Leigha's brain surgery #leigharose
Donation protected
This has been a rough year for my family. On November 15, 2018 everyone gone to go to bed, except for my son Jacob because he had some last minute clothes to wash. As Jacob headed off to bed he heard a weird noise coming from Leigha’s room. Walking into his sister’s room he turned the light on and saw her gasping for air and physically convulsing. He yelled for his dad and then called 911. My little girl was having a seizure; it was the worst 3 mins of my life. After the seizure ended she could not talk or move for 15 mins. When the ambulance arrived we took her to Children’s Mercy hospital, where she was referred to a neurologist and scheduled for an MRI. On the 19th of November our lives changed forever! I received a call from Children's Mercy that my 9 year old baby girl had a brain tumor. After seeing several doctors we thought we had a diagnosis and a treatment plan; we didn’t. Not knowing what is wrong with your child is one of the hardest things for any parent.
We found out that she has 5 lesions on her brain; 2 of which were on her temporal lobes. Affecting hearing and selective listening, the temporal lobes receives sensory information such as sounds and speech from the ears. It is also key to being able to comprehend, or understand meaningful speech. There are also two lesions on her Thalamus, which serves several functions: the relaying of sensory signals, motor signals to the cerebral cortex, the regulation of consciousness, sleep, and alertness as well as the perception of touch, pain, and temperature. The final lesion is on the left Parasagittal Parietal lobe, affecting verbal memory and the ability to recall strings of digits.
She started having seizure frequently so she was scheduled for an emergency EEG and then they started her on the seizure medication Keppra. After a few weeks she began to have seizures again, so they increased her dose. This seemed to work for a month or so, but just as we thought we had the seizures controlled she started to have more. She was then started on another seizure medication called Vimpat. It seemed to work well until a month later when she started to have more seizures but this time she began having horrible headaches; preventing her from being able to attend school or even participate in daily functions and activities. This lead us to another EEG and Leigha starting yet another medication called Clobazam. We then received word that the Neurologist would discuss her case to determine what the next steps were for our baby girl.
They called me 2 days later to schedule Leigha to see the neurosurgeon in hopes of removing the tumor that is causing most of the seizures. I feel so helpless as I cannot take this pain or suffering from her. We do know that they can’t get all the tumors, nor do they know what all the other tumors are exactly. They do know that the 2 on the temporal lobes are called DNET or Dysembryoplastic neuroepithelial tumors. The neurologists told us that this is only the beginning for Leigha; and my not stop the seizures.
When you go from thinking you have a healthy little girl to a girl that is sick with little hope of her ever being able to function like other children your life upside down in more ways than 1. The neurosurgery for removing one tumor is scheduled for July 19, 2019. We do not have a date for removing the tumor on the other temporal lobe; the other 3 lesions are inoperable. After the surgery, either myself or my husband will have to take non-paid medical leave to be with our child. Tho my sister will be helping with home-schooling, we have limited family in the area and the loss of one complete income will be devastating to our family, but it has to be done for the health of our little girl. We are not generally the type to ask for handouts, and if it were simply my husband and myself, we would do whatever it took, including living in our van to take care of the other. We cannot do that to our 3 children so we are swallowing our pride and asking for the generosity of strangers to help while our baby gets the help that she needs. We thank you for anything you could offer to include sharing this and your prayers.
We found out that she has 5 lesions on her brain; 2 of which were on her temporal lobes. Affecting hearing and selective listening, the temporal lobes receives sensory information such as sounds and speech from the ears. It is also key to being able to comprehend, or understand meaningful speech. There are also two lesions on her Thalamus, which serves several functions: the relaying of sensory signals, motor signals to the cerebral cortex, the regulation of consciousness, sleep, and alertness as well as the perception of touch, pain, and temperature. The final lesion is on the left Parasagittal Parietal lobe, affecting verbal memory and the ability to recall strings of digits.
She started having seizure frequently so she was scheduled for an emergency EEG and then they started her on the seizure medication Keppra. After a few weeks she began to have seizures again, so they increased her dose. This seemed to work for a month or so, but just as we thought we had the seizures controlled she started to have more. She was then started on another seizure medication called Vimpat. It seemed to work well until a month later when she started to have more seizures but this time she began having horrible headaches; preventing her from being able to attend school or even participate in daily functions and activities. This lead us to another EEG and Leigha starting yet another medication called Clobazam. We then received word that the Neurologist would discuss her case to determine what the next steps were for our baby girl.
They called me 2 days later to schedule Leigha to see the neurosurgeon in hopes of removing the tumor that is causing most of the seizures. I feel so helpless as I cannot take this pain or suffering from her. We do know that they can’t get all the tumors, nor do they know what all the other tumors are exactly. They do know that the 2 on the temporal lobes are called DNET or Dysembryoplastic neuroepithelial tumors. The neurologists told us that this is only the beginning for Leigha; and my not stop the seizures.
When you go from thinking you have a healthy little girl to a girl that is sick with little hope of her ever being able to function like other children your life upside down in more ways than 1. The neurosurgery for removing one tumor is scheduled for July 19, 2019. We do not have a date for removing the tumor on the other temporal lobe; the other 3 lesions are inoperable. After the surgery, either myself or my husband will have to take non-paid medical leave to be with our child. Tho my sister will be helping with home-schooling, we have limited family in the area and the loss of one complete income will be devastating to our family, but it has to be done for the health of our little girl. We are not generally the type to ask for handouts, and if it were simply my husband and myself, we would do whatever it took, including living in our van to take care of the other. We cannot do that to our 3 children so we are swallowing our pride and asking for the generosity of strangers to help while our baby gets the help that she needs. We thank you for anything you could offer to include sharing this and your prayers.
Organizer and beneficiary
Heather Roots
Organizer
Warrensburg, MO
Holly Belanger
Beneficiary