Tuesday, November 3, 2009
change of venue
due to the difficulties I, along with most of our visitors are having navigating this site, we have a new family page for Luke. Please visit us at Caringbridge.org You can type in lukekaspari (all one word) under the "Visit A Website" spot on the home page. Thank You for checking in:)
Sunday, November 1, 2009
Still Waiting....
Happy Sunday,
I can call it that despite the fact that Luke is "in" at the moment here at Loyola. High dose chemo is on his agenda for a couple of days. He is still beating those horrible side effects they warned us about and is feeling good. They just informed him they will be putting eyedrops in every four hours until we leave so his eyes aren't affected by the poison! (Those are my words) This kid is a tank! No complaints:) I am telling you, all those prayers from around the world are keeping him ahead of this nasty disease.
When I say still waiting, I'm referring to the results of the bone marrow tests. Hopefully we have an answer by the end of this week. Not knowing what is ahead of us is the worst feeling. There are only the two different roads, chemo or transplant, but we want to know now!
His doctor just came in and ran through the schedule for this visit, looks like he can go home Tuesday morning. He is so excited about that because that's when the shots at home begin (he just loves those!). I think he is more bummed about the fact that the doctor just told him no going out and very few visitors starting this Thursday, through the weekend and into the next week. His counts will be wiped out from this treatment. Oh I tell you, not fun.
On a lighter note... Bill and I were told there was an owl outside Luke's window for most of the day yesterday, so when we arrived last night we went right to the window to see what we could see. Sure enough up there on the beams above the duct work, there it was. We could see the outline. It stands about a foot tall, how exciting! I checked throughout the evening each time we woke up and sure enough it was still there! I was hoping it would stay until Nick and Cambrie arrived today to see it, but I was getting suspicious. Why hadn't it gone to eat? Why was it sitting up THERE when there is a forest preserve across the street! But, still I was hopeful... WOW, I awoke and it was still there... NO WONDER, It's plastic!!! Oh well, it gave us a good laugh. Our friends need to watch National Geographic more often!
On that note, we hope you laugh too today and that you all know how much you are truely appreciated. Thank you for checking in and caring about our Lukey.
Love, Tish
I can call it that despite the fact that Luke is "in" at the moment here at Loyola. High dose chemo is on his agenda for a couple of days. He is still beating those horrible side effects they warned us about and is feeling good. They just informed him they will be putting eyedrops in every four hours until we leave so his eyes aren't affected by the poison! (Those are my words) This kid is a tank! No complaints:) I am telling you, all those prayers from around the world are keeping him ahead of this nasty disease.
When I say still waiting, I'm referring to the results of the bone marrow tests. Hopefully we have an answer by the end of this week. Not knowing what is ahead of us is the worst feeling. There are only the two different roads, chemo or transplant, but we want to know now!
His doctor just came in and ran through the schedule for this visit, looks like he can go home Tuesday morning. He is so excited about that because that's when the shots at home begin (he just loves those!). I think he is more bummed about the fact that the doctor just told him no going out and very few visitors starting this Thursday, through the weekend and into the next week. His counts will be wiped out from this treatment. Oh I tell you, not fun.
On a lighter note... Bill and I were told there was an owl outside Luke's window for most of the day yesterday, so when we arrived last night we went right to the window to see what we could see. Sure enough up there on the beams above the duct work, there it was. We could see the outline. It stands about a foot tall, how exciting! I checked throughout the evening each time we woke up and sure enough it was still there! I was hoping it would stay until Nick and Cambrie arrived today to see it, but I was getting suspicious. Why hadn't it gone to eat? Why was it sitting up THERE when there is a forest preserve across the street! But, still I was hopeful... WOW, I awoke and it was still there... NO WONDER, It's plastic!!! Oh well, it gave us a good laugh. Our friends need to watch National Geographic more often!
On that note, we hope you laugh too today and that you all know how much you are truely appreciated. Thank you for checking in and caring about our Lukey.
Love, Tish
Friday, October 23, 2009
Starting Up the Blog
We have received lots of requests for updates on Luke's treatment and conditions, so we have started up a website and will try to make periodic updates.
So here is the latest on Luke:
Luke was diagnosed with B Cell ALL (Acute Lymphoblastic Leukemia) on Septeber 4th, 2009. He immediately began chemotherapy at Loyola University Hospital. The chemotherapy treatments have been very effective in putting him into remission. That's the good news! But, it is going to be a long haul.
Two weeks ago, we received some test results that were disheartening. Because Luke was part of a leukemia study, as part of the study, they performed genetic testing on his bone marrow and leukemia cells. Those test results revealed that he has a rare chromosomal mutation in his leukemic chromosomes called hypodiploid leukemia. This means that instead of having 46 full chromosomes in his leukemia cells (not in the rest of his body), he is missing chromosomes. We are awaiting further tests to confirm how many he is missing, we believe it's 10 total. His initial tests were not completely conclusive. Because of this finding, Luke's treatment protocol has been completely rearranged. Instead of an anticipated 3 years of chemotherapy and treatment, Luke is now facing 5 years of treatment. (The first two and a half years will be the most intensive). Next week, Luke, Cambrie, and Nick will all go to the hospital for a blood test to determine whether Cambrie or Nick are exact sibling matches for a bone marrow transplant. We have received so many generous and kind offers from family and friends who wish to be tested to find out if they are a donor match; however, at this time, the doctor's are indicating that they will only perform a bone marrow transplant with a sibling match. If Cambrie or Nick are a match, Luke will receive a transplant at Milwaukee Children's Hospital sometime around the beginning of December. He will be in the hospital for a little over a month, and then will remain in Milwaukee for close observation for another 2 months. Because we have not yet met with the transplant doctors (because we are still waiting to find out if Nick or Cambrie match), we don't have any details yet.
If neither Cambrie or Nick match, Luke will begin the more intensive chemotherapy regimen designed for those with hypodiploid leukemia.
Hypodiploid leukemia is a fairly new and rare condition so there is not a whole lot of information available. There has only been one scientific study published, but because Luke's situation is unique and because that study was very limited, the findings in the study don't directly correlate to Luke's age group and type of hypodiploidy. We continue to work very closely with Luke's doctors as well as the specialists who performed the study.
We appreciate everything that all of our friends and family have done for us. We know that your prayers are working because Luke has experienced very few side effects from the chemotherapy and is tolerating his treatments really well. He is upbeat and well enough to complain about having to do homework!
Luke will not be able to attend school this year because the cancer and chemotherapy reduce his body's ability to fight off infections. He is totally bummed that he can't play hockey either. He is however still able to hang out with friends (as long as they aren't sick), and is making the best of his situation. Luke's optimistic attitude is infectious!
We appreciate your continued support and prayers.
Hugs to you all!
Love,
Tisha
So here is the latest on Luke:
Luke was diagnosed with B Cell ALL (Acute Lymphoblastic Leukemia) on Septeber 4th, 2009. He immediately began chemotherapy at Loyola University Hospital. The chemotherapy treatments have been very effective in putting him into remission. That's the good news! But, it is going to be a long haul.
Two weeks ago, we received some test results that were disheartening. Because Luke was part of a leukemia study, as part of the study, they performed genetic testing on his bone marrow and leukemia cells. Those test results revealed that he has a rare chromosomal mutation in his leukemic chromosomes called hypodiploid leukemia. This means that instead of having 46 full chromosomes in his leukemia cells (not in the rest of his body), he is missing chromosomes. We are awaiting further tests to confirm how many he is missing, we believe it's 10 total. His initial tests were not completely conclusive. Because of this finding, Luke's treatment protocol has been completely rearranged. Instead of an anticipated 3 years of chemotherapy and treatment, Luke is now facing 5 years of treatment. (The first two and a half years will be the most intensive). Next week, Luke, Cambrie, and Nick will all go to the hospital for a blood test to determine whether Cambrie or Nick are exact sibling matches for a bone marrow transplant. We have received so many generous and kind offers from family and friends who wish to be tested to find out if they are a donor match; however, at this time, the doctor's are indicating that they will only perform a bone marrow transplant with a sibling match. If Cambrie or Nick are a match, Luke will receive a transplant at Milwaukee Children's Hospital sometime around the beginning of December. He will be in the hospital for a little over a month, and then will remain in Milwaukee for close observation for another 2 months. Because we have not yet met with the transplant doctors (because we are still waiting to find out if Nick or Cambrie match), we don't have any details yet.
If neither Cambrie or Nick match, Luke will begin the more intensive chemotherapy regimen designed for those with hypodiploid leukemia.
Hypodiploid leukemia is a fairly new and rare condition so there is not a whole lot of information available. There has only been one scientific study published, but because Luke's situation is unique and because that study was very limited, the findings in the study don't directly correlate to Luke's age group and type of hypodiploidy. We continue to work very closely with Luke's doctors as well as the specialists who performed the study.
We appreciate everything that all of our friends and family have done for us. We know that your prayers are working because Luke has experienced very few side effects from the chemotherapy and is tolerating his treatments really well. He is upbeat and well enough to complain about having to do homework!
Luke will not be able to attend school this year because the cancer and chemotherapy reduce his body's ability to fight off infections. He is totally bummed that he can't play hockey either. He is however still able to hang out with friends (as long as they aren't sick), and is making the best of his situation. Luke's optimistic attitude is infectious!
We appreciate your continued support and prayers.
Hugs to you all!
Love,
Tisha
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