Pray for Grant

February 14 2013

Posted by Melanie McTaggart on Thursday, February 14, 2013
David here.  

We have now received all results from the most recent bone marrow testing.  The first 2 tests(flow cytometry and FISH) were negative.  That means Grant is still in remission which is obviously good news.  

 The results from the final test (PCR) were a little bit ambiguous.  The test is much more sensitive than the other two and is designed to detect the presence of the abnormal BCR-ABL gene in the bone marrow, and if present, the level of BCR-ABL.    BCR-ABL  is the gene that forms when the 9 and 22 chromosomes exchange parts of their DNA,  which results in the 9, 22 translocation also known as the Philadelphia chromosome.   The  BCR-ABL gene generates a protein(tyrosine kinase) that can cause leukemia cells to develop in the bone marrow.  Gleevec, the drug Grant took for 3 years, is a tyrosine kinase inhibitor.   

When Texas Childrens does the PCR  test they run it 5 times to ensure quality control.  Grant's was reported as "no BCR-ABL detected" on 4 of the 5 tests.  On one of the 5 it was reported as "very low level of BCR-ABL detected, below quantifiable level."  Before Dr. Dreyer called us with the results she talked to the head of the pathology lab at TCH who has interpreted nearly all of Grant's PCR tests.   Both Dr. Dreyer and the pathologist believe that this result is effectively the same as negative and is nothing to worry about.  They say it has no clinical significance. The pathologist told Dr. Dreyer that this result means nothing clinically,  but because there was some activity on one of the 5 tests, they are obligated to report it this way.    Dr Dreyer reminded us that they have had Ph+ ALL patients, one of whom had a bone marrow transplant,  remain in remission permanently despite having occasional  "positive"  PCR tests.  Also, studies have shown that about 25% of the general population of  people who will never get leukemia  test positive for BCR-ABL by  PCR.  

Dr Dreyer told us that this does not change the plan. Grant will continue to have his blood monitored monthly and his bone marrow monitored quarterly.  

We were very disappointed that the PCR result wasn't "0" as it has been on the last 3.  It felt like a punch in the gut yesterday and it will no doubt cause us to worry about Grant even more. As parents you just want a guarantee that everything will be ok.  The frustrating truth is there are no such guarantees.   We just have to focus on the fact that Dr.Dreyer  and the pathologists believe this is nothing to worry about.  

We are so excited to be going back to Orlando in March.  As soon as we land we are headed straight to Give Kids The World Village to see Grant's star and to spend some time at what we think is the greatest place on earth.  We  also get to volunteer there one of the mornings we are in Orlando.   

David 
  


  



 

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Melanie McTaggart I am the proud mom and Claire and Grant. I am so blessed to have them in my life!

February 14 2013

Posted by Melanie McTaggart on Thursday, February 14, 2013
David here.  

We have now received all results from the most recent bone marrow testing.  The first 2 tests(flow cytometry and FISH) were negative.  That means Grant is still in remission which is obviously good news.  

 The results from the final test (PCR) were a little bit ambiguous.  The test is much more sensitive than the other two and is designed to detect the presence of the abnormal BCR-ABL gene in the bone marrow, and if present, the level of BCR-ABL.    BCR-ABL  is the gene that forms when the 9 and 22 chromosomes exchange parts of their DNA,  which results in the 9, 22 translocation also known as the Philadelphia chromosome.   The  BCR-ABL gene generates a protein(tyrosine kinase) that can cause leukemia cells to develop in the bone marrow.  Gleevec, the drug Grant took for 3 years, is a tyrosine kinase inhibitor.   

When Texas Childrens does the PCR  test they run it 5 times to ensure quality control.  Grant's was reported as "no BCR-ABL detected" on 4 of the 5 tests.  On one of the 5 it was reported as "very low level of BCR-ABL detected, below quantifiable level."  Before Dr. Dreyer called us with the results she talked to the head of the pathology lab at TCH who has interpreted nearly all of Grant's PCR tests.   Both Dr. Dreyer and the pathologist believe that this result is effectively the same as negative and is nothing to worry about.  They say it has no clinical significance. The pathologist told Dr. Dreyer that this result means nothing clinically,  but because there was some activity on one of the 5 tests, they are obligated to report it this way.    Dr Dreyer reminded us that they have had Ph+ ALL patients, one of whom had a bone marrow transplant,  remain in remission permanently despite having occasional  "positive"  PCR tests.  Also, studies have shown that about 25% of the general population of  people who will never get leukemia  test positive for BCR-ABL by  PCR.  

Dr Dreyer told us that this does not change the plan. Grant will continue to have his blood monitored monthly and his bone marrow monitored quarterly.  

We were very disappointed that the PCR result wasn't "0" as it has been on the last 3.  It felt like a punch in the gut yesterday and it will no doubt cause us to worry about Grant even more. As parents you just want a guarantee that everything will be ok.  The frustrating truth is there are no such guarantees.   We just have to focus on the fact that Dr.Dreyer  and the pathologists believe this is nothing to worry about.  

We are so excited to be going back to Orlando in March.  As soon as we land we are headed straight to Give Kids The World Village to see Grant's star and to spend some time at what we think is the greatest place on earth.  We  also get to volunteer there one of the mornings we are in Orlando.   

David