Pray for Grant

February 14 2013

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 
  


  

 

Dec. 18, 2012 - Grant loses his first tooth!

December 19, 2012

It has been at least 2 years since "Stephy," Claire's tooth fairy first paid a visit to our home. Well, Stephy's best friend, "Meredith” is Grant's tooth fairy and is making her first visit to our home tonight - this time for Grant!

Grant lost his first tooth before school this morning. He was elated! Today was also his big Christmas Program day and he got to sing 5 songs and wear a Christmas shirt during his program. In the life of a Kindergartner - this is a huge deal!

I have to say, this...


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November 6 2012

November 6, 2012
David here.  Its been a few months since we updated the blog.  As most of you know, no news is usually good news.  We just received the results from Grant's last bone marrow tests.  No leukemia cells or evidence of Philadelphia chromosome detected!  This was great news!   Grant will continue to have his bone marrow tested every 3 months for the next year and a half.  He will also have his blood tested monthly.

Grant's mobility continues to improve very gradually.  He is taking a gymnastics cla...
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About Me


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

DAY 1 Make a Wish Trip to Disney

July 18, 2012
Hey everyone!

Grant started his Make-a-Wish trip yestereday. His wish was to go to Disney World and his wish was granted. Yesterday we left the house at 3:50 a.m. and landed in Orlando at 9:15 a.m. We are staying at a place called Give Kids the World. It is a resort only for kids with life threatning illnesses. We spend the day there and had a blast. This place is amazing. To see pictures from the 1st day, please click the link below. After horse back riding and breakfast, we are headed to Magic Kingdom.

DAY 1.
http://www.youtube.com/watch?v=b1d1m-tOvRA&feature=plcp

Please pray that we all stay healthy while we are hear and that Claire and Grant have a great time.

Love,
Melanie

 

July 10 2012

July 10, 2012
David here.   Today is Grant's 6th birthday.  Melanie and I are so thankful that he continues to do well.  When he was diagnosed just over 3 years ago, the doctors told us that he had a less than 50-50 chance to make it to his 6th birthday.  We have a long way to go, but today is a day to celebrate.

Grant's birthday party was Saturday.  Many of his classmates, friends and family were able to attend.  Melanie planned a fantastic party, highlighted by Darth Vader and a Jedi performing and puttin...
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May 7 2012

May 7, 2012
David here.   We received great news today when Dr. Dreyer called to tell me that Grant's PCR test (the most sensitive of the 3 bone marrow tests they run) was completely negative.  In the past, the results have been "very low level detected, below level of quantification."  The doctors told us that those results were "practically  the same" as completely negative.    Nevertheless, it feels great to get the completely negative result.   Grant will continue on Gleevec (2.5 pills per day) for a...
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February 1 2012

February 1, 2012

We received the rest of the test results and they were all good!  Now,  we wait 3 months for the next bone marrow tests.  

Please continue to pray for him.   



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January 31 2012

January 31, 2012
David here. Grant had his bone marrow aspiration and spinal tap yesterday.  As usual, he handled it like a big boy.  Not one tear(the same can't be said for mommy and daddy).  Dr. Dreyer called last night to tell us that Grant's MRD was 0 which was great news. That means no leukemia cells detected by that test.  This  is the first of 3 bone marrow tests they run.  We should get the other results later in the week.  They also tested his spinal fluid for signs of leukemia and those results shou...
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January 5 2012

January 5, 2012
David here.    Grant completed his last scheduled  in-clinic chemotherapy treatment on Tuesday.  He will continue to take oral chemo for about 4 more weeks.   He will undergo a diagnostic spinal tap and bone marrow biopsy at that point.  After that, he will get his blood checked every 4 weeks(unless we want it done more frequently) and have his bone marrow and spinal fluid checked about every 3 months.   The doctors don't really use the term "cured," but they say  that if he reaches the 5 yea...
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Thursday, Dec. 8, 2011

December 9, 2011

Tonight I asked Grant what he remembered about being in the hospital, and his response kind of surprised me. I have not written before about his room, or his feelings of being in the hospital, so I wanted to record it before I too, hopefully forever, forget. (Hopefully forever, because I hope he never has to be inside the walls of the hospital as a patient again.)

Before I tell you what Grant said about being in the hospital, let me describe the 9th floor and his rooms.


When you enter the ...


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Prayers for a family friend - Dec. 7, 2011

December 7, 2011
Hello all,

This is Melanie. I am asking for everyone who reads this blog to please send up prayers for a dear family friend of ours. I am not putting the family's name on here to protect their privacy.

Today, our friend's new born baby earned her angel wings at the very young age of 6 weeks. My heart is totally broken for the mother, the father, the sweet siblings and their wonderful grandparents. I am blessed that this sweet baby girl was in my arms for a moment and that I had the opportunity ...
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October 21 2011

October 21, 2011
David here.   We're sorry for not updating in so long.  As most of you probably assumed, no news was good news. Grant has been doing well.  He loves his Pre-K 4 class at St. Martha and has made lots of new friends, especially Ian, Clinton, Luke, Jacob and Joshua. 

Sunday is Light the Night Walk in The Woodlands.  Grant is one of the Honored Heroes this year, so he will get to be on stage at the beginning of the walk.   We are very excited about that. 

Grant is following his buddy Albert Pujol...
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August 23, 8:30 a.m.

August 23, 2011
David here.

We received the results from the remaining bone marrow and spinal fluid tests---good news on all of them.   The tests will be repeated in about 11 weeks. 

Grant and Claire are enjoying school.  They love their teachers and seem to be making friends in their classes.

That's about all for now. 



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