It's been seven days since we were at our lowest emotional state over Brianna's condition. Since then, good news has trickled in over the week and yesterday afternoon brought even more.
For the past three days, Brianna has been getting G-CSF, a drug that stimulates the bone marrow to turn any baby cells into white blood cells. Plus she's gotten two infusions of blood donor white cells, or granulocytes (named thus because under a microscope smear you see granules). These infusions have skewed the numbers on how many white cells her own body is making, so it looks like a lot. But in fact, they are just blood donor cells that will die within 24 hours.
So she was purposely not given another granulocyte infusion for a day, so we could see what her body was doing. Tuesday night she got an infusion and at midnight afterward, her WBC (white blood count) was 4.2. On Wednesday morning, it naturally dropped to 4.0 as some of those donated cells died. It fell even further to 3.5 close to midnight that night. Then, at 6:30 on Thursday morning she got her third dose of G-CSF to help her body make its own white cells and later in the afternoon, her white count jumped to 5.0!!
When Lizi our nurse practitioner who takes care of us told us, I cried. I asked several times, "Can that be right?" How could it go from 3.5 at midnight to 5.0 without any infusions?? Well, her marrow must be kicking in!! Of course, our dear sweet daughter is skeptical just because she doesn't want to get her hopes up. And I must admit, as happy as I am, I am also fearful that it won't really be true. And, admittedly, a part of those cells could still be from the last white cell infusion. BUT, even if only a portion of that, say 2.0, was hers we would be so overjoyed!!
So it's been decided she won't get any more white cell infusions from volunteer donors, starting today. And it was nice that my donation yesterday morning will most likely be her last. I wasn't able to give her a huge bump - only 405 ml of white cells versus the typical 700 mls most male donors provide. But at least I was able to contribute.
I arrived at 7:30 am, after taking G-CSF about 12 hours before, to get my body making lots of extra white cells. About five minutes after they put the IVs into each of my arms, black splotches began to appear. I said, "Uh, I think I'm going to faint. I'm feeling really dizzy and faint." They immediately scrambled around to lower the head of my chair, told me to take deep breaths, turned off the machine and put some cold compresses on the back of my neck. They said it was a vaso vagel response to the needle punctures in my veins. I had no control over it. So after 10 minutes of getting me stable, the process began and worked until almost half way through. That's when my right arm stopped cooperating. After several more IV punctures to find another suitable vein for the return of my blood, we had to call it quits.
I had been sitting in the chair for almost three-and-a-half hours, and they said I need to be rehydrated. I kept apologizing about how difficult this was for them and they were very nice telling me it was no problem! I felt so bad. I had only given a little more than half of what they wanted.
The doctors said it was fine and that actually it was better they didn't get a huge amount. So Brianna got some of my white cells, and it only bumped her up a little bit - her WBC was 5.8 as of midnight that night. So I have a huge bruise on my right arm, but it did feel good to contribute. I also got a taste of what poor Brianna went through with all those weekly needle sticks from October to February. She is such a strong person! My experience was nothing compared to what she's endured.
Monday will most likely give us a real picture of where her white count stands. The doctors are pleased and she'll get G-CSF every other day, then taper off.
As for her lung infection, an x-ray yesterday showed that there is a little more fluid around it. This makes it difficult for her to practice her breathing - something she hates anyway because it causes her to cough. Her left lung is perfectly clear and we pray it stays that way. Now we hope for some miracles to be worked on her infection.
Surgery is looking more and more like a reality, but it really can't be done until her platelets start being produced. So once her white count is stable, we're looking for her platelets to come in. Unfortunately, it could take weeks. We are left playing the waiting game on her lung. I can't tell you how stressful it is to just wait.
So we're going to try to get out on the roof and walk around today. She is very naucous again, which is most likely the gunk from coughing and quite possibly a touch of graft-vs-host of the gut. But we've come so far in seven days, and we thank God for all the good news we've gotten in the past week. We just want it to continue, and hope for some healing on her lung.
A couple of my friends came by yesterday to say hello and gave me a hug. Ingrid and Tilma's visit was a total surprise, and was so nice. We chatted about our life here at the hospital, Brianna, and health. I got an update on all the tennis happenings in my area, and it was nice to talk about normal stuff, even for only an hour. They literally popped their heads into Brianna's room to say hello and gave her a very sweet Easter basket, and left because, Brianna didn't feel well. It was a nice break for me.
Later that afternoon, John came over with our clean laundry and mail. Brianna was still sleeping so we went to a little restaurant across the street. Again, it was so nice to get out just for an hour. We also celebrated the good news about her whtie count. When we got back, Brianna didn't even know we had left. She was still sleeping. Sometimes the guilt about leaving pulls so hard. But I am reminded that I need to replenish my spirits so I can be strong for her. I am looking to help replenish hers with an afternoon stroll outside with her in the sunshine and no mask.
Thank you all for helping us stay strong, to see the light at the end of the tunnel - no matter how small - and to keep believing.
Friday, March 30, 2007
Wednesday, March 28, 2007
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.
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.
Saturday, March 24, 2007
Day +31: A Likely Failed Graft, Buying Time & More Marrow
We are so fortunate to have so many friends, supporters and family who are with us every step of the way and cheering us on. You have no idea how much strength we get from your emails of love, encouragement, blessings and positive energy. Thank you.
By this time, Day +31, I expected Brianna and I to be getting ready to head to the local Ronald McDonald house. Instead, we face possibly another month or more in the hospital. Our beautiful daughter is such a fighter and has so much courage, I don't know if I could do what she has done and continues to endure.
The doctors are not certain, but they believe engraftment of her new marrow has failed. There is a slim chance her white count can begin to develop and increase in the next week or so, but just in case, they have started the process to contact the donor once again and get some more stems cells from her. It is all so complicated, but I will try to explain as best I can.
This whole problem, the doctors believe, developed because Brianna didn't get the amount of stem cells she should have received on her transplant day. That, coupled with the fact that they think her stem cells took a hit by a virus sometime around March 16, adds to the possible graft failure. We are still awaiting a lab report on the viral test to see. However, we may never know what happened. Now I say "possible" failure for a couple of reasons.
Some people get marrow stem cells from cord blood. This is the blood found in the umbilical cords of newly born babies. Parents consent to have the placenta and the cord donated for this purpose. As you can imagine, there's not a lot of stem cells in cord blood, so when it's used for a transplant, every precaution is taken not to damage those stem cells once they've been transfused into the recipient. But, because there are so many fewer cells to start with, engraftment usually doesn't take place until day +35 through day+42 (the day on which graft failure is indicated if no white cells come up). We're at day +31. So there is a remote chance that her cells will come up. Of course this is our prayer, but again we don't want to get our hopes up too much. (Lord knows how much we've been disappointed!)
On Thursday, Brianna's white count dropped to 0.3. It was decided to do another bone marrow biopsy. What they found was that the marrow did not have as many cells in it that it should have on day +28. So a chimerism study was ordered to see whose cells are in Brianna's marrow - are they all donor cells or have some of Brianna's cells survived her conditioning regimen (radiation and chemo) and taken over. We did find out that her blood does not have antibodies against the donor's stem cells. A good thing, but still doesn't give us the DNA of whose cells inhabit her marrow. We won't have an answer until Tuesday. Depending on the results will determine how the doctors proceed in making her whole again.
Interestingly, her white count on Friday went to 0.4 and then to 0.6 by Saturday morning. Of course, I was a little excited and so was the doctor, but Brianna said, "I don't want to get too excited yet." She is too wise for one so young. It dropped again to 0.4 later that day, so something is being made, but obvioulsy not enough and not like it should.
The doctors have asked for an urgent collection of stem cells, or marrow, from the original donor on April 2. This time, it will be of peripheral blood stem cells (PBSC). Rather than going in with a syringe and collecting the marrow through the back of the hip, the donor is given a drug to promote the growth of stem cells. Over a three-hour period, the donor will have an IV in each arm. One line will lead to a machine that will take out the stem cells in her circulating blood and the other line will return everything else. This process is quicker, is less invasive on the donor, and will provide a lot more stem cells than can be collected via the marrow.
This is where the chimerism study results of Brianna's marrow will be critical. If most of the cells they find currently in Brianna's marrow are the donor's, then Brianna will not have to go through any more immune suppression to accept a "boost" of more stem cells. If half of the cells are Brianna's and half the donor's, that will be problem. Normally, she would need immune suppression to accept more stem cells. That's how she got the fungal infection in the first place with her conditioning regimen back in mid-February. Suppressing her immune system to avoid GVHD for a week or two could give the fungal infection time to spread. She cannot afford this. So surgery has been discussed as a possibility between accepting new cells. But with such a low immune system, she would also be at great risk.
The major complicating factor in all this of course is the serious fungal infection in Brianna's right lung. Your right lung has three lobes, and the fungus - the most common species of aspergillus - has infected almost all of her bottom lobe and it is uncertain if her second lobe is involved. She also has fluid around the lung, which is partially obscuring the infected area and making it difficult to get a clear picture of the entire right side by CT scan. We've been told that without a high number of white cells, a fungal infection of this size is rarely resolved without some surgery down the line.
Before surgeons are called though, the best way to fight fungal infections is with a two-pronged approach using antifungal medications and the body's white blood cells - namely the neutrophils. Her body bascially doesn't have any to bring to the fight, so ensuring that the infection doesn't grow is a primary concern. At the same time, her new marrow needs to engraft so that she can continue to fight the infection. Thankfully, the infection is stable and has not grown in the past two weeks, even though she has few white cells.
In order to buy time, the doctors have decided to give Brianna granulocytes - the white cells and neutrophils of blood donors. These cells will rush to her infection and help reduce it. They had scheduled the first infusion on Thursday, but when the blood bank tested Brianna's blood with the white cells of the donor - Brianna's reacted. She had built up antibodies against that person's HLA type - a side effect of lots of transfusions. So partially matched HLA donors have to be called.
She got her first infusion last night, and she had only a few of the typical side effects and tolerated it pretty well. Of course, when you send a bunch of white cells to an invading bodily organism - fungus - the area becomes more inflamed, painful and produces much more mucous. So my dear daughter coughed up a lot of junk and even threw up a few times because her coughing was so strong. Over all, the docs were pleased with how well she did even though it made her feel a little more lousy in the end.
The doctors want her to have these infustions everyday for almost three weeks or until we find her counts have come in OR she gets another boost of marrow stem cells. This is all to buy time with the fungal infection, while we wait for some answers.
Since I gave Brianna half of her HLA type, I can provide one of her white cell infusions. My white cells should be accepted well by her body. So some of my blood was collected on Friday, to be sure I'm not fighting an infections or have any viruses I can pass onto her. I go in early Tuesday morning for the three-hour process of collecting my white cells, much in the same way they collect peripheral blood stem cells. My husband and Brianna's father will probably do the same, however Trevor cannot because he is under 18. Depending on the number of donors the Stanford blood bank may or may not have who will make a good match to Brianna's HLA type, we may hold a mini-white cell blood drive among family and friends.
The thing about these white cell donations is that they must be used within 24 hours of collection and the cells will only live for seven to 10 hours in Brianna's body. The infusion of cells she got last night at 6 pm have gone to battle and are already gone.
So now that I'm out of my medical explanation mode, I can now tell you how anxious we are about her. Brianna has such a strong spirit and is willing to put up with almost anything to get well. Her poor body has aches and pains all over due to muscle strain from coughing. Massages help, but last until the next coughing fit, which are often. She is not able to leave the room due to her low ANC, and so she can't walk around and get even a little exercise. Just feeling the sun and a gentle breeze on your skin does wonders and that little taste she got was a terrible tease. We pray everyday and night that something goes our way.
Because I was such a mess on Thursday and Friday and really didn't sleep, I asked my mother to stay with Brianna last night. I asked if it was okay with Brianna, and I think she could see my need for a good night's rest. My parents have done so much. My dear husband has been here for the past few days as well, making sure all our questions are answered, all avenues have been explored and that Brianna is getting the best of care. Brianna and I both feel his strength when he is near.
Our greatest wish is that her marrow begins to churn out white cells without any intervention. If I think too hard on all this and how she has changed from a vibrant teen, I am not myself and I don't function well. So many tears are dammed up inside of me and sometimes I have to leave her room in order to let some out. So I try to put it all out of mind and deal with the now in order to remain positive for my daughter. But your emails help ease my emotional pain and the cards and gifts for her help ease hers. Thank you and may God please bless my daughter with a healthy body.
By this time, Day +31, I expected Brianna and I to be getting ready to head to the local Ronald McDonald house. Instead, we face possibly another month or more in the hospital. Our beautiful daughter is such a fighter and has so much courage, I don't know if I could do what she has done and continues to endure.
The doctors are not certain, but they believe engraftment of her new marrow has failed. There is a slim chance her white count can begin to develop and increase in the next week or so, but just in case, they have started the process to contact the donor once again and get some more stems cells from her. It is all so complicated, but I will try to explain as best I can.
This whole problem, the doctors believe, developed because Brianna didn't get the amount of stem cells she should have received on her transplant day. That, coupled with the fact that they think her stem cells took a hit by a virus sometime around March 16, adds to the possible graft failure. We are still awaiting a lab report on the viral test to see. However, we may never know what happened. Now I say "possible" failure for a couple of reasons.
Some people get marrow stem cells from cord blood. This is the blood found in the umbilical cords of newly born babies. Parents consent to have the placenta and the cord donated for this purpose. As you can imagine, there's not a lot of stem cells in cord blood, so when it's used for a transplant, every precaution is taken not to damage those stem cells once they've been transfused into the recipient. But, because there are so many fewer cells to start with, engraftment usually doesn't take place until day +35 through day+42 (the day on which graft failure is indicated if no white cells come up). We're at day +31. So there is a remote chance that her cells will come up. Of course this is our prayer, but again we don't want to get our hopes up too much. (Lord knows how much we've been disappointed!)
On Thursday, Brianna's white count dropped to 0.3. It was decided to do another bone marrow biopsy. What they found was that the marrow did not have as many cells in it that it should have on day +28. So a chimerism study was ordered to see whose cells are in Brianna's marrow - are they all donor cells or have some of Brianna's cells survived her conditioning regimen (radiation and chemo) and taken over. We did find out that her blood does not have antibodies against the donor's stem cells. A good thing, but still doesn't give us the DNA of whose cells inhabit her marrow. We won't have an answer until Tuesday. Depending on the results will determine how the doctors proceed in making her whole again.
Interestingly, her white count on Friday went to 0.4 and then to 0.6 by Saturday morning. Of course, I was a little excited and so was the doctor, but Brianna said, "I don't want to get too excited yet." She is too wise for one so young. It dropped again to 0.4 later that day, so something is being made, but obvioulsy not enough and not like it should.
The doctors have asked for an urgent collection of stem cells, or marrow, from the original donor on April 2. This time, it will be of peripheral blood stem cells (PBSC). Rather than going in with a syringe and collecting the marrow through the back of the hip, the donor is given a drug to promote the growth of stem cells. Over a three-hour period, the donor will have an IV in each arm. One line will lead to a machine that will take out the stem cells in her circulating blood and the other line will return everything else. This process is quicker, is less invasive on the donor, and will provide a lot more stem cells than can be collected via the marrow.
This is where the chimerism study results of Brianna's marrow will be critical. If most of the cells they find currently in Brianna's marrow are the donor's, then Brianna will not have to go through any more immune suppression to accept a "boost" of more stem cells. If half of the cells are Brianna's and half the donor's, that will be problem. Normally, she would need immune suppression to accept more stem cells. That's how she got the fungal infection in the first place with her conditioning regimen back in mid-February. Suppressing her immune system to avoid GVHD for a week or two could give the fungal infection time to spread. She cannot afford this. So surgery has been discussed as a possibility between accepting new cells. But with such a low immune system, she would also be at great risk.
The major complicating factor in all this of course is the serious fungal infection in Brianna's right lung. Your right lung has three lobes, and the fungus - the most common species of aspergillus - has infected almost all of her bottom lobe and it is uncertain if her second lobe is involved. She also has fluid around the lung, which is partially obscuring the infected area and making it difficult to get a clear picture of the entire right side by CT scan. We've been told that without a high number of white cells, a fungal infection of this size is rarely resolved without some surgery down the line.
Before surgeons are called though, the best way to fight fungal infections is with a two-pronged approach using antifungal medications and the body's white blood cells - namely the neutrophils. Her body bascially doesn't have any to bring to the fight, so ensuring that the infection doesn't grow is a primary concern. At the same time, her new marrow needs to engraft so that she can continue to fight the infection. Thankfully, the infection is stable and has not grown in the past two weeks, even though she has few white cells.
In order to buy time, the doctors have decided to give Brianna granulocytes - the white cells and neutrophils of blood donors. These cells will rush to her infection and help reduce it. They had scheduled the first infusion on Thursday, but when the blood bank tested Brianna's blood with the white cells of the donor - Brianna's reacted. She had built up antibodies against that person's HLA type - a side effect of lots of transfusions. So partially matched HLA donors have to be called.
She got her first infusion last night, and she had only a few of the typical side effects and tolerated it pretty well. Of course, when you send a bunch of white cells to an invading bodily organism - fungus - the area becomes more inflamed, painful and produces much more mucous. So my dear daughter coughed up a lot of junk and even threw up a few times because her coughing was so strong. Over all, the docs were pleased with how well she did even though it made her feel a little more lousy in the end.
The doctors want her to have these infustions everyday for almost three weeks or until we find her counts have come in OR she gets another boost of marrow stem cells. This is all to buy time with the fungal infection, while we wait for some answers.
Since I gave Brianna half of her HLA type, I can provide one of her white cell infusions. My white cells should be accepted well by her body. So some of my blood was collected on Friday, to be sure I'm not fighting an infections or have any viruses I can pass onto her. I go in early Tuesday morning for the three-hour process of collecting my white cells, much in the same way they collect peripheral blood stem cells. My husband and Brianna's father will probably do the same, however Trevor cannot because he is under 18. Depending on the number of donors the Stanford blood bank may or may not have who will make a good match to Brianna's HLA type, we may hold a mini-white cell blood drive among family and friends.
The thing about these white cell donations is that they must be used within 24 hours of collection and the cells will only live for seven to 10 hours in Brianna's body. The infusion of cells she got last night at 6 pm have gone to battle and are already gone.
So now that I'm out of my medical explanation mode, I can now tell you how anxious we are about her. Brianna has such a strong spirit and is willing to put up with almost anything to get well. Her poor body has aches and pains all over due to muscle strain from coughing. Massages help, but last until the next coughing fit, which are often. She is not able to leave the room due to her low ANC, and so she can't walk around and get even a little exercise. Just feeling the sun and a gentle breeze on your skin does wonders and that little taste she got was a terrible tease. We pray everyday and night that something goes our way.
Because I was such a mess on Thursday and Friday and really didn't sleep, I asked my mother to stay with Brianna last night. I asked if it was okay with Brianna, and I think she could see my need for a good night's rest. My parents have done so much. My dear husband has been here for the past few days as well, making sure all our questions are answered, all avenues have been explored and that Brianna is getting the best of care. Brianna and I both feel his strength when he is near.
Our greatest wish is that her marrow begins to churn out white cells without any intervention. If I think too hard on all this and how she has changed from a vibrant teen, I am not myself and I don't function well. So many tears are dammed up inside of me and sometimes I have to leave her room in order to let some out. So I try to put it all out of mind and deal with the now in order to remain positive for my daughter. But your emails help ease my emotional pain and the cards and gifts for her help ease hers. Thank you and may God please bless my daughter with a healthy body.
Thursday, March 22, 2007
Brianna's White Count Drops, Graft Failure Possible
All last night I prayed that Brianna's white count would rise today, and I believed it would. After all, she was off the Sirolimus for seveal days now. But when I heard that it had dropped again to 0.3, a flood of tears came from me. Thankfully, I was at the nurse's station when I learned and not in the room. I had told Brianna that I was going to get coffee and I left so I could call my husband and sob.
It seems that we are not getting a break, no matter what it is! When I told Brianna, we held each other and cried. I got into her bed with her, held her and tried to comfort her. But, I was feeling beaten down too, and I'm not the one who has been coughing up spots of blood and having a side that is very painful due to fluid build-up around the lung and who has to live with this for the rest of her life.
So at this point, our main concern is no longer her lung, but the marrow itself. Her white count is the best defense against the fungal infection. But that has not gotten better and in fact has gotten worse. The question of whether the new stem cells are present in her marrow and have multiplied is the big issue. If so, then they are still being surpressed by one of the drugs she's on. If not, then obviously the cells did not graft and she needs another infusion of donor cells.
There are two reasons grafts don't take. One is that the body's own immune system has rejected the new stem cells. In Brianna's case that is really hard to believe because she's gotten radiation and chemotherapy to kill all her immune system. The second reason for a failed graft is that the new stem cells take a hit by an invading virus and are so depleted, they do not recover. Thus, a rise in white count and then a continual dip. So far we're awaiting a test results to rule out the virus.
The true test though is to see what's going on in her marrow. So this afternoon, she'll be getting a bone marrow biopsy. The doctors will be able to see a very preliminary smear on a slide several hours after the procedure and let us know what they find. But the real story will be found in the bone core and when its de-calcified. It should tell us what cells, if any, have made house there. If it's empty, then more stem cells are needed. If the marrow has lots of healthy cells, then the cell production is still being suppressed by some other drug she is taking. Of course, Brianna's primary worry is that she'll have to go through the terrible experience of radiation and high dose chemotherapy again. That is a worry of ours too.
In the meantime, we've requested that the donor be contacted immediately to ensure her availability. She is an international donor and we worry that with the time difference and distance, we may not get more stem cells soon if she's not contacted right away. Of course, we also have to hope that the donor is kind hearted and willing to go through the process again for us.
In clinical terms, if Brianna's counts are going down on Day +29, it means her graft has failed. Getting more marrow will be a priority. As for her lung, she's in such a tenuous position and the likelihood that she will need surgery to remove a portion o it looks more and more like a reality.
I am at such a loss, I cannot even say how sad I feel. That we have had to face every obstacle that usually happens to only a small percentage going through transplant is unbelievably frustrating. Brianna is doing what she has to in order to get well. Her spirits are not high, but she has not hit rock bottom. I'm afraid that is where I am. Writing this blog to keep you all informed is very helpful, and it is therapeutic for me. I know I sound as if I have lost my faith, and maybe I have. But I must at least be strong for Brianna and that is what I am doing in her presence. But if you look for me when I'm out of her room, don't be surprised if my eyes are red and I am wiping my nose. This is the hardest thing we have ever had to face.
It seems that we are not getting a break, no matter what it is! When I told Brianna, we held each other and cried. I got into her bed with her, held her and tried to comfort her. But, I was feeling beaten down too, and I'm not the one who has been coughing up spots of blood and having a side that is very painful due to fluid build-up around the lung and who has to live with this for the rest of her life.
So at this point, our main concern is no longer her lung, but the marrow itself. Her white count is the best defense against the fungal infection. But that has not gotten better and in fact has gotten worse. The question of whether the new stem cells are present in her marrow and have multiplied is the big issue. If so, then they are still being surpressed by one of the drugs she's on. If not, then obviously the cells did not graft and she needs another infusion of donor cells.
There are two reasons grafts don't take. One is that the body's own immune system has rejected the new stem cells. In Brianna's case that is really hard to believe because she's gotten radiation and chemotherapy to kill all her immune system. The second reason for a failed graft is that the new stem cells take a hit by an invading virus and are so depleted, they do not recover. Thus, a rise in white count and then a continual dip. So far we're awaiting a test results to rule out the virus.
The true test though is to see what's going on in her marrow. So this afternoon, she'll be getting a bone marrow biopsy. The doctors will be able to see a very preliminary smear on a slide several hours after the procedure and let us know what they find. But the real story will be found in the bone core and when its de-calcified. It should tell us what cells, if any, have made house there. If it's empty, then more stem cells are needed. If the marrow has lots of healthy cells, then the cell production is still being suppressed by some other drug she is taking. Of course, Brianna's primary worry is that she'll have to go through the terrible experience of radiation and high dose chemotherapy again. That is a worry of ours too.
In the meantime, we've requested that the donor be contacted immediately to ensure her availability. She is an international donor and we worry that with the time difference and distance, we may not get more stem cells soon if she's not contacted right away. Of course, we also have to hope that the donor is kind hearted and willing to go through the process again for us.
In clinical terms, if Brianna's counts are going down on Day +29, it means her graft has failed. Getting more marrow will be a priority. As for her lung, she's in such a tenuous position and the likelihood that she will need surgery to remove a portion o it looks more and more like a reality.
I am at such a loss, I cannot even say how sad I feel. That we have had to face every obstacle that usually happens to only a small percentage going through transplant is unbelievably frustrating. Brianna is doing what she has to in order to get well. Her spirits are not high, but she has not hit rock bottom. I'm afraid that is where I am. Writing this blog to keep you all informed is very helpful, and it is therapeutic for me. I know I sound as if I have lost my faith, and maybe I have. But I must at least be strong for Brianna and that is what I am doing in her presence. But if you look for me when I'm out of her room, don't be surprised if my eyes are red and I am wiping my nose. This is the hardest thing we have ever had to face.
Wednesday, March 21, 2007
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.
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.
Sunday, March 18, 2007
Day +25: It's been a rough few days
We were so excited to see Brianna's white counts climbing and her ANC rising to 900. We thought only a few more days and she could have salads and fresh fruits and vegetables again. But as usual with this procedure, it's two steps forward one step back. In the last few days, it's felt like a giant leap back.
Brianna's white counts had reached 1.0, but slowly dipped back to .5 yesterday. John and Trevor were visiting and we thought it would be so great to go take a walk on the roof. However since her white count dropped, so did her ANC. She couldn't leave the room again. We were both disappointed. Her white count today is back to 0.6, and she is still not able to leave her room. But at least it is climbing again. We were warned this would happen, but on top of all that is happening it's so easy to get disheartened.
Next came more information about her lung infection. It's been up and down with how she feels and the amount of coughing she is doing. One of the doctors yesterday morning during rounds mentioned that she might have to have surgery to remove part of her lung. That was the first time this was mentioned and it frightened Brianna terribly not to mention me. He also said that instead of doing her incentive barometer breathing three times a day, she should be doing it 10 times an hour. Again that was the first time anyone told us that! It was so discouraging to hear. But Brianna was even more determined to use the breathing appartus.
The infectious disease doctor came in this morning to say that they hope to have the mold pinpointed by tomorrow to determine a more focused treatment. Right now she's on broad spectrum antifungals. What's so hard to accept is that only 10-15% of transplant patients get fungal infections. I'm left asking why this on top of everything else?
So Brianna's spirits were so low yesterday and mine weren't far behind. She feels like she is making no progress on expanding her lungs and for me, I am broken hearted that she has to endure all of this. It feels like it is all piling up. Add the fact that I think one of my teeth is absessed and the car we drove here died in the hospital parking lot, and it about sent me over the edge.
Then last night, one of the residents came in and said that they think Brianna has Syndrome of Inappropriate Anti-diuretic Hormone. In other words, even though her body is retaining water, her kidneys are spilling out electrolytes, protein and such as if she were dehyrated. So now she has to limit what she drinks to only 2 ounces of water an hour. This way they can regulate her water and sodium intake. We are in our first day of this restriction and she is doing fine for now. Her sodium levels in her blood and urine are holding. SIADH can be triggered by a lung infection and "hello" Brianna's poor body was prime for it. They've also added a wonderful little nugget of restrictions - potassium. She is allowed only 1 gram, or 1,000 mg, of potassium for the whole day! Try looking up the potassium content of foods and you'll find that this is a very difficult diet to follow - especially for a teenager.
So please continue to say prayers for us. Sharon, Sandy, Christy, Cory, Pam, Ingrid, Kitty, Jojo, Britt and Ann ~ your emails and comments mean the world to us. We have read them and cried, because they have come when we've been so low and needed encouragement. A big hug to all of you who have sent cards, letters and gifts - family and friends alike. They bring Brianna much joy. And to Brianna's Boosters who have helped us tremendously. We are so grateful to all of you who are helping us through this. We continue on and pray for a better turn in the road ahead.
Brianna's white counts had reached 1.0, but slowly dipped back to .5 yesterday. John and Trevor were visiting and we thought it would be so great to go take a walk on the roof. However since her white count dropped, so did her ANC. She couldn't leave the room again. We were both disappointed. Her white count today is back to 0.6, and she is still not able to leave her room. But at least it is climbing again. We were warned this would happen, but on top of all that is happening it's so easy to get disheartened.
Next came more information about her lung infection. It's been up and down with how she feels and the amount of coughing she is doing. One of the doctors yesterday morning during rounds mentioned that she might have to have surgery to remove part of her lung. That was the first time this was mentioned and it frightened Brianna terribly not to mention me. He also said that instead of doing her incentive barometer breathing three times a day, she should be doing it 10 times an hour. Again that was the first time anyone told us that! It was so discouraging to hear. But Brianna was even more determined to use the breathing appartus.
The infectious disease doctor came in this morning to say that they hope to have the mold pinpointed by tomorrow to determine a more focused treatment. Right now she's on broad spectrum antifungals. What's so hard to accept is that only 10-15% of transplant patients get fungal infections. I'm left asking why this on top of everything else?
So Brianna's spirits were so low yesterday and mine weren't far behind. She feels like she is making no progress on expanding her lungs and for me, I am broken hearted that she has to endure all of this. It feels like it is all piling up. Add the fact that I think one of my teeth is absessed and the car we drove here died in the hospital parking lot, and it about sent me over the edge.
Then last night, one of the residents came in and said that they think Brianna has Syndrome of Inappropriate Anti-diuretic Hormone. In other words, even though her body is retaining water, her kidneys are spilling out electrolytes, protein and such as if she were dehyrated. So now she has to limit what she drinks to only 2 ounces of water an hour. This way they can regulate her water and sodium intake. We are in our first day of this restriction and she is doing fine for now. Her sodium levels in her blood and urine are holding. SIADH can be triggered by a lung infection and "hello" Brianna's poor body was prime for it. They've also added a wonderful little nugget of restrictions - potassium. She is allowed only 1 gram, or 1,000 mg, of potassium for the whole day! Try looking up the potassium content of foods and you'll find that this is a very difficult diet to follow - especially for a teenager.
So please continue to say prayers for us. Sharon, Sandy, Christy, Cory, Pam, Ingrid, Kitty, Jojo, Britt and Ann ~ your emails and comments mean the world to us. We have read them and cried, because they have come when we've been so low and needed encouragement. A big hug to all of you who have sent cards, letters and gifts - family and friends alike. They bring Brianna much joy. And to Brianna's Boosters who have helped us tremendously. We are so grateful to all of you who are helping us through this. We continue on and pray for a better turn in the road ahead.
Wednesday, March 14, 2007
Day +21: Brianna's Strength Continues
Brianna continues to cough and struggle with the infection in her lung, but she is a fighter! She is determined to move about and stretch, even though she doesn't feel like it, and to use her incentives barometer, despite the pain. (The incentives barometer measures how deep of a breath you can take by blowing into a tube and raising a floating disk. It also helps expand the lungs, something her right lung needs!)
The doctors are narrowing in on what is causing the problem in her lung. Yesterday, Brianna had a bronchoscopy with lavage, which is not a fancy parisian bath, but is a bath of sorts . A small scope, or camera, was manuevered up her nose and down into her lung. She was sedated so she really didn't feel anything. I was able to stay in the room with her and watch the whole procedure. A very good and funny respiratory pulmonologist Dr. Cornfield made Brianna feel comfortable about the process and what the goal was - to squirt saline into her lung and then suction it out in hopes of collecting some of the infectious cells now residing there. The procedure went very smoothly and Brianna was great! A little sedation can go a long way in making you feel no pain and remember little. But the doctors were confident they got some of the targeted cells.
While I was watching, the nurse was asked if I was okay and if I would faint. There was no way I was going to leave and be given the opportunity to see the culprit behind my daughter's misery! Her poor lung has what looks like a big, gooey booger clogging one of her lung's passageways. I watched the saline being flushed in and then it being suctioned. The staff was really great with her and did a fantastic job. The samples were taken to the lab where they are put into cultures to see if anything grows. Twenty hours later, nothing has come up positive, but it could take as along as two weeks.
The best news so far is that her white blood count has risen to 0.9! Normal is 4.0 - 11. She's getting there! And, the more good news is the infection fighting part of her white blood cells, her Abolute Neutrophil Count or ANC, is 800!! It hasn't been that high in six months or more!! (Remember when it's below 500 your at high risk for infection, and when it's below 200 your body can't fight its own bacteria. Normal is 1.8 - 8.0.) So this is the best news yet!!
With a higher white count, we're hoping her body is beginning to get the upper hand on her infection. Her spriits were brightened even more when she was told she can wear a mask in the hall and go to the unit's outdoor patio and take off her mask and walk around outside!! Isn't that great? ALso, she was so excited to hear that when her ANC is above 1,000, she can have fresh fruits and veggies again! Yeah!!!! And, she can start going to school again here at the hospital - wearing a mask of course.
So we're hoping that each day brings us closer to her getting over this infection and her new marrow making more and more white blood cells and increasing her ANC to help in the fight. Thankfully, we're on an upswing on our journey.
The doctors are narrowing in on what is causing the problem in her lung. Yesterday, Brianna had a bronchoscopy with lavage, which is not a fancy parisian bath, but is a bath of sorts . A small scope, or camera, was manuevered up her nose and down into her lung. She was sedated so she really didn't feel anything. I was able to stay in the room with her and watch the whole procedure. A very good and funny respiratory pulmonologist Dr. Cornfield made Brianna feel comfortable about the process and what the goal was - to squirt saline into her lung and then suction it out in hopes of collecting some of the infectious cells now residing there. The procedure went very smoothly and Brianna was great! A little sedation can go a long way in making you feel no pain and remember little. But the doctors were confident they got some of the targeted cells.
While I was watching, the nurse was asked if I was okay and if I would faint. There was no way I was going to leave and be given the opportunity to see the culprit behind my daughter's misery! Her poor lung has what looks like a big, gooey booger clogging one of her lung's passageways. I watched the saline being flushed in and then it being suctioned. The staff was really great with her and did a fantastic job. The samples were taken to the lab where they are put into cultures to see if anything grows. Twenty hours later, nothing has come up positive, but it could take as along as two weeks.
The best news so far is that her white blood count has risen to 0.9! Normal is 4.0 - 11. She's getting there! And, the more good news is the infection fighting part of her white blood cells, her Abolute Neutrophil Count or ANC, is 800!! It hasn't been that high in six months or more!! (Remember when it's below 500 your at high risk for infection, and when it's below 200 your body can't fight its own bacteria. Normal is 1.8 - 8.0.) So this is the best news yet!!
With a higher white count, we're hoping her body is beginning to get the upper hand on her infection. Her spriits were brightened even more when she was told she can wear a mask in the hall and go to the unit's outdoor patio and take off her mask and walk around outside!! Isn't that great? ALso, she was so excited to hear that when her ANC is above 1,000, she can have fresh fruits and veggies again! Yeah!!!! And, she can start going to school again here at the hospital - wearing a mask of course.
So we're hoping that each day brings us closer to her getting over this infection and her new marrow making more and more white blood cells and increasing her ANC to help in the fight. Thankfully, we're on an upswing on our journey.
Monday, March 12, 2007
Hanging in there despite the pain
I am having a really hard time watching my daughter not only go through a transplant, but also have to deal with an infection in her lung. Several times today I've been asked how we're doing. Brianna is truly hanging in there. She's really loaded up with lots of pain meds, and so she is always drowsy. When she's more awake, the stabbing pain in her side comes and goes. So it is better that she be "out" for most of the day. For me, I am barely holding back the floodgate of tears. And what's so difficult is that there is nothing I can do for her! It's just not right that a 17-year-old should have to go through something like this and have a double whammy with a mysterious, extremely painful infection.
At this point, the doctors still do not know what it is that she has in her lung. She had a CT scan today and they were hopeful it would be more telling. But what it showed was either a fungal or bacterial infection, and most like a slow growing one.
Several infectious disease docs were called in to consult and they said that she is not showing the classic signs of infection. She has not had fevers and other signs of one either. Of course, there is the pain which says something is wrong. It stems from the fact that the infection is close to the lining of her lung. That lining is very sensitive, and if inflamed - ouch is one of the words that would describe it.
Since the CT scan was not definitive, which we were warned may be the case, the only real way to determine the cause is to get a sample of it. Well she's not coughing anything up. Therefore, between 10:30 am and 11 am, she will be having a bronchoscopy. Basically, she will sedated, and then put a tiny camera up her nasal cavity and down into her lung. Some saline will be sprayed in the lung and then suctioned out. We pray that tiny pieces of whatever is causing all her misery will be suctioned along with the saline. It will then be taken to the lab where it will be grown in cultures. They will be testing for all bacterias and fungi.
She is on some broad spectrum antibiotics and only one antifungal. But the infectious disease docs felt that those should be tweaked a bit to provide even broader coverage. So, she's been started on several new drugs in addition to the seemingly 20 other's she is already on. No matter what, we still won't have any answers or see any improvement until later in the week, maybe not even until following one. We've been told that the new drugs and the cultures will take at least 24 hours to 72 hours to see any affect.
Throughout this, the doctors here are really wonderful and caring. Dr. Rajni Agarwal was here early this morning, and then came to see us about 8:30 tonight. She's been here all day and then some. She is such a concerned physician and told us that even if we feel alone, we are not. She is having the nurses call her every six hours throughout the night to ensure that Brianna's electrolytes are in balance. (Over the weekend there was some disagreement as to whether she is retaining water or if she's simply just gained weight. Steroids can give you a ferocious appetite, which they did for Brianna. But, she was given some diuretics that dried her out too much.) So they are closely monitoring her fluid intake and output - oh yes everything here is measured! She along with the others who are taking care of us make us feel like we are people they care about and not just some faceless patient to try new treatment approaches on. She wanted us to know personally that she is going to find out what is causing all this and it will be taken care of!
Some good news is all this is Brianna's white counts were .6 on Sunday and Monday, and we're hoping they'll increase to help in the fight. Also, an ultrasound was taken of her internal organs and they all look great, even though she's getting lots of medications that are hard on the liver and kidneys. We were happy to hear this.
The notes and cards, and comments here on this blog, continue to give us strength to weather this stormy journey. Thank you and bless you for those. We pray for Brianna's continued courage and healing and for the doctors to determine what is behind the attack on Brianna's right lung. All your prayers and positive thoughts go along way for us and we are so grateful for them. Hug your families and don't take life for granted. Each day is precious.
At this point, the doctors still do not know what it is that she has in her lung. She had a CT scan today and they were hopeful it would be more telling. But what it showed was either a fungal or bacterial infection, and most like a slow growing one.
Several infectious disease docs were called in to consult and they said that she is not showing the classic signs of infection. She has not had fevers and other signs of one either. Of course, there is the pain which says something is wrong. It stems from the fact that the infection is close to the lining of her lung. That lining is very sensitive, and if inflamed - ouch is one of the words that would describe it.
Since the CT scan was not definitive, which we were warned may be the case, the only real way to determine the cause is to get a sample of it. Well she's not coughing anything up. Therefore, between 10:30 am and 11 am, she will be having a bronchoscopy. Basically, she will sedated, and then put a tiny camera up her nasal cavity and down into her lung. Some saline will be sprayed in the lung and then suctioned out. We pray that tiny pieces of whatever is causing all her misery will be suctioned along with the saline. It will then be taken to the lab where it will be grown in cultures. They will be testing for all bacterias and fungi.
She is on some broad spectrum antibiotics and only one antifungal. But the infectious disease docs felt that those should be tweaked a bit to provide even broader coverage. So, she's been started on several new drugs in addition to the seemingly 20 other's she is already on. No matter what, we still won't have any answers or see any improvement until later in the week, maybe not even until following one. We've been told that the new drugs and the cultures will take at least 24 hours to 72 hours to see any affect.
Throughout this, the doctors here are really wonderful and caring. Dr. Rajni Agarwal was here early this morning, and then came to see us about 8:30 tonight. She's been here all day and then some. She is such a concerned physician and told us that even if we feel alone, we are not. She is having the nurses call her every six hours throughout the night to ensure that Brianna's electrolytes are in balance. (Over the weekend there was some disagreement as to whether she is retaining water or if she's simply just gained weight. Steroids can give you a ferocious appetite, which they did for Brianna. But, she was given some diuretics that dried her out too much.) So they are closely monitoring her fluid intake and output - oh yes everything here is measured! She along with the others who are taking care of us make us feel like we are people they care about and not just some faceless patient to try new treatment approaches on. She wanted us to know personally that she is going to find out what is causing all this and it will be taken care of!
Some good news is all this is Brianna's white counts were .6 on Sunday and Monday, and we're hoping they'll increase to help in the fight. Also, an ultrasound was taken of her internal organs and they all look great, even though she's getting lots of medications that are hard on the liver and kidneys. We were happy to hear this.
The notes and cards, and comments here on this blog, continue to give us strength to weather this stormy journey. Thank you and bless you for those. We pray for Brianna's continued courage and healing and for the doctors to determine what is behind the attack on Brianna's right lung. All your prayers and positive thoughts go along way for us and we are so grateful for them. Hug your families and don't take life for granted. Each day is precious.
Saturday, March 10, 2007
Day +17: More White Cells
Our days have been up and down since Thursday, with Brianna's bouts of coughing subsiding and then picking up. As long as we stay on top of the pain in her side with her pain medication, she's okay. But at least once a day now, it seems we get behind in keeping her pain down. The pain meds have been increased steadily during the day and at night since that awful day on Wednesday when she was hurting terribly. I just hate to see her this way and the doctors are doing all they can to keep her comfortable.
For the last several days, her white count stayed at 0.2. But today, they've increased to a whopping 0.4! We know it's not much, but it's a huge leap to us!! This means her new marrow is starting to pick up its production of white cells. The other lines, red blood cells and platelets, will take several more weeks before we see signs they are starting to come in. But we're happy about this bit of news.
Unfortunately, her pnuemonia has not gotten better. It doesn't look like it's gotten worse, either. But it would be nice to see some improvement. Brianna had another x-ray this morning, and the film looks pretty much the same. However, she didn't take as big a breath when she had the one done on Thursday, so it's a bit difficult to see if there are any subtle differences.
At this point, it's still not clear whether it's viral, bacterial or fungal. But the docs are guessing it's fungal. She's been on some heavy antibiotics and antiviral drugs and all of the cultures they've taken have come back negative for either of these. We are still waiting on the results of two tests, both of which will come back on Monday. One of them is a blood test to see if it's a fungal infection. She is taking an antifungal drug, just so all the bases are covered. And, it's been decided that on Monday she'll have a CT scan of her sinuses, chest, abdomen and pelvic areas. Fungal infections have a very distinct look on CTs, and since they'll be doing one of her sinuses and lungs, they decided to make sure nothing was going on in her stomach or intestines while she was under the microscope, so to speak.
Normally, we all have an immune system to keep any viral or fungal infections in check. We have antibodies to certain viruses, and most of us carry aspergillus in our lungs. Its a fungus that is found in the soil and is everywhere, blowing in the wind. But because Brianna's immune system has been nil for the past two months, any virus or fungus would have the opportunity to erupt. Add the fact that she's on a steroid, which suppress all immunities, and it makes a good environment for opportunistic growth.
So she is being weaned off the steroid and will be put on another immune suppressive drug - sirolimus. The steroid was being used to avoid graft-versus-host disease. She still has to avoid GVHD, so this new drug does the same thing. But it does not suppress the part of her immune system that fights fungal infections. So some of those new white cells can do their job. Of course, there's always side effects with many of these drugs. Sirolims is hard on the kidneys. She'll be checked often to ensure that it does not build up and cause any problems.
I just pray that we'll have a clearer picture of what's going on in her body and of the best course of action. Send some of those thoughts and prayers of healing. I know this is just one more bump in our long journey, but we'd sure love a little more smoother sailing.
For the last several days, her white count stayed at 0.2. But today, they've increased to a whopping 0.4! We know it's not much, but it's a huge leap to us!! This means her new marrow is starting to pick up its production of white cells. The other lines, red blood cells and platelets, will take several more weeks before we see signs they are starting to come in. But we're happy about this bit of news.
Unfortunately, her pnuemonia has not gotten better. It doesn't look like it's gotten worse, either. But it would be nice to see some improvement. Brianna had another x-ray this morning, and the film looks pretty much the same. However, she didn't take as big a breath when she had the one done on Thursday, so it's a bit difficult to see if there are any subtle differences.
At this point, it's still not clear whether it's viral, bacterial or fungal. But the docs are guessing it's fungal. She's been on some heavy antibiotics and antiviral drugs and all of the cultures they've taken have come back negative for either of these. We are still waiting on the results of two tests, both of which will come back on Monday. One of them is a blood test to see if it's a fungal infection. She is taking an antifungal drug, just so all the bases are covered. And, it's been decided that on Monday she'll have a CT scan of her sinuses, chest, abdomen and pelvic areas. Fungal infections have a very distinct look on CTs, and since they'll be doing one of her sinuses and lungs, they decided to make sure nothing was going on in her stomach or intestines while she was under the microscope, so to speak.
Normally, we all have an immune system to keep any viral or fungal infections in check. We have antibodies to certain viruses, and most of us carry aspergillus in our lungs. Its a fungus that is found in the soil and is everywhere, blowing in the wind. But because Brianna's immune system has been nil for the past two months, any virus or fungus would have the opportunity to erupt. Add the fact that she's on a steroid, which suppress all immunities, and it makes a good environment for opportunistic growth.
So she is being weaned off the steroid and will be put on another immune suppressive drug - sirolimus. The steroid was being used to avoid graft-versus-host disease. She still has to avoid GVHD, so this new drug does the same thing. But it does not suppress the part of her immune system that fights fungal infections. So some of those new white cells can do their job. Of course, there's always side effects with many of these drugs. Sirolims is hard on the kidneys. She'll be checked often to ensure that it does not build up and cause any problems.
I just pray that we'll have a clearer picture of what's going on in her body and of the best course of action. Send some of those thoughts and prayers of healing. I know this is just one more bump in our long journey, but we'd sure love a little more smoother sailing.
Thursday, March 8, 2007
What a difference a day makes!
Our sweet daughter is back from a horrible day of pain just yesterday. She was made so much more comfortable last night with a big increase in her continuous pain medicine rate. That, coupled with an increase in the PCA button, meant that if she felt the slightest amount of pain, she could give herself a bump in pain meds. And, she could do it as often as every eight minutes. It made her sleepy, which was just fine with her last night!
Today, she is much better, even though the chest x-ray shows no change from yesterday. The doctors say that as long as the x-ray doesn't look worse, they are happy. Usually, it takes several days for these type of infections to clear up. So were expecting no big changes in the next day.
Also, her white blood count continues to stay at 0.2, and those weird rashes keep appearing and disappearing. The doctors have also told us they are not concerned with them unless they stick around.
Every day brings something new and thankfully today brought some relief from all the pain of yesterday.
Today, she is much better, even though the chest x-ray shows no change from yesterday. The doctors say that as long as the x-ray doesn't look worse, they are happy. Usually, it takes several days for these type of infections to clear up. So were expecting no big changes in the next day.
Also, her white blood count continues to stay at 0.2, and those weird rashes keep appearing and disappearing. The doctors have also told us they are not concerned with them unless they stick around.
Every day brings something new and thankfully today brought some relief from all the pain of yesterday.
Wednesday, March 7, 2007
Day +14: Buttons and Counts
Brianna had a very rough night last night. The pain in her right side began to become unbearable. She was coughing and later had a difficult time moving. It all stems from the infection in her right lung. There is no way to tell whether it is viral, bacterial or fungal. They've taken every kind of swab and blood test they can, but we won't see results for several days. So at this point, she's on a very strong antibiotic for any bacteria and was put on an antiviral medication. This evening, they'll start the antifungal medicine. They are very careful to cover everything - and we thank God for that. But it may get worse before it gets better, for a good reason.
Yesterday, her blood counts showed that her white cells were 0.2. White cells are the first line to start being produced by the new marrow. Since her pre-conditioning regimen, Brianna's white count has been at 0.1 - which basically means no white cells. Today at day +14, these white cells could actually start coming in - and in fact we think they are. For the past two days it's measured 0.2. Now we're not jumping up and down yet. It may linger at that rate for the next week. But these new white cells could actually be contributing to her pain in her lung.
Because white cells fight infections, these new cells may all be going to her lung to fight whatever she has. When your body wages a war, the white cells will cause inflammation of that area. So this could be why she feels worse, but in fact she may be getting better. Crazy huh?
Also, today we learned that the count the lab is getting may not be truly accurate. Yes, there is a margin of error, but that's not the intriguing thing here. What could actually be happening is that most of her new white cells are all going to her lung and not floating around in her peripheral blood. Well they measure her white count based on what's in her peripheral blood. If they're all camping out in another part of the body, you're not going to see how many are really there.
Another reason they suspect her counts are coming in is she's had a mysterious rash appearing every now and again throughout the day on her ankles and calves. We've seen some pinkish spots appear on her shoulder, her arm and thigh. But it never remains long. This could be a first indication of graft-versus-host disease (GVHD). Typically, transplant patients get it in the liver, on the skin or in the gut. Getting a little of it is thought of as a good thing, because it means the new marrow is aggressive. Brianna has been on lots of meds for the past two weeks and will continue to be on new ones to minimize the degree of GVHD she gets.
For now, we're just trying to make her comfortable by easing the pain. I've never had pneumonia, so I don't know what it's like. But from her winces and yelps of pain, I can tell this is really hurts. The hard part for me is I just can't do anything to take it away. I am able to help her when she needs to go to the bathroom, but the stabbing pain she gets comes and goes and nothing I do makes it better.
The doctors and nurses have told her it's okay to push the button on her patient controlled analgesic machine. She has finally gotten used to using it today whenever she feels an inkling of pain and when she needs to get up. The only other thing we can do is say some prayers that whatever she has is cleared up soon so we can see her bright smile again and she can get back to those days of sheer boredom in the hospital.
Yesterday, her blood counts showed that her white cells were 0.2. White cells are the first line to start being produced by the new marrow. Since her pre-conditioning regimen, Brianna's white count has been at 0.1 - which basically means no white cells. Today at day +14, these white cells could actually start coming in - and in fact we think they are. For the past two days it's measured 0.2. Now we're not jumping up and down yet. It may linger at that rate for the next week. But these new white cells could actually be contributing to her pain in her lung.
Because white cells fight infections, these new cells may all be going to her lung to fight whatever she has. When your body wages a war, the white cells will cause inflammation of that area. So this could be why she feels worse, but in fact she may be getting better. Crazy huh?
Also, today we learned that the count the lab is getting may not be truly accurate. Yes, there is a margin of error, but that's not the intriguing thing here. What could actually be happening is that most of her new white cells are all going to her lung and not floating around in her peripheral blood. Well they measure her white count based on what's in her peripheral blood. If they're all camping out in another part of the body, you're not going to see how many are really there.
Another reason they suspect her counts are coming in is she's had a mysterious rash appearing every now and again throughout the day on her ankles and calves. We've seen some pinkish spots appear on her shoulder, her arm and thigh. But it never remains long. This could be a first indication of graft-versus-host disease (GVHD). Typically, transplant patients get it in the liver, on the skin or in the gut. Getting a little of it is thought of as a good thing, because it means the new marrow is aggressive. Brianna has been on lots of meds for the past two weeks and will continue to be on new ones to minimize the degree of GVHD she gets.
For now, we're just trying to make her comfortable by easing the pain. I've never had pneumonia, so I don't know what it's like. But from her winces and yelps of pain, I can tell this is really hurts. The hard part for me is I just can't do anything to take it away. I am able to help her when she needs to go to the bathroom, but the stabbing pain she gets comes and goes and nothing I do makes it better.
The doctors and nurses have told her it's okay to push the button on her patient controlled analgesic machine. She has finally gotten used to using it today whenever she feels an inkling of pain and when she needs to get up. The only other thing we can do is say some prayers that whatever she has is cleared up soon so we can see her bright smile again and she can get back to those days of sheer boredom in the hospital.
Tuesday, March 6, 2007
Day +13 & Lots of Love
Brianna was greeted this weekend by her grandparents, John and Trevor, who all came by on Saturday. We all took turns visiting so that not too many people were in the room at the same time. (The hepa-filtered rooms are meant to circulate the air every eight minutes with two to three people in the room. More people means less air circulation. We always try to err on the side of caution.) So it was great for Brianna to see them and really special for all of us to be together.
They brought some mail and one envelope contained lots of "Get Well" cards from Brownie Troop 2517. You see, we met a sweet 8-year-old little girl who was getting treated for a rare immune deficiency while Brianna was getting all those transfusions at John Muir Hospital in Walnut Creek. Caroline and her mother Terri shared a treatment room with us a couple of times and it was wonderful getting to know these two special ladies. Caroline shared with her Brownie Troop all that Brianna had to go through to get well. The Troop was also visited by one of our favorite nurses, Nancy Horan, who told the girls about Caroline's disorder and her treatment. One thing led to another, and they all drew beautiful cards for Brianna. It was so sweet!! Brianna enjoyed them so much.
My parents visit was also nice, because Brianna allowed my mom to stay with her for two days, while I got to head home and relax a bit. John and I went to dinner and then on Sunday, we all went to see the movie Wild Hogs. It was just what the doctor ordered! The movie is hilarious. It felt good to be home, but odd because Brianna wasn't there. You never really can relax until you know your children are healthy and safe.
When I got back to the hospital on Monday, Brianna was coughing. The doctors think she has a virus in her lung. That's what happens when your immune system is dropped to zero. Any type of virus floating around in your body can erupt, because all those good antibodies have been suppressed. She had a chest x-ray which did show a spot on her lung with some inflammation. She was also given an antiviral medication and got swabbed a second time. The first swabs taken came back negative for the viruses they checked. The second test will look for lots of other viruses.
Please say some prayers that she rides this out okay. Her new marrow should start making white blood cells between day +14 and +21. That should help, but until then we wait. She is in a bit of pain when she coughs, but some pain medication has helped. She is taking lots of deep breaths to also ease the soreness. Again, we continue to play the waiting game.
Friday, March 2, 2007
From One Survivor to Another
Brianna had an exciting day yesterday! Yul Kwon the $1 million winner of last season's TV hit show Survivor visited us. He is such a humble, warm and generous man. We are avid Survivor fans and have watched most of the seasons of the show. Brianna asked questions about what it was like, and Yul sat and chatted with us for close to an hour. We told him that we had rooted for him during the show and that he was such a great player. He brought Brianna two t-shirts, a hat for Trevor and a signed picture. He wrote:
Brianna, It was so awesome to meet you - you really touched me with your spirit and energy. I'm glad to have you as my friend. All the best to you and I will see you soon! - Yul Kwon
Wow! What a great guy! Thanks to my hubby, who made it all happen too! He met him through his work and they got to talking about bone marrow donation and ultimately about Brianna's condition. You see, Yul is using some of his fame to bring greater awareness of the bone marrow donor registry, especially among people of ethnic descent. My husband learned that Yul had a friend in college who passed away and needed a bone marrow transplant. At the time, Yul told us that he wanted to do something then to get more donors registered. But it was not meant to be until some years later. Now, he has donated some of his winning, a little of his fame and much of his time to the cause. We are so appreciative of his visit. He also met several other patients on the floor, and the unit was abuzz with talk of the Survivor winner.
The excitement spilled into this morning too. We showed pictures to all the doctors and residents during their morning rounds. What a generous man and a great way for a teenager to spend some of her time in the hospital.
Thank you Yul! And, thank you my dear husband.
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