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Krista Lindley's Fundraiser:

In Memory of Brennan: Help Cure AT/RT

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BENEFITING: CURE ATRT NOW INC

Krista Lindley

THE STORY:

Brennan was born August 7, 2013 at 3:58 AM. He is the younger twin to brother Connor. He also has a big sis Paige, who loves him dearly. After 12 days in the NICU, I was able to bring my bundles of joy home. I quickly was able to tell the differences in the boys. Although twins, they had distinct personalities and physical characteristics. Brennan is the "easy" twin, with the sweetest personality and calm demeanor. He's gentle and happy.. and very strong. He has the cutest little coy smile that can melt any heart. I especially love the dimple on his left eyebrow that you can only really see when he puts  on his "serious face". He is a precious little boy.

Brennan was diagnosed with AT/RT (atypical teratoid rhabdoid tumor) on 11/14/13. We initially brought him in for a check up because he was developing slower than Connor. There were some other signs we picked up on too, like a full fontanelle, jerky movements and unfocused eyes. An ultrasound diagnosed him with hydrocephaly and the doctors expected to place a shunt for drainage. I was so scared. But things got even worse.

The MRI was scheduled the next day. My family and I were sitting anxiously in the waiting room when a group of doctors asked to see us in their office. A 3.5 cm tumor was discovered in his cerebellum. Brain surgery followed shortly after, and 100% of the tumor was removed! He healed up like a champ. I almost had a sigh of relief. From my research, most tumors are benign, and others have a good prognosis. But when pathology results came back, we were hit hard with the awful news - It's malignant and aggressive. My heart was broken. It still is. But I keep remembering that 100% of the mass was removed. That's a big deal. Many survivors of AT/RT did not have those results. He is going to be one of the lucky ones.

We've been through two rounds of chemo and it's already been rough. He's already had to deal with fever and illness, severe diaper rash, mouth sores, and enteral feedings. This will be a 12-14 month chemo plan, with evaluations (MRIs/lumbar samples) every 6 weeks to determine if the treatment is working. The first is scheduled for mid- January 2014. I am hopeful we eventually will bring our baby boy home with us, to live a long, healthy and happy life.  Thank you for reading our story. I will keep you all posted on his progress....

 

~~Brennan's journey came to an end on the night of January 23, 2014. Heartbroken to say goodbye... He fought hard, my little soldier. But it was time to let go. He left us peacefully, in my arms. I miss your sweet smile, precious boy. You are loved and will be remembered always.

 

~~I created this page to join the fight against AT/RT in Brennan's memory. Donations go to "Cure AT/RT Now", a non-profit organization, where 99.8% of all donations go to medical research at the Dana Farber Institue for a cure to ATRT.


About AT/RT (from cureatrt.org):


"Atypical teratoid rhabdoid tumor (AT/RT) is a rare and deadly tumor diagnosed in childhood. AT/RT most commonly presents as a brain tumor, but can occur elsewhere in the central nervous system including the spinal cord. Only about 30 new cases of AT/RT are diagnosed in the US each year.

 

 

AT/RT is highly malignant and thus has a high mortality rate. The age of the child at diagnosis has a significant correlation to survival rates. Children over three have seen survival rates in the 70-80% range. Unfortunately, for children under three, that rate falls to 10%. Because most children diagnosed with AT/RT are under three, the overall survival rate has historically been very low.

 


There currently is no known cure for AT/RT. However, there has been dramatic improvements in treatments recently and there is increased optimism that these new treatments will soon lead to significantly higher survival rates."

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