Mile #238 in honor of Avery

Total: $214

(7 Funders)

Story

Avery Heino was a sweet, silly and overall easy going toddler when she was diagnosed with a rare brain tumor - Atypical Teratoid Rhabdoid Tumor (AT/RT) - on June 28, 2014. By the time her tumor was found - after a very long month of illness and her dad, Mike, and I fighting with multiple drs and facilities that she was actually much sicker than they thought - the tumor was almost the size of a lemon. It had also metastasized to her lower spine. Her Drs estimated that the tumor itself had only just started forming around 6 weeks earlier. On her second birthday, July 1, 2014, Avery underwent a 16.5 hr surgery to try to remove the tumor in her brain. Due to the complex nature of these types of tumors, they were only able to remove about a third of it. The tumor was pressing on multiple vital nerves including those that controlled breathing & swallowing, facial
nerves, and nerves that controlled her right arm. Due to where the tumor was located Avery required a tracheostomy to help with breathing and airway control and a G-Tube for feeding since having airway issues meant she couldn’t eat.

Over the next 10 months, Avery would have a total of 13 surgeries – 8 of which were brain surgeries. She would have over 20 rounds of intense, high dose chemotherapy treatments on an almost every other week basis, a stem cell transplant (which is very similar to a bone marrow transplant) and she was supposed to end with 6 weeks of radiation for 5 days a week. Chemo kills your blood counts, including your white blood cells that fight off infections, so after every round of chemo Avery would inevitably get at least one, usually more, infections. This meant we spent virtually all of the 10 months of Avery’s treatment inpatient at Fairfax Hospital.

During the course of her illness, she had to relearn how to hold her head up, use her arms and hands, sit up and walk. She endured many horrible side effects from her treatments …if you name it, Avery had it. But Avery was brave. Oh my gosh, was she brave. She was smiley and happy and silly. She thought her dad was the best and funniest guy she ever met. She adored her big sister Ella. Her favorite place to be was snuggling in her momma's arms. She never got to meet her little sister Eva or her little brother Oliver. She was never able to speak again once she got her trach but she quickly learned how to express herself, communicate and make sure she got her point across. She stole the hearts of all the Drs, nurses, staff and friends with her sweet smile and sassy attitude.

Avery passed away on April 7, 2015. She was only 2.5 years old. She had extremely high doses of chemo on March 7th and her stem cell transplant on March 24th. By the time she got to this point in her treatment protocol, the tumor in her brain was almost nonexistent and the tumor in her spine was gone. This was the final step in ensuring there weren’t any more live tumor cells left in her body that could cause the tumor to grow back before she started radiation. After the stem cell transplant, she declined fairly quickly. Her lungs started retaining fluid and failing, and she developed Acute Respiratory Distress Syndrome, as well as pneumonia and a number of other infections that her body couldn’t handle due to her low blood counts from the chemo. She was moved to life support after her oxygen levels dropped significantly for an extended period of time. It was unknown if she would wake up or what her qualify of life would be like if she ever did.

Please understand - Avery didn’t die because she had cancer or because she didn’t fight hard enough. Avery died because the chemotherapy treatments she had to endure were so harsh. The toxic chemicals being pumped into her body were at one point secreted through her skin –forcing everyone who touched her to wear gloves and long sleeves. She endured more in her 2.5 years that any one person ever should – particularly a child. Our system failed her. So much was stolen from us – not just our precious baby’s life…but her future, our future. First days of school – Avery should be 7 years old and in 2nd grade, family vacations, playing and growing up with her sisters and brother, teaching her to drive, graduations, her wedding, our grandchildren. All of that is gone now.

Although Avery's illness was unrelenting, she possessed strength, perseverance, and an ability to overcome incredible odds and physical challenges - always with a smile on her face. Her courage inspired others to begin new spiritual journeys, grow together and realize what matters most in life. Her parents and siblings will continue on in Avery's name to help advocate, support and fight against pediatric cancers.

To read more about her story and help spread awareness, please read this photo essay done about Avery - http://brittanigattisphotography.com/the-day-in-the-life-of-pediatric-cancer/

Thank you, Tom. We love you xo


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