Over the years, Casey Cares has had the privilege of touching the lives of thousands of critically ill kids thanks to your support. That includes children who have now graduated to the title of "alumni patient" of our programs. While some leave our programs when they turn 18, others depart when they no longer meet the criteria of being diagnosed with a critical illness, experiencing frequent hospitalizations, receiving active treatment, or being on hospice care. Each alumni patient's journey is a testament to their resilience, the support they have received, and the lasting impact that Casey Cares has had on their lives. Read "Little Moments, Lasting Stories" alumni feature with Augie!
Meet Augustine, aka Augie!
"Since birth, Augie has been a joy to our family," shares his mother Katie.
"We have 3 girls and though I always wanted 4 kids we were not sure that we would be able to have any more children; however, 7 years later, a beautiful little boy was born. There were special aspects of Augie's personality that were clear from the beginning. He has always wanted to be close to his family. Somehow he always knew when he was missing out on all of us hanging out together and he longed to be in whatever room his sisters were in, even as a newborn. Knowing now how little he was able to see prior to 6 months of age, I wonder if it was the voices and cuddles he longed to be near. He also has an innate ability to bring a smile to anyone's face. He stands out to any and all strangers, possibly because he has been wearing bright blue glasses since he was 9 months old but I think also because he has such a pure soul and loving and joyful personality," she says.
The family later learned about Augie's diagnosis of bilateral retinoblastoma when he was 5 months old.
Katie states, "At 2 months of age, I had some concerns that Augie tended to turn his head to look more to the left than to the right and that he wasn't seeing us clearly. He would give us this huge smile when we held him up close to our faces, but would not react to our facial expressions from a few feet away. The pediatrician felt like he was still young and many of these observations could be his eyes still developing, but they would check vision at 6 months of age."
She continues, "When he was 5 months old, he woke up with slight nystagmus (eyes shaking), and I took him the next day to see an ophthalmologist since he had a cancellation --which was one of many miracles! Dr. Doerr dilated Augie's eyes, examined inside, and could tell right away what it was. He told me that there were growths in both eyes, larger in the right eye and he would need to be seen urgently either in Durham (2.5 hours away) or in Philadelphia (5+ hours away). I was by myself for the appointment with Augie that morning and the doctor gave me the exam room for the rest of the day while he hurried to make phone calls. He made sure that I did not leave the office until he had a plan for us."
Katie recalls, "At this point, I had not even had a chance to call my husband or anyone else. I was in shock. I went home, put Augie down for a nap and called my husband, Bert. I made sure that he was in a place where he could talk because I told him the news "was not good." He happened to be up on a ladder at the time, so it was fortunate that I warned him. We swept into action. Bert and I drove down to Duke Eye Center in Durham (the closest of the 2 specialty centers) that evening and the very next day it was confirmed that he had retinoblastoma. They also did genetic testing and confirmed that he had a spontaneous mutation of the RB1 gene, meaning that this would be harder to treat and he would be at risk for other cancers as well."
From there, the first few days were a flurry of confusion and panic for Augie's family.
"At a moment's notice we had to leave our other 3 children at home with my parents and had no knowledge of what would happen, how long we would be gone, how much it would cost, and what his prognosis would be. We signed pages of consent forms for dangerous procedures because we had no other choice or no time to investigate other options. After 3 rounds of intra-arterial chemotherapy by Dr. Hauck and Dr. Landi and laser treatment over 3 months at Duke with Dr. Materin, the options were running out and enucleation (removing the eye(s)) or radioactive plaque were the next plans on the table, particularly because the tumors in the right eye were not getting small enough to see if the optic nerve was clear. The optic nerve is the highway to the brain, and if cancer leaves the eye it is a much more devastating prognosis," Katie says.
While it was hard for Katie to "leave the wonderful team that saved Augie's life initially, but without a clear path forward in treatment we decided to transfer to Children's Hospital of Philadelphia under the care of Dr. Leahey and Dr. Shields at Wills Eye Hospital, where there might be more options we hadn't considered. They determined that the tumors were holding stable but that Augie should complete 6 rounds of chemotherapy over 6 months to make sure that any cancer that escaped the eye would be stopped in its tracks. Augie ended treatment in February 2023 in Philadelphia at 14 months of age."
Life After Treatment
"Now that we are finished with active treatment, life teeters on a spectrum of cautious optimism. In many ways, Augie is a normal 2.5 year old. We like to say that his eyes were born when he was 5 months old. Augie cherishes every new experience and we long to give him as many of those experiences as we can. I remember just before we transferred to CHOP and I had no idea what would be waiting for us there, it was very important to me that Augie visit an aquarium. I wanted him to see while he still had eyes, something that would be very difficult to fully experience otherwise. And even though he was only 8 months old at the time, I needed this as much for myself. I needed to see my baby see his first aquarium. It was amazing to watch him follow the fish with his head and eyes pressed right up to the glass, and we didn't want to ever leave that moment in time. Augie seems to see relatively well these days, though he has had to adapt to losing the center of vision in his left eye and he is often fearful walking down stairs. He patches the right eye 2 hours per day to continue to teach his brain to compensate and also to make sure the left eye remains strong --as the right eye is still the one most at risk for being lost on account of having the larger tumors near or possibly touching the optic nerve.
Though the end of treatment is still only the beginning of Augie's cancer journey, it still has felt surprisingly isolating for Katie.
"We continue to travel with him from Richmond VA to Philadelphia every few months to have MRIs that check for brain metastasis, then EUAs (eye exams under anesthesia) to check for new eye tumors. Augie has been under anesthesia 17 times, and under sedation 10 times, and this will continue throughout his childhood," Katie shares.
She adds, "Augie was in chemotherapy of some kind from 5 months to 14 months of age. Having been a mom of 3 prior to him, and also being a pediatric physical therapist, I knew what would be lost in that timeframe. Platelets being low meant having to be incredibly cautious with a child learning to crawl and walk because falling and hitting his head --a normal part of being a toddler-- would be an emergency situation. Any parent of a child with cancer can tell you that you become glued to the lab results constantly because they completely dictated what you would be able to do on a day to day basis."
Katie remembers, "one day we drove straight home from Philadelphia in October after one of Augie's treatments and I just couldn't take the idea that in a few days his numbers would drop and we would have to isolate from everyone and essentially bubble wrap him again, and we would miss yet another piece of childhood that I cherished so deeply when my girls were that age. Even after a long tiresome drive home from Philadelphia, I drove straight to pick them up from school and we went out to a pumpkin patch --the legit kind way out in the country with a corn maze and tractor ride and everything. Augie was so tired and weak but he still had this deliriously cute little smile on his face. We just really needed that on so many levels.
"I referred to times like that as "slices of normal." Even now, the slices are bigger, but inevitably we are thrown right back into the cancer world when the scans come up every few months," the mother of four states.
Support from Casey Cares
Katie learned about Casey Cares through "a top-notch social worker at CHOP named Susan Pultman, who got us in touch once we got established in Philadelphia."
Thanks to activities provided by Casey Cares over the course of three years, Katie shares that her son loved visiting the Dinos Alive exhibit, as he is super into dinosaurs and The Magic Yarn Superman hat that he received is also still a staple in the family's hospital bag.
"But I would have to say that our favorite activities have been the family movie/pajama/pizza nights. They were somehow always timed right around when we would be getting ready to travel to Philadelphia for the next cancer scans. It is so painful every time to leave half of our family at home for a week and face the possibility of not knowing when we would be back or if we would have potentially devastating news --it brings me right back to how it felt to first hear his diagnosis alone in an exam room. But having those planned family fun nights reminds us that love will get us through any challenge that lies ahead. I think that is a tradition we may continue on our own even now that Augie has graduated from the program, as we have another trip coming up in a few weeks. We will also continue to campaign for our community to be involved in that program," she says.
Reflecting on her family's time with Casey Cares, Katie states that, "when you become a childhood cancer family, you join a club no one wants to be in. But the silver lining is that you become aware of this beautiful, self-less community that includes organizations like Casey Cares who have been there all along doing great things and making this world a better place. There are many causes that people in our country disagree about, but childhood cancer is one cause that brings all people together. I guess my favorite part about Casey Cares is simply that it exists!"
All For Augie
Augie is incredibly close to his sisters!
"Already being the youngest, and a boy 7 years younger than the youngest sister, his feet rarely touch the ground and his outfits are always chosen for him. I estimate he will be about 30 before he is given the chance to make a decision for himself. But beyond that, they are this beautiful, warm cloud of support for him. They make life as normal as possible. They share in the joy of all of his new experiences. When he slipped and bumped his cheek the other day, I went to check on him and all I saw were 3 girls huddled around giving him one large all-encompassing embrace. He was somewhere safe inside that sweet little cocoon of love and affection. It is really beautiful to see," she tells.
The people who care for Augie, whether it's through hugs or through medical care, make up a large network.
Katie states, "I like to say that while it takes a village to raise a child, for a child with cancer it takes many villages. Since all of Augie's treatment and follow-up is provided out of state, we have support networks both at home in Richmond and in Philadelphia. And we will never forget our team at Duke as well. When you become a "cancer family", all of a sudden your world becomes very small. Then you begin to meet your village, experts in the field, support staff/professionals, other families with your child's diagnosis, and cancer organizations like Casey Cares. Then your world becomes a little bigger day by day and it feels a lot more livable."
An Alumni
With Augie now an alumni of Casey Cares, Katie finds that "being an alumni is bittersweet. To be eligible for Casey Cares essentially means you are going through one of the worst times in your life. So to graduate from the program means that you are through the hardest part. But since Augie isn't considered cancer free, and struggles with the consequences of what the cancer has done to his development, it still feels like a very recent memory. He is in this odd reality of being off treatment but still in danger. I am grateful that Casey Cares continues to provide great services to so many new families in need!"
While Augie's chemo is over, his medical care and vulnerability to different sicknesses are not.
Katie says, "We still travel to Philadelphia every few months for MRIs and EUAs. Eventually, the MRIs will stop if all continues to be well and the eye exams will be done while awake when he is about 6 years old and able to tolerate it. His genetic mutation means that even after the eyes have stopped growing, there are other cancers to watch out for, especially bone and skin cancers. So every mole and ache and pain is going to be taken a lot more seriously than with our other kids. He also has to avoid minimize radiation exposure --which is harder than you might think. Like so many kids, Augie has been left with medical trauma that will be a continuous struggle throughout his life. He was pinned down every week for blood draws and IVs for over 9 months, continues to get IVs placed for MRIs (and he's a difficult stick so usually gets multiple pokes) and every eye exam comes with eye drops that hinder his sight even more followed by being taken away from us over and over again to go into an OR."
She adds, "But I like to think that I am a different parent now than I was when he was first diagnosed. I have my own trauma from the experience but I have also seen how brave and strong I can be and how important it is to trust my faith in God and in the people He puts in our path. And I have learned now how and when to ask for help. This all gives me some comfort in the journey ahead."
Katie ends with adivce to other Casey Cares families who also have a medically complex child. "Accept help, especially with the little things. If someone asks if you would like a movie night for your family, it may seem like such a little insignificant thing in the grand scheme of all you have on your mind --but that is so not the case. It may just be the lifeline you and/or your kids needed at your lowest point. Sometimes our kids have the simplest needs that we take for granted. And a new pair of pajamas with built-in cuddle time with family may be just what they needed to push that terrible feeling or worry away from their minds for a little while," she states.
Your support helped bring dozens of fun activities for Augie when he was a patient in our programs! Help more kids like him here!