Andrew had a lab draw yesterday. He has not had a shot of neupogen in over a week, so these results gave a good idea of the white blood cells his body is producing naturally. The numbers were low, with his white blood cell level at 1.3 and his neutrophils down to 600.
The doctors decided today to put him back on neupogen until our next appointment a week from Friday. At that point they will make a determination of where we go from here.
The news is pretty disappointing because it seemed that his body was producing a higher level of white blood cells on its own. We have now gone over a month with his platelet and hemoglobin level normal, and his white cell levels very low. It will be interesting to see what the doctors' opinions are.
Tuesday, September 21, 2010
Wednesday, September 15, 2010
Today's Lab Results
Andrew hasn't had any neupogen since Sunday(and only a .05mL dose then), so today's lab results are closer to what he is actually producing. His white blood cell count was at 2.4, and his neutrophil count was at 1500. These results are encouraging. The doctors have told us not to do any more neupogen injections through the weekend, and we will get another lab draw on Monday. By then, all residual white cells produced while on neupogen should be gone, and we can get an accurate assessment of what his body is naturally producing.
Friday, September 10, 2010
Rainbow Connection Walk for Kids
Our family is participating in the Rainbow Connection Walk for Kids tomorrow at the Detroit Zoo. We just received information on the event this week, so we haven't had much time to mention it or the fundraising that goes along with it.
The Rainbow Connection is a charitable organization that provides support and helps grant wishes to children in Michigan with life threatening illnesses. For those who want more information on the charity, you can visit their homepage here. Andrew qualifies for support from them because of his aplastic anemia. We have been talking to them recently, and it looks like they will be granting him a wish in the near future.
To those who would be interested in donating to the Rainbow Connection in Andrew's name, please visit his Rainbow Connection fundraising page here. They put together very nice(and expensive) wishes for children, and have a lot of available services for families going through difficult times. The fundraising page will be up long after the walk tomorrow, so you can make a donation afterwards if you want to.
The Rainbow Connection is a charitable organization that provides support and helps grant wishes to children in Michigan with life threatening illnesses. For those who want more information on the charity, you can visit their homepage here. Andrew qualifies for support from them because of his aplastic anemia. We have been talking to them recently, and it looks like they will be granting him a wish in the near future.
To those who would be interested in donating to the Rainbow Connection in Andrew's name, please visit his Rainbow Connection fundraising page here. They put together very nice(and expensive) wishes for children, and have a lot of available services for families going through difficult times. The fundraising page will be up long after the walk tomorrow, so you can make a donation afterwards if you want to.
No Major Changes
Andrew went back to U of M hospital today, and there were no major changes. His platelets and hemoglobin counts rose slightly again. The white blood cell count was 5.0, and the neutrophils were 4100, but that is probably due to the last neupogen injection he got on Wednesday evening.
The doctors want him to get a .05mL dose of neupogen Sunday, then will take another blood count Wednesday before doing any more injections. Hopefully, his body will produce enough white blood cells to keep his counts up.
Tomorrow, our family will be participating in a fundraising walk for the Rainbow Connection at the Detroit Zoo. We will have more information on that later.
The doctors want him to get a .05mL dose of neupogen Sunday, then will take another blood count Wednesday before doing any more injections. Hopefully, his body will produce enough white blood cells to keep his counts up.
Tomorrow, our family will be participating in a fundraising walk for the Rainbow Connection at the Detroit Zoo. We will have more information on that later.
Friday, September 3, 2010
More Neupogen Goodness
Andrew was getting shots of neupogen every other day this week, so his white blood cell counts were through the roof again yesterday. His white blood cell count was at 16.3, 10 times that of last week, and his neutrophils were at 14.7, almost 25 times last week. His hemoglobin level remained steady, and his platelets fell slightly, to 161,000. That seems to happen when he is on neupogen.
The doctors want him to take two shots this week, on Sunday and Wednesday, and we will be back at U of M hospital Friday. Hopefully the blood count results will give us a better idea of whether this will work, and how long before we can start reducing his cyclosporin dose. In the meantime, we are spending Labor Day weekend in Caseville.
The doctors want him to take two shots this week, on Sunday and Wednesday, and we will be back at U of M hospital Friday. Hopefully the blood count results will give us a better idea of whether this will work, and how long before we can start reducing his cyclosporin dose. In the meantime, we are spending Labor Day weekend in Caseville.
Monday, August 30, 2010
Update
Andrew had a blood draw last Thursday. His hemoglobin and platelets are in normal range. His white blood cells and neutrophils are still low. The doctors have put Andrew back on the neupogen shot. He takes the shot every other day. Andrew will have another lab draw done this Thursday and he goes to the doctor the following Friday.
Tuesday, August 24, 2010
Friday's Doctor Visit
Andrew went to the doctor last Friday. His lab results showed that his platelets dropped 40,000, his hemoglobin went up a little, and his white blood cells and neutrophils also went up. The doctor took him off the neupogen shot in order to see where his actual white blood cell and neutrophil counts are. We take Andrew to get a lab draw at Beaumont on Thursday. We will have more to report at that time.
Saturday, August 14, 2010
Thursday's Visit
On Thursday, Andrew went to U of M to meet with the Nephrology doctor. He also had his blood drawn for a lab. Andrew's platelets are still on the rise and are within normal levels. Andrew's hemoglobin is at 10.7 which is very close to normal. This is all great news. Unfortunately, Andrew's white blood cells and neutrophils are still low. The doctors feel he isn't responding fast enough so they are putting him back on the neupogen shot. He will take this daily for at least a week.
The nephrology doctor said everything is looking good with Andrew's blood pressure and kidneys. We will need to go back for a kidney ultrasound in about 3 months.
The nephrology doctor said everything is looking good with Andrew's blood pressure and kidneys. We will need to go back for a kidney ultrasound in about 3 months.
Friday, August 6, 2010
Lab draw
Andrew had a lab draw on Wednesday. His platelets went up about 5,000. His hemoglobin dropped slightly to 9.3. His white blood cells remained the same and his neutrophils dropped back under 500. The doctor wanted us to try one dose of the neupogen to see if that would stimulate his neutrophils. We gave Andrew the shot yesterday and he goes for another lab draw next Thursday.
Saturday, July 31, 2010
Andrew Becoming a Celebrity
We were contacted yesterday by Tarita, the woman who set up the bone marrow drive for Andrew at Living Word. They are having a blood and bone marrow drive at Crittenton Hospital in Rochester on August 19, and they want to use Andrew's picture for the fliers to advertise the event. We don't have a lot of details yet, but if you or someone you know was looking to join the marrow donor registry and couldn't for whatever reason, this will be another opportunity. Also, this date is past the eight week waiting period between blood donations for any who donated blood at Living Word and are looking to do it again.
The flier should be done soon, and we will pass it along when we get a copy. It should have all the necessary information for those looking to attend.
The flier should be done soon, and we will pass it along when we get a copy. It should have all the necessary information for those looking to attend.
Hemoglobin Goes Up for First Time
Yesterday was another full and eventful day at the hospital. Andrew's hemoglobin level went up on its own for the first time, to 9.9. 11-14 is the normal range, so he could be there soon. His platelets also went way up, to 169,000. 150,000 is the low end of the normal range, so his platelets are normal for the first time. His white blood cell level stayed the same, and is still pretty low at 1.1, but his neutrophils went up from 400 to 600. Over 500 is a level where they feel he is fine to fight infections without antibiotics, so the hematologists cancelled those again. We don't have to meet with them for three weeks now. They seem to be happy with the progress he is making.
In the afternoon we had a follow up appointment with Dr. Levine, the bone marrow transplant doctor we met with back in April. He was pleased with Andrew's progress as well. He told us that, since the same stem cells make platelets, red blood cells, and white blood cells, that his numbers, especially his platelet numbers, indicate that his body has the capacity to fully recover blood cell production. While he didn't completely rule out a future bone marrow transplant, he said that, with the production his body has shown, it is an option they would pursue only if something changed significantly in the future. Even then, he would probably do several tests before even considering a transplant again. Andrew's response so far has convinced him that immunosuppressive therapy, even if we had to do a second round of it, is preferable to transplant for him.
Dr. Levine said that they will probably keep Andrew on his full dose of cyclosporine until his white cells and neutrophils get back to normal ranges, then start to ween him off of it. He is recommending weening him off over a period of time of 9-12 months, slightly longer than normal. He said he does this to be a little more cautious and give his body extra time to reintroduce t-cells to the body, and especially the stem cells.
In the meantime, it looks like Andrew will not be back to school full time in the fall, due to possibilities of exposure from other students. He was fine with bringing him at times when Erin felt the general health of his classmates and the school was good. The problem with Andrew going to school full time is that he is more susceptible to viruses that others carry, and that, should he catch something from someone else, it would take him longer to recover. A cold that most people get over in a couple days may take him weeks. This should change as his blood counts continue to rise, and hopefully in the near future they will be high enough to send him back to school full time.
We don't have another visit with the hematologists until August 20, but they will take his blood counts on August 4 and August 11. We will keep you informed when we know what those are.
In the afternoon we had a follow up appointment with Dr. Levine, the bone marrow transplant doctor we met with back in April. He was pleased with Andrew's progress as well. He told us that, since the same stem cells make platelets, red blood cells, and white blood cells, that his numbers, especially his platelet numbers, indicate that his body has the capacity to fully recover blood cell production. While he didn't completely rule out a future bone marrow transplant, he said that, with the production his body has shown, it is an option they would pursue only if something changed significantly in the future. Even then, he would probably do several tests before even considering a transplant again. Andrew's response so far has convinced him that immunosuppressive therapy, even if we had to do a second round of it, is preferable to transplant for him.
Dr. Levine said that they will probably keep Andrew on his full dose of cyclosporine until his white cells and neutrophils get back to normal ranges, then start to ween him off of it. He is recommending weening him off over a period of time of 9-12 months, slightly longer than normal. He said he does this to be a little more cautious and give his body extra time to reintroduce t-cells to the body, and especially the stem cells.
In the meantime, it looks like Andrew will not be back to school full time in the fall, due to possibilities of exposure from other students. He was fine with bringing him at times when Erin felt the general health of his classmates and the school was good. The problem with Andrew going to school full time is that he is more susceptible to viruses that others carry, and that, should he catch something from someone else, it would take him longer to recover. A cold that most people get over in a couple days may take him weeks. This should change as his blood counts continue to rise, and hopefully in the near future they will be high enough to send him back to school full time.
We don't have another visit with the hematologists until August 20, but they will take his blood counts on August 4 and August 11. We will keep you informed when we know what those are.
Thursday, July 22, 2010
A litttle setback....
Today Andrew had a blood draw at Beaumont. We have good news and bad news. The good news is Andrew's platelets are still going up. They are at 135,000. The bad news is his hemoglobin dropped slightly and his white blood cells and neutrophils dropped a lot. They are back in unsafe/dangerous levels. As of right now, it appears the neupogen shot did not work. The doctor put Andrew back on three of the antibiotics and we now have to be careful about where we take him and we have to be careful to keep him away from people who are sick. We go to the doctor next Friday to see what all this means. We will keep you updated.
Friday, July 16, 2010
Still on track
Andrew's appointment at U of M went well today. His platelets are up to 100,000. This is a number we have not seen in a long time. His hemoglobin is 9.4, down a little from last week, but not enough to warrant a red blood transfusion. The doctor feels Andrew's bone marrow is making red blood cells, otherwise this number would have been much lower. His white blood cells and neutrophils are high (above normal levels). This means he does not need to take the neupogen shot any longer.
The next few weeks are a "wait-and-see". We are waiting to see if Andrew's white blood cells and neutrophil levels remain up without the help of the neupogen. If his numbers hold after a few weeks, he will be at the three month mark of the treatment. At the three month mark, the team of doctors meet to decide whether he will need a bone marrow transplant. If they feel he is responding well to the treatment, they will start slowly weening him off the cyclosporine (which is the anti-rejection medicine).
The doctors are pleased at how well he is responding to the treatment at this point. However, they always make it known to us that nothing is definite and it does not mean he is "cured". Things can change at any point. We are still very encouraged and very excited about the way the treatment is going. We are hopeful that Andrew is on the right track with the treatment and pray that all will go well for him in the future.
The next few weeks are a "wait-and-see". We are waiting to see if Andrew's white blood cells and neutrophil levels remain up without the help of the neupogen. If his numbers hold after a few weeks, he will be at the three month mark of the treatment. At the three month mark, the team of doctors meet to decide whether he will need a bone marrow transplant. If they feel he is responding well to the treatment, they will start slowly weening him off the cyclosporine (which is the anti-rejection medicine).
The doctors are pleased at how well he is responding to the treatment at this point. However, they always make it known to us that nothing is definite and it does not mean he is "cured". Things can change at any point. We are still very encouraged and very excited about the way the treatment is going. We are hopeful that Andrew is on the right track with the treatment and pray that all will go well for him in the future.
Friday, July 9, 2010
Positive news from Ann Arbor
Andrew had another doctor's appointment on Friday. His blood draw results were very positive. His platelets are up to 70,000, his hemoglobin is at 9.7, and his white blood cells and neutrophils are at normal levels. The doctor gave us the okay to go to Caseville this weekend and enjoy some time on the beach.
The doctor reduced the amount of neupogen Andrew has to take each day and next week he will take Andrew off the shot permanently. The doctor is hoping that Andrew will be able to sustain his neutrophils and white blood cells without the shot. If he is able to do this, the doctor feels a transplant will not be necessary. However, if Andrew's numbers drop back down without the medicine, a transplant will be considered. August will be Andrew's third month on this treatment. At this time all of his progress will be evaluated by the team of doctors working with us and him and a decision will be made regarding the bone marrow transplant. We will know more about the transplant at that time.
The doctor reduced the amount of neupogen Andrew has to take each day and next week he will take Andrew off the shot permanently. The doctor is hoping that Andrew will be able to sustain his neutrophils and white blood cells without the shot. If he is able to do this, the doctor feels a transplant will not be necessary. However, if Andrew's numbers drop back down without the medicine, a transplant will be considered. August will be Andrew's third month on this treatment. At this time all of his progress will be evaluated by the team of doctors working with us and him and a decision will be made regarding the bone marrow transplant. We will know more about the transplant at that time.
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