Pray for Grant

Friday March 4 2011

Posted by Melanie McTaggart on Friday, March 4, 2011

David here

We attended the rodeo last night courtesy of  Leukemia Lymphoma Society. Before it started,Grant, along with many other kids,  was able to go down on the rodeo floor and do some roping and horseback riding with one of the cowboys.  He  had an absolute blast with his new cowboy pal, Michael.  Melanie and I had to fight back tears watching Grant have so much fun and feeling like a regular kid.

We stayed for the entire rodeo and for some of the Sugarland performance which was great. Grant and Claire liked the chuckwagon races  the best.  Claire danced her $%^%$ off during the Sugarland show.  She had everyone around us cracking up.  Grant had no nap yesterday so he was pooped out by the time Sugarland hit the stage.

I did want to share one story from last night. One of the rodeo clowns came up to us and asked if we remembered him from last year.  Of course we did because he was so nice to Grant at last year's rodeo when Grant was bald and was so weak he could hardly walk.  He pulled out his cell phone and showed us a picture of Grant that he has kept on his phone since last year's rodeo.  He told me he looks at it whenever he's feeling sorry for himself.  I cant tell you how moving that was for Melanie and me to hear him say that. 

As we've said from the beginning, this is a roller coaster ride.  We've had highs and lows recently.  The PCR test done at Texas Children's showed 0 detection of  Philadelphia Chromosome.  That was a high.    Then we found out his liver function tests were markedly elevated and we had to hold his Gleevec medication and run other tests.  That was a low. Then we found out the other liver tests were ok. That was a high.    Then we found out that the PCR test done at MD Anderson showed "very low level of Philadelphia chromosome, less than .01%"  That result is the same as its been for many months which the doctors have told us is so low it is "essentially the same thing as 0."   Given the fact that we had the "0" result from TCH, this felt like a step back even though it probably isnt.  Its just as parents you want 0, not essentially the same thing as 0.  

So, as for now, we're still holding Gleevec(but giving the other chemo) until Monday when he gets checked again. Hopefully his liver function tests will have gone down enough to re-start Gleevec.



 

About Me


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

Friday March 4 2011

Posted by Melanie McTaggart on Friday, March 4, 2011

David here

We attended the rodeo last night courtesy of  Leukemia Lymphoma Society. Before it started,Grant, along with many other kids,  was able to go down on the rodeo floor and do some roping and horseback riding with one of the cowboys.  He  had an absolute blast with his new cowboy pal, Michael.  Melanie and I had to fight back tears watching Grant have so much fun and feeling like a regular kid.

We stayed for the entire rodeo and for some of the Sugarland performance which was great. Grant and Claire liked the chuckwagon races  the best.  Claire danced her $%^%$ off during the Sugarland show.  She had everyone around us cracking up.  Grant had no nap yesterday so he was pooped out by the time Sugarland hit the stage.

I did want to share one story from last night. One of the rodeo clowns came up to us and asked if we remembered him from last year.  Of course we did because he was so nice to Grant at last year's rodeo when Grant was bald and was so weak he could hardly walk.  He pulled out his cell phone and showed us a picture of Grant that he has kept on his phone since last year's rodeo.  He told me he looks at it whenever he's feeling sorry for himself.  I cant tell you how moving that was for Melanie and me to hear him say that. 

As we've said from the beginning, this is a roller coaster ride.  We've had highs and lows recently.  The PCR test done at Texas Children's showed 0 detection of  Philadelphia Chromosome.  That was a high.    Then we found out his liver function tests were markedly elevated and we had to hold his Gleevec medication and run other tests.  That was a low. Then we found out the other liver tests were ok. That was a high.    Then we found out that the PCR test done at MD Anderson showed "very low level of Philadelphia chromosome, less than .01%"  That result is the same as its been for many months which the doctors have told us is so low it is "essentially the same thing as 0."   Given the fact that we had the "0" result from TCH, this felt like a step back even though it probably isnt.  Its just as parents you want 0, not essentially the same thing as 0.  

So, as for now, we're still holding Gleevec(but giving the other chemo) until Monday when he gets checked again. Hopefully his liver function tests will have gone down enough to re-start Gleevec.