the Terrell family

The words of Marti Love’s parents, Anna and Jason Terrell.

“Marti Love is a sweet, red head 12 year old girl who has been battling a craniopharyngioma brain tumor since she was 6 years old. After radiation, chemotherapy, being on growth hormones, fourteen surgeries, living away from home eight out of fifteen months and now being bound to a wheelchair, she has been robbed of her childhood. The treatments and surgeries have left her cortisol dependent. She lacks pituitary function and requires growth hormones too. She has narcolepsy, is at risks of seizures, and is also dealing with a challenging condition, diabetes insipidus.

In October 2013 her tumor hemorrhaged because of a trial chemotherapy drug. This hemorrhage resulted in the loss of her short-term memory seemingly overnight. Later, in February 2014 she endured a major craniotomy to attempt to remove the tumor that was growing and becoming more problematic.  This left her with three months of daily intensive rehabilitation, which she continued weekly upon her return home.

With God’s Grace Marti recovered slowly and steadily.  For a month she was able to feel better but then her tumor started bleeding again.  Unfortunately, sweet Marti required another major craniotomy.  This was a much more invasive and required 10 ½ hours of surgery in October 2014. Doctors also discovered a blood clot and removed more of the tumor that was not attached to her brain stem. She also has a (VP) shunt to prevent hydrocephalus that has been a problem from the beginning.  This VP shunt started malfunctioning as well this year.  After four surgeries in February the doctors discovered the only valve that would allow the shunt to flow correctly was a special zero-pressure valve. To date she hasn’t made a complete recovery to her state prior to this last surgery.

Marti Love is currently in rehabilitation. She is currently working on standing independently with the hopes of walking again.  We think she may have suffered a stroke during the October surgery because despite strength in her right arm and leg, she is unable to control these limbs according to her wishes.  She also had to learn to swallow again. The cranial nerve damage she has suffered has left her left eyeball with a damaged pupil and unable to move, making her vision is very limited. This is improving as prior to her October surgery she was completely blind. We are witnessing improvements in various areas and are thrilled with even the slightest glimpse piece of hope. 

What this beautiful young girl has dealt with, and continues to deal with now and in the future is tragic and devastating. But not once has she complained, whined or argued. She pushes through, works hard and is such a pleasant child. She is the most thoughtful, self-less and kind person we know.  She has always seemed wise beyond her years, an old soul and loves being around people. 

Lately she has good days where she has energy and we enjoy her fun personality.  Then there are some days where she can barely lift her head from fatigue.  We are thankful for God’s grace in this mess.  We know His plan is perfect.  We just received word from her latest MRI that the tumor is stable and half of the size as it was after her surgery.  That is a huge blessing and reason to celebrate God’s great power and love.”

the kucelin family

   Member of the Kucelin Family spending precious time this summer at Camp Sunshine.

 

Member of the Kucelin Family spending precious time this summer at Camp Sunshine.

The Kucelin family know what it means to fight. For a little over a year, their brave daughter Bianka fought a rare brain cancer, blazed her trail as a warrior against cancer and found her peace in our heavens just this July. Her mark will always be felt, her fight will continue to be fought and because she loved butterflies so much, she will likely flutter by as you take a stroll or work in your yard, a reminder that brave spirits are immortalized beautifully.

The type of brain cancer Bianka had is aggressive and rare. Supratentorial Primitive Neuroectodermal tumor, known as SPNET, requires research and resources to support this. Ana, Bianka's mom, has done more than any of us likely would for the cause of childhood cancer. She rallied the community, both local and global, to donate to Bianka's Hero Fund at St. Baldricks. They have reached $20,000 to support SPNET research. In addition to this, the family donated tissue to researchers because there has been a dire lack of this.

All through September this year, Ana has been advocating for Childhood Cancer Month, posting daily updates and information about childhood cancer on the Facebook page 'Bliss and Blessings for Bianka'. Bianka will also be honored at the Atlanta Botanical gardens as a beautiful 'scarecrow' depicting a girl with butterflies. Needless to say, the family have been busy, engaged and a true testament of the capacity in all of us to do good, serve and heal. While their path is heartbreaking, they have been open about their experiences and vocal on causes for childhood cancer because as a united front, we can conquer cancer and be brave.

To learn more about the Kucelins please listen to this WABE StoryCorps account of their experience. While this interview took place while Bianka was still with us, it is an immortal story and one to keep sharing:

http://news.wabe.org/post/storycorps-atlanta-ordeal-will-rip-your-heart-out

   A beautiful sprit who will live on eternally... Bianka Kucelin

 

A beautiful sprit who will live on eternally... Bianka Kucelin

 

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