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Very cool story of a CML survivor paying it forward

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#1 CallMeLucky


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Posted 01 February 2012 - 11:44 AM


Dreams still come true  

Cancer survivor gives back to sick child through organization

February 01, 2012

Squeals of laughter and the pitter-patter of little feet filled the family room at the home of Jeneé and Jim Bourgeois one recent evening.

Their three children — 5-year-old Jackson, 3-year-old Anna James and almost 2-year-old Sloane — were all atwitter at the news the group of visitors had just shared. The family is going to Walt Disney World.

The trip, which is planned for Thanksgiving, is being made possible by Dreams Come True Inc. Founded 20 years ago, the organization provides dreams to Louisiana children with life-threatening illnesses.

Anna James has acute lymphocytic leukemia (ALL), which affects approximately 60 percent of children with leukemia, a form of cancer that affects blood-forming tissue and occurs when white blood cells replicate uncontrollably. This particular form of childhood leukemia most commonly occurs in children ages 2 to 8, with a peak incidence at age 4.

Anna James was only 15 months old when diagnosed. As Jim Bourgeois explained to their guests, Jeneé was pregnant with Sloane when all of a sudden Anna James became clingy, irritable and "lazy." She had been walking but stopped, refusing all temptations offered by parents and grandparents.

"We just figured she was acting out because of the new baby coming," Jim Bourgeois shared with the visitors from Dreams Come True.

When Sloane was born, things got worse and additional symptoms presented, so nine days after giving birth to their third child, the Bourgeoises took Anna James to the doctor and received news no parent ever wants to hear: "Your child has cancer."

Like so many parents before them, the Bourgeois family immediately flew to Memphis, Tenn., for treatment at St. Jude Children's Research Hospital. For eight straight weeks, Jeneé, Anna James and new baby sister Sloane lived at St. Jude's. Grandmothers Vivian Bossier and Gail Bourgeois alternated going to stay with them because Jeneé was recovering from a C-section. She wasn't supposed to walk for two weeks much less hold Anna James. But that's rather hard to explain to a 15-month-old who is being poked and prodded by strangers, so Jeneé would sit in a wheelchair and ride around the hospital with her daughter on her lap.

Jim Bourgeois had just started a new job, so he would work Monday through Wednesday and on Thursday drive to Memphis with then 3-year-old Jackson.

"Most times I'd stay with Anna James in the hospital to give Jeneé a break, and on Sunday we'd head back home," he added.

Dreams Come True grants about 50 to 60 dreams a year, so the fact that Anna James is a recipient isn't remarkable. The fact that her dream is being funded by an adult who was once a Dream Child himself puts a different spin on things.

Jason Guerin, 36, and wife Danielle went with Dreams Come True Executive Director Becky Prejean to meet the Bourgeois family and make plans for the trip to Disney World. The meeting seemed more like a reunion as Guerin and the Bourgeoises shared their stories.

Guerin was in fourth grade when he was diagnosed with chronic myelogenous leukemia (CML), a slowly progressing disease in which the bone marrow makes too many white blood cells. While this type of leukemia is more common in adults, it can affect children.

His mother took him to a pediatrician after he came home from school complaining of his leg hurting. The Guerins thought they probably were dealing with a pulled muscle, but their world was turned upside down when the routine blood work ordered by the doctor came back with a diagnosis of CML.

"I remember everything about it," Guerin said. "We went straight from the pediatrician's office to the airport and headed to St. Jude. My mom was visibly upset. I thought they were going to cut off my leg because that's what hurt."

Because CML can't be treated with radiation or chemotherapy, the St. Jude doctors worked to stabilize Guerin until a bone marrow donor could be found. No one in his family was a match, so he was placed on a donor registry.

Back home and thinking it was probably their son's last summer, Susan and Tom Guerin worked with Dreams Come True to get him the four-wheeler he wanted, and his grandparents took everyone to Disney World.

"I'm like, wow my life just got a whole lot better; this is awesome," said Guerin, who returned to St. Jude once a month for checkups and treatment.

One of those treatments was Interferon. He was one of the first children to be treated with the new drug and initially it worked. But then the leukemia came back and the wait for a donor continued.

During his senior year of high school, Guerin got a call from his St. Jude doctor. A bone marrow donor had been found; he needed to head to Memphis immediately.

"I was like no way," Guerin said. "It's my senior year. I've got a date for homecoming. I felt great, and I didn't want to go."

CML is classified by phase: chronic, accelerated or blastic. When the doctor told Guerin that his last tests showed he was in the blastic phase, he dropped out of school and headed to St. Jude for the transplant.

"Typically there's a 30 percent chance of success, but I was in good health otherwise, so they thought maybe I had a 40 percent chance ... and it worked," said Guerin, who also shared tales of his post-op teenager tirades with the group.

"It's a different experience when you're dealing with a teenager," Jim Bourgeois said. "Anna James has no comprehension of what this is all about. Not being able to communicate what hurts for us has been the hardest part."

"Her leg probably hurt like mine, which is why she didn't want to walk," Guerin said. "Even when she's sick from the chemo, she can't tell you."

Because Guerin's transplant was done at a research hospital, he has to go back every 10 years for a checkup. Anna James now goes to St. Jude every six to eight weeks.

"ALL in children under 12 months is usually fatal because they (the doctors) can't get their immune systems up enough for chemo," Jim Bourgeois said. "Her being 15 months old put her in that next tier."

"And, having a St. Jude Affiliate Clinic here in Baton Rouge has been huge," Jeneé Bourgeois said.

Tales of St. Jude eventually evolved back to Dreams Come True. Guerin's wife discovered that the group had gifted him with the four-wheeler.

"We have a successful business and wanted to give back," he said. "Danielle pushed me to find Dreams Come True."

When Danielle got in touch with the organization, Prejean knew immediately which Dream Child she wanted to match them with.

And, after talking with Prejean, hearing about Anna James and getting a photo of her, Danielle emailed Jason the photo with the message, "We're going to see Mickey!"

Well, yes, they'll see Mickey but Anna James looks forward to meeting the Disney princesses, especially Ariel, the "Little Mermaid" who, as Anna James informed everyone, "lives in a castle."

Hours of watching "Mickey's Clubhouse" and other Disney movies and shows as she undergoes chemo has left Anna James knowledgeable about all things Disney.

"They're so excited about this trip," said Jeneé Bourgeois. "When Jackson was 2 and I was pregnant with Anna James, we went to Disney World with Jim's dad's business. People told me Jackson probably wouldn't remember the trip, but he was so excited when he saw those characters. When I think about the girls getting to experience that ... I can't wait."

In the meantime, the Bourgeoises plan to have the Guerins over for dinner to meet the rest of the family. There's even talk of the Guerins baby-sitting and giving this couple a much-needed date night.

"We definitely want to keep in touch," said Guerin as he and Danielle said their goodbyes.

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#2 pammartin


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Posted 01 February 2012 - 05:56 PM

Thanks Lucky, very nice read.

#3 Happycat


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Posted 01 February 2012 - 08:49 PM

Made me cry!  My, but how I hate cancer. I hope that child makes it. I'm glad she has that opportunity to visit Disney and meet the princesses.


#4 janne



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Posted 01 February 2012 - 09:56 PM

Thank you for sharing this Lucky.


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.


CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 

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