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.
Saturday, July 31, 2010
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.
Friday, July 2, 2010
Very Positive News
After Andrew's blood counts came in today, the doctors came to see us. They had big smiles on their faces, and Dr. Boxer shook our hands and congratulated us. It turns out that the neupogen, which stimulates the body to make white blood cells, was worth every penny, because in one week Andrew's white blood cell count shot up from 600 to 10,900, and his neutrophil level went from 100 to 8400. These levels are well within normal ranges for a healthy person. They might even be a little on the high side. The neupogen worked so much better than the doctors expected that they decided to reduce the dosage for the injections.
Andrew's platelet level is up another 7,000, to 45,000. His red blood cell level went down, so they decided to give him a blood transfusion today. He had an echocardiogram today to check his heart function and they drew some extra blood for tests in case a bone marrow transplant becomes necessary in the future. We are now just waiting for the transfusion to finish up, and then we will be on our way home.
Everyone is extremely encouraged by today's blood test results. The treatments seem to be extremely effective, and his marrow is producing cells at significant rates as the immunosuppressive therapy progresses. Andrew's platelet levels haven't been this high since our first visit to Beaumont the Friday after Easter. Now that his white blood cell levels are this high, his risk for infection or has gone way down. The risk is low enough that the doctors have suspended use of all of the antibiotics he was taking. Andrew can get back to more normal activities, and doesn't need to be as isolated for now. Even though the white cell production is being artificially enhanced, it makes things much easier on all of us.
Andrew's platelet level is up another 7,000, to 45,000. His red blood cell level went down, so they decided to give him a blood transfusion today. He had an echocardiogram today to check his heart function and they drew some extra blood for tests in case a bone marrow transplant becomes necessary in the future. We are now just waiting for the transfusion to finish up, and then we will be on our way home.
Everyone is extremely encouraged by today's blood test results. The treatments seem to be extremely effective, and his marrow is producing cells at significant rates as the immunosuppressive therapy progresses. Andrew's platelet levels haven't been this high since our first visit to Beaumont the Friday after Easter. Now that his white blood cell levels are this high, his risk for infection or has gone way down. The risk is low enough that the doctors have suspended use of all of the antibiotics he was taking. Andrew can get back to more normal activities, and doesn't need to be as isolated for now. Even though the white cell production is being artificially enhanced, it makes things much easier on all of us.
Subscribe to:
Posts (Atom)
