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Reagan Leigh Bingham

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On September 14th, 2020 my brother Jeremy, sister in law Ashley , and two nieces Bradleigh and Reagan world was turned upside down. Jeremy and Ashley were preparing and beyond excited to be welcoming their second beautiful daughter. An ultrasound was scheduled due to Ashley measuring a bit more than expected, a simple fluid check. The ultrasound tech did the ultrasound and had the provider come in to look as well. Ashley fluid was normal but what they found was more astonishing and horrifying then anyone could have imagined. Reagan Leigh Bingham was found to have a mass of some kind in her brain. Maine General unsure of what it was immediately referred them to Portland. The same day they went to Portland and as Ashley sat alone in the office terrified they yet again confirmed there was a mass on baby Reagan’s brain and they were unsure of her prognosis. They too were unsure of what it was, possible tumor or maybe a hemorrhage. Jeremy and Ashley went home for about a week. They were told to bring their bags for admission at every appointment. A week later on their first daughters 4th birthday they prepared for the appointment. They spent the morning with Bradleigh and sang her Happy Birthday before she went to daycare. They made the trip to Portland after dropping her off not knowing whether they would be returning home to their birthday girl that night or would be at Maine Medical Center admitted to have their baby. The ultrasound that day showed changes in the babies brain which led to a direct admission for an early morning cesarean section the next day. On September 24, 2020 Reagan Leigh Bingham was born, unsure of how she would do she defied all odds and came into this world as perfect as can be, her parents said one would have never known there was a mass or something invading her brain. After birth Reagan was quickly taken for a MRI which showed a mass and lead to the choice by Maine Med to transfer her care to Boston Children’s Hospital the next day. Her case was taken on by the director of neurosurgical oncology at Boston’s children. She developed a plan to resect Reagan’s tumor. On Reagan’s first night in Boston she underwent a needle biopsy and it was determined that she did in fact have a tumor, one so rare Boston Children’s has not seen it in 20-30 years. Reagan’s tumor is a high grade infantile glioma with ALK gene mutation that was the size of her entire right side of her brain. A tumor that they can’t even say why it happened, termed as a fluke. One week into being at Boston children’s on October 5th Reagan underwent a 8-10 hour craniotomy with tumor resection. During surgery Reagan required several blood transfusions yet remained stable through the entire thing. Following surgery she remained intubated and her post operative MRI unfortunately showed clotting in Reagan’s brain that would require her to be on a heparin drip, a drip that the surgeon didn’t want to even consider until two weeks post op as the risk of bleeding was very high. A decision however, at 48 hours was made that Reagan needed heparin. For two weeks after surgery Jeremy and Ashley weren’t able to hold her. Jeremy and Ashley had to make the tough decision for him to return home to be with their oldest daughter Bradleigh. Jeremy and Bradleigh go and visit on the weekend ax 6 days ago Reagan was extubated and has been breathing on her own since. Her medications including the heparin as of today have been discontinued. She still requires a feeding tube but Ashley has been able to hold and breastfeed her beautiful girl. Reagan and her parents have shown strength beyond measure. Today Reagan is doing very well but the road ahead is long for her, her parents, and her sister. It is unknown when Reagan will be discharged and able to come home with her family. Although Reagan’s tumor was removed it has been determined that due to the type and grade she will require chemotherapy. Once home she will go to chemotherapy twice a week for six months either in Bangor or Portland. She will also need physical therapy to strengthen any deficits that she may have due to the severe damage to her brain. She will require full time care from her parents which of course would be trying and difficult on any family. Please show your support for this incredible family and special little girl, by donating or sharing this. Prayers are always welcome and we believe God has had his hand on this family from day one.  Reagan’s road to recovery has begun but will be a long one.
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Donations 

  • Anonymous
    • $40
    • 4 yrs
  • Kathilee Bolduc
    • $100
    • 4 yrs
  • Anonymous
    • $100
    • 4 yrs
  • Anonymous
    • $30
    • 4 yrs
  • Drew Blanchet
    • $50
    • 4 yrs
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Organizer and beneficiary

Katrina Roberts
Organizer
Oakland, ME
Jeremy Bingham
Beneficiary

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