white cells. She's only had two doses and she's had infusions of granulocytes, so it's hard to tell what her actually white count is without the addition of the white cell donors. In order to get a better idea, she won't get any white cells today and her blood will be drawn 48 hours after the last infusion of white cells, or granulocytes. That way we can determine if her marrow has actually started making more cells of its own.

In the meantime, the fungal infection will be tracked on Monday when she gets another CT scan. They will also scan her sinuses, abdomen, pelvis and chest to ensure there are no other additional fungal infecitons. We pray everything is clear.

The doctors have encourage her to get out of her room, even wearing a mask and enjoy the outdoors a bit. So just before it rained, we walked on the flowered patio outside our room and sat for a spell. Then along came a few raindrops and it was just so nice. Brianna really enjoyed it. (The whole time we are pulling her heavy IV pole around with it's four pumps!) Today, she got out on the roof and had to stop and rest a couple times before walking the perimeter of the roof garden, something she was able to do before three times. But the coughing is really taking a toll on her muslces. She is always sore and gets relief when she is sleeping. But she wakes every couple of hours coughing and so is quite tired.

She has also continued to use the incentive barometer, the apparatus that you inhale into to see how much air you can fill your lungs with. And the best news is that she has steadily made progress. The number continues to rise every couple of days. Add that and the fact that her kidneys are not so unhappy and the doctors are very pleased with her progress.

I told Brianna that she was my hero, because even when she doesn't want to do something, she does it anyway. All because she knows in the long run it will help her. She is like a fierce warrior, who doesn't think about pain, but just guts it because it's good for her. I don't know if I'd be able to withstand the misery she's endured day in and day out - coughing up mucous and blood.

I have to say that our son Trevor is also a fighter of sorts. This has been very difficult on him, but he has matured through it so far. It's been tough not having us there, but thank goodness my husband and my parents have been there and the Alamo/Danville Newcomer's Club group of volunteers known as Brianna's Boosters have helped tremendously. Thank you Sharon for your organization skills!!

Again, I can't stress enough how much the cards and letters encourage Brianna! And to my dear friends, your emails help me through the ups and downs. I love you for them. And for those of you I have not yet met but have sent notes and emails, thank you for thinking of us and keep us in your prayers. Brianna's dad and his family have also been so supportive of our sweet daughter. And of course, my dear husband, who works all day, visits us at night, picks up our dirty laundry and delivers mail, and then drives home a long distance to take care of Trevor and our dog. We are blessed to have such a wonderful support network. Your prayers are working, and we ask that you continue. Lots are still needed, to get us where we want to go.