This has been an interesting night. Andrew woke up a little before 2AM vomiting in his bed. His temperature was 99.5, but within half an hour it went up to 102.8. We contacted the on call hematologist/oncologist at U of M, and she advised us to go to the nearest emergency room. She called ahead to Troy Beaumont, and they were ready for us before we got there.
They drew blood and did chest x-rays on Andrew. The blood counts came back fine(the white blood cells were even elevated), and the x-ray and examination were normal. They did a couple of blood cultures that we will find out about tomorrow. The nurses gave Andrew an anti-nausea medicine, an IV antibiotic, and Tylenol and Motrin for his fever. Around 6:30 the fever broke, and he was discharged a little after 7.
The doctors think that it is probably a viral infection, but it could also be due to a variety of other factors, such as remnants from the respiratory infection he had this past week, the flu shot booster he got this morning, or an infection in his line from when it was accessed Friday.
He is upstairs getting some sleep. Hopefully the antibiotic will take care of whatever the infection was, and he will be fine to go trick or treating around the block tonight.
Sunday, October 31, 2010
Friday, October 29, 2010
Today's Hospital Visit Not What We Expected
We went into today's visit at U of M Hospital expecting for the doctors to start reducing Andrew's cyclosporine dosage to begin weening him off of his medication. This is what Dr. Walkovich told us would happen at our last appointment at the beginning of the month. Since then, however, she has done more research on cases similar to Andrew's, and has decided that it would be better to keep him on a full dosage of cyclosporine until his neutrophil count is self-sustained(without use of neupogen) above 1500. Once his neutrophil count stays at that level, they will consider Andrew to have fully recovered because his platelet, hemoglobin(red cell), and neutrophil(white cell) counts will all be in normal ranges. Dr. Walkovich said that, in cases of cyclosporine reduction without full recovery, there is a high rate of full remission that may occur. Conversely, her research lead her to believe that the side effects from prolonged exposure to cyclosporine weren't as bad as she first thought. She even cited a kidney transplant patient who had been on cyclosporine for 12 years and had no major side effects. So they will keep Andrew on the same cyclosporine regimen he is on now until his neutrophil count rises, and, from this point forward, they are monitoring Andrew for any side effects from the cyclosporine.
The doctors also decided to try taking Andrew off neupogen and test his natural neutrophil production again. This is the third time are trying this. The first two times, his neutrophil level plummeted, but they feel his body may be producing more now than it was then. Since it take 10 days for all of the effects of neupogen to wear off, and he got his last injection Wednesday, we will do a lab draw next Monday, November 8, to see where his neutrophil production is at. Because there is a chance that this production will plummet again, we need to pull Andrew back out of school next week and until we get the lab results back. If the lab results are good this time, he will go without neupogen and try to fully recover. If they are low again, he will go back on neupogen and we will try again later. Either way, he will go back to school. This absence should be more temporary. Hopefully he is producing neutrophils at a level where he can be done with injections permanently.
Andrew and Madeline wore their Halloween costumes to the hospital today, and the child life specialists took all of the kids in the child infusion area trick or treating around the hospital. Different departments gave the kids different gifts and toys. One man in the adult infusion area who was there with his wife even started passing out dollar bills to them. Pirate Andrew and Princess Madeline had a blast.
The doctors also decided to try taking Andrew off neupogen and test his natural neutrophil production again. This is the third time are trying this. The first two times, his neutrophil level plummeted, but they feel his body may be producing more now than it was then. Since it take 10 days for all of the effects of neupogen to wear off, and he got his last injection Wednesday, we will do a lab draw next Monday, November 8, to see where his neutrophil production is at. Because there is a chance that this production will plummet again, we need to pull Andrew back out of school next week and until we get the lab results back. If the lab results are good this time, he will go without neupogen and try to fully recover. If they are low again, he will go back on neupogen and we will try again later. Either way, he will go back to school. This absence should be more temporary. Hopefully he is producing neutrophils at a level where he can be done with injections permanently.
Andrew and Madeline wore their Halloween costumes to the hospital today, and the child life specialists took all of the kids in the child infusion area trick or treating around the hospital. Different departments gave the kids different gifts and toys. One man in the adult infusion area who was there with his wife even started passing out dollar bills to them. Pirate Andrew and Princess Madeline had a blast.
Thursday, October 14, 2010
Andrew's test results
Andrew started his second week of school. He loves it! He has really enjoyed seeing all his friends and his teachers. On Tuesday, Andrew had a lab draw at Beaumont. We recently received his test results. His platelet and hemoglobin levels are still in normal ranges, and his white blood cell count and neutrophil count dropped slightly from last week. His white blood cell count is at 3.1 and his neutrophil count is at 2000. The doctors want us to continue giving Andrew two doses of neupogen each week. He goes back to U of M to see the doctor at the end of the month.
Tuesday, October 5, 2010
Andrew is back at school!
On Monday, Andrew was able to go back to school. He was very excited! Here is a picture of him standing outside of Living Word Lutheran School.
Friday, October 1, 2010
Moving On to the Next Phase of Treatment
Andrew had a lab draw at U of M Hospital today. His numbers were similar to other lab draws he has had 2 days after neupogen(he had an injection Wednesday evening). His platelet and hemoglobin levels are still in normal ranges, and his white blood cell count and neutrophil count were elevated by the neupogen(4.0 and 3000, respectively).
We then met with Dr. Walkovich. We talked about long term plans for Andrew's treatment. They are pleased with Andrew's progress so far, even though his stem cells haven't started full production of white blood cells yet. The doctors are also concerned about the long term effects of giving Andrew full doses of cyclosporine for more than six consecutive months(he has had it for about five so far). Therefore, they have decided that they will start weening him off of the cyclosporine beginning with his next hospital visit on October 29. The expectation is that, as the cyclosporine level in his body reduces and more t-cells are produced, that those t-cells will no longer attack the stem cells in his marrow that are producing blood cells. They will ween him off of cyclosporine very slowly, probably over 6 months or more, to help to keep this from happening. If he is weened completely off of cyclosporine and his body is still producing normal levels of blood cells, the overall treatment will be considered successful.
Because his body is still producing less than normal levels of white blood cells and neutrophils, which are a type of white cell, he will continue his routine of two neupogen injections a week to stimulate their production. Long term, the doctors are going to monitor his numbers, and when they feel like he may be producing more white cells naturally, we will probably suspend the neupogen and see where he is at. This will be a trial and error process. The doctors aren't concerned with long term effects of using neupogen, especially in the extremely small amounts he is getting it(.05mL twice a week). Also, there is no diminishing return on successive neupogen injections like there was on successive transfusions, so it should work the same no matter how long he takes it. There are people who need to take neupogen daily for years, so there is little danger of him continuing with it going forward. Ideally he wouldn't need it by this point, but doing it this way has fewer risks than continuing full doses of cyclosporine for more than six months.
Since the neupogen is elevating white cell levels and the red cell and platelet levels are back to normal, Dr. Walkovich and the other doctors have decided that Andrew can return to school. He is starting on Monday. His levels are high enough that his risk of virus or infection isn't much different than other children. It is time to integrate him back into normal life. He is very excited that he gets to return to Mrs. McDonald's class. He has been a little upset and moody when his two sisters are in school and he isn't, so this should help raise his spirits.
Andrew's next lab draw won't be until next Tuesday, October 12, and he doesn't have a hospital visit until Octobe 29, so things should be fairly quiet on the medical front for this month. Hopefully all goes well.
We then met with Dr. Walkovich. We talked about long term plans for Andrew's treatment. They are pleased with Andrew's progress so far, even though his stem cells haven't started full production of white blood cells yet. The doctors are also concerned about the long term effects of giving Andrew full doses of cyclosporine for more than six consecutive months(he has had it for about five so far). Therefore, they have decided that they will start weening him off of the cyclosporine beginning with his next hospital visit on October 29. The expectation is that, as the cyclosporine level in his body reduces and more t-cells are produced, that those t-cells will no longer attack the stem cells in his marrow that are producing blood cells. They will ween him off of cyclosporine very slowly, probably over 6 months or more, to help to keep this from happening. If he is weened completely off of cyclosporine and his body is still producing normal levels of blood cells, the overall treatment will be considered successful.
Because his body is still producing less than normal levels of white blood cells and neutrophils, which are a type of white cell, he will continue his routine of two neupogen injections a week to stimulate their production. Long term, the doctors are going to monitor his numbers, and when they feel like he may be producing more white cells naturally, we will probably suspend the neupogen and see where he is at. This will be a trial and error process. The doctors aren't concerned with long term effects of using neupogen, especially in the extremely small amounts he is getting it(.05mL twice a week). Also, there is no diminishing return on successive neupogen injections like there was on successive transfusions, so it should work the same no matter how long he takes it. There are people who need to take neupogen daily for years, so there is little danger of him continuing with it going forward. Ideally he wouldn't need it by this point, but doing it this way has fewer risks than continuing full doses of cyclosporine for more than six months.
Since the neupogen is elevating white cell levels and the red cell and platelet levels are back to normal, Dr. Walkovich and the other doctors have decided that Andrew can return to school. He is starting on Monday. His levels are high enough that his risk of virus or infection isn't much different than other children. It is time to integrate him back into normal life. He is very excited that he gets to return to Mrs. McDonald's class. He has been a little upset and moody when his two sisters are in school and he isn't, so this should help raise his spirits.
Andrew's next lab draw won't be until next Tuesday, October 12, and he doesn't have a hospital visit until Octobe 29, so things should be fairly quiet on the medical front for this month. Hopefully all goes well.
Tuesday, September 21, 2010
Roller Coaster Continues
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.
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.
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.
Subscribe to:
Posts (Atom)
