**This is the story of Ava Grace, my beautiful niece who was diagnosed with retinoblastoma at 2 mos. Funds raised through this campaign will be used for medical expenses not covered by insurance and expenses procured when traveling to the Children's Hospital of Philadelphia for treatment. Any funds not used for these expenses will be donated to a charity that benefits pediatric cancer patients and their families.**
**This is Ava's facebook page that my sister made! It has more photos and updates about her treatment! Feel free to check it out and like her page!
On Oct 24 2013,the lives of Josh and Crystal Richard were changed forever when the beautiful Ava Grace was born. With a head full of hair and calm presence she made her way into their hearts. At Ava's 2 month checkup, mom and dad and the pediatrician noticed some rapid eye movements that accompanied Ava's cross eye (a supposed normal newborn finding). They also noticed Ava mostly looked at lights and did not focus on people. At that time they were referred to a pediatric opthamologist in charlottesville for further evaluation. Mom was worried sick and eventually called to move up Ava's appointment by one week. On Friday Jan 3rd, 2014, their lives changed again,but in a way they could never have imagined. After a rather brief eye exam, the doctor sat Josh and Crystal down and delivered a diagnosis- retinoblastoma- a rare malignant form of pediatric eye cancer. CANCER. Ava had multiple tumors in both eyes that he could see with a minimally invasive exam. Devastation consumed mommy and daddy with the thought of possibly losing their sweet child. Dr Carter quickly recommended that Ava be sent to the infamous Dr Shields at Wills Eye in Philadelphia, PA for an appointment first thing Monday. He told them that he felt as though there was reason for hope for Ava- for her life and her vision- with new advancements in RB treatment. And off they went.
Since then life has been a whirlwind of doctors appointments and procedures while trying to mix in some normalcy. First stop was Wills Eye where Dr
Shields performed a thorough awake eye exam in her office. This involved holding Ava down and prying her eyes open with metal clamps to get the best possible assessment. This was the worst part for them to watch.
Ava's doctor confirmed her diagnosis of RB, gave her recommendations, and sent the family to the Children's Hospital of Philadelphia (CHOP). She had a MRI at the beginning of treatment to make sure no cancer had spread to her brain...thankfully none had. Ava then started 6 cycles of chemotherapy, one each month, 2 day cycles each time, 3 drugs one day and one repeated the next day. This regimen was mixed with a cocktail of anti-nausea drugs and fluids through an IV. In Charlottesville, Ava got weekly lab draws at UVA and, at home, she got several medications. Some were for pain and nausea and constipation and there was twice weekly antibiotic to prevent a pneumonia that is common in immune compromised people. By the time Ava had completed her second cycle of chemotherapy, mom and dad began to notice some changes in Ava’s interactions that suggested improved vision. It was confirmed by eye exam that the tumors were beginning to shrink and move out of her central vision. The three traveled to Philadelphia for monthly eye exams and then a round of chemo through what seemed to be every winter storm the east coast was impacted by. .
At age 6 months, Ava had her first surgery and first time under anesthesia for her EUA (exam under anesthesia). This replaced her in office exam and took place monthly. Ava already had new tumors growing in both eyes despite being on chemotherapy. They treated old and new tumors with lasering and freezing therapies. She finished chemotherapy at the end of May and continued every month with surgical treatments of her eye tumors. Luckily through this time Ava didn't get sick, not even a cold, which could have been life threatening to her weak immune system. At the end of the July exam when Josh and Crystal feared the worst, Dr Shields decided they could wait 2 months before the next return to Philly. It appeared as though Ava had responded well to the treatments during the last 2 appointments and following the systemic chemo. Ava, mommy, and daddy enjoyed 2 months of no traveling, no medicines, and more "normal" activities like play dates and swim class. However, when Ava had her September EUA, bad news was delivered. Both eyes had regrowth of tumors and she would need a new type of treatment. This would involve a new high dose chemo being delivered through the artery that supplies blood to the right eye(IAC). This would be done at a new hospital by a neurosurgeon- one of very few in the country doing this procedure. Ava would also have chemo injected with a needle directly into her left eye and possibly IAC to her left eye eventually. The hope of her team is to preserve as much vision as possible and save her eyes from removal without risking cancer spreading throughout her body. These doctors are amazing and have so much to take into consideration.
Overall, Ava is a thriving 11month old. She seems to have reasonably good vision that helps her get around, feed herself, and interact with others. She is around the 97th percentile for both height and weight- chemo
didn't slow down her growth! And most importantly, she is happy and brightens up even the worst of days. She is brave beyond her years and such an amazing little fighter.
**During the travels the family has gotten assistance with lodging from the Philadelphia Ronald McDonald House where they provide lodging for an extremely discounted price and food is donated. Josh and Crystal feel very fortunate to have been able to use the assistance of the PRMH because there are so many families that are in need and get referred to CHOP for illnesses more life threatening and stays more lengthy. The PRMH has also been very understanding when it comes to scheduling because we do not know the outcome of the exams until they take place and what may be required for the subsequent days and possibly weeks following. Even when the "house" is full they have been able to work out more affordable rates at some of the local hotels so the family doesn't have to travel from outside the city for doctors appointments that often require arrival at 6:15 am. This service has allowed the traveling from hours away to be manageable and almost tolerable for the Richard family and many others that Josh and Crystal have encountered at the PRMH.
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- Kait Nevel
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