"Ronald McDonald House New York definitely changed our course of treatment… and everything. Without them, it would have been a very different story for Andrew."
---Andrew’s Mom, Casey
Meet Casey
Back in High School…
When Casey was a freshman, she received an assignment to write about her favorite charity. Casey had always dropped her change into the buckets at McDonald’s and had heard about Ronald McDonald House growing up, but as a freshman in high school, Casey chose to use the familiar organization as the subject of her paper. However, Casey had no idea at that time just how familiar she would become with the House in the future.
Casey and Her Boys
Casey had just turned 23 years old when she welcomed her first son, Andrew, into the world. Casey was working and still works in a full time supervisory position for Starbuck’s. She lives with her boyfriend, David in upstate New York near Albany.
Casey and David’s first son, Andrew, was a great kid. At 19 months, he was diagnosed with autism spectrum disorder and by the age of five Andrew added stage four, high-risk Neuroblastoma to the list.
Neuroblastoma Defined
Neuroblastoma is a rare cancer and only affects about 700 children a year. It often develops in the adrenal glands, which sit above the kidneys, as they contain some sympathetic nervous system cells.
Neuroblastoma is the cancer most often found in infants. It usually begins in the midsection and spreads fast. Researchers still have no idea the origin of this form of cancer, but Memorial Sloan Kettering (MSK Kids) can pretty much eradicate neuroblastoma out of the body when caught early. If you have neuroblastoma, you want to seek treatment at MSK Kids and Casey knew that.
Sadly, for Andrew, in stage four, the cancer had spread through quite a bit of his little body already.
Andrew’s Late-Stage Diagnosis
When Casey and David decided to take Andrew to the doctor at Albany Med, he had been sent home from school with a fever several times.
During Covid, if a kid had a fever or even the slightest hint of a cough that only a dog could hear, you were still sent home to make sure that you did not infect the other kids.
Sure, Andrew had fevers here and there, but not one other symptom seemed to match up with a Covid diagnosis. But when Andrew developed a limp and walking began to get harder and harder, Casey took her boy in to have the doctor take a look.
Casey and Hospitals were BFFs During Covid
Casey was not bothered by the hospital. She was used to them at this point. Not six weeks before Andrew was diagnosed, Casey and David welcomed boy number two, Ashton, into their family.
Andrew was so excited that he had a little brother, but Ashton’s new little brother novelty wore off as Andrew’s pain got worse. It was only six weeks after Ashton was born that the family received the devastating news.
After blood tests were taken, Andrew's hemoglobin came back super low and that was the sign that it was the 'big C'.
And it was big too. Andrew’s cancer started with tumors in his neck, and they stretched all the way down his body through his chest and abdomen and into his pelvis. Neuroblastoma was everywhere.
Time for Treatment
Casey and Andrew had to get on the road immediately to get to a better hospital for the next phase of Andrew’s treatment. But, before they left, it was her social worker and Albany Med’s Ronald McDonald Family Room that brought a little ease to Casey’s mind.
In Albany, the social worker set them up with a room at the Ronald McDonald House in the city where they were headed. Not having to worry about where to stay made the trip a bit easier, but it wasn’t helping Andrew's pain levels.
" His body was fighting a war against itself and there was nothing I could do… "
-Casey about Andrew’s battle with Neuroblastoma
Ronald McDonald House Rochester
First stop, Rochester. There, the doctor collected stem cells for the first round of treatment. They were planning to follow a treatment called the Cog (Children's Oncology Group) Protocol .
They were in Rochester for two weeks visiting doctors and the medical team pushed Casey to start treatment immediately even though Andrew needed a little time. They persisted. A mother’s intuition kicked in and Casey didn’t feel right about the treatment or the timing at all.
Casey knew that Andrew needed to be at MSK Kids in NYC, but the elevated costs, the distance from home, Covid and so many other things were at odds with that decision. When her social worker told her that they secured space for them at Ronald McDonald House New York, Casey finally had the confidence to make the decision she knew was right for her son.
In a very complex, but snap decision, Casey and Andrew were off to NYC, reporting to Memorial Sloan Kettering Hospital and checking-in at Ronald McDonald House New York.
RMH-NY and MSK Kids: The Dynamic Duo
Luckily, Andrew’s grandmother, Casey’s mom was able to accompany them to New York. Moms always do seem to show up when you need them the most, don’t they?
At that time in the height of the pandemic, all Ronald McDonald Houses adhered to strict sibling guidelines and Ashton, three months old at that point, was too young to be in the House. So, he and David stayed home while the Moms and Andrew began their adventure in New York City.
Immediately, Ronald McDonald House New York staff set Casey and her mother at ease. The House also gave Andrew the structure that he craved. He got to come back to the same place every night after long hospital days of treatment. The same smiling faces would always greet them by name on the way into the House. Dinner was served promptly at 5:30 pm every evening. It was exactly as Andrew needed.
"…An escape from the hospital and more like home."
-Casey, on staying at Ronald McDonald House New York
Memorial Sloan Kettering’s treatment offering for neuroblastoma patients was far less intrusive and way more effective than any other in the world. Andrew’s body had time to recover from surgery each time before chemotherapy began again. All in all, MSK Kids took Andrew through two surgeries and three rounds of chemotherapy, completing the first two phases of treatment or what you might call Project: No More Neuroblastoma for Andrew.
Memorial Sloan Kettering offered the innovative and life-saving treatment and Ronald McDonald House New York provided the positive social determinants needed to give Andrew the tools to heal.
"As for New York City, I don’t think we would have been able to go to MSK and get him the treatment he needed if it hadn't been for the Ronald McDonald House. I couldn't afford it. We are a single-income family. "
---Casey on RMH-NY's help during a tough time
Keeping Families Close
At Ronald McDonald House New York, one of the core beliefs revolves around keeping families close while they go through what is usually a very stressful and scary time in their lives. RMH-NY usually encourages every member of the family to come to the House and stay close for the duration of the treatments. But, Covid had other things to say about that.
In another lucky turn, one month into the six months that Casey and Andrew would spend at Ronald McDonald House New York, restrictions were lifted, and Casey was immediately encouraged to have David and Ashton join she and Andrew in the House.
When his brother arrived, it made all the difference in the world. Casey could tell that Andrew was recovering more quickly from surgery because he wanted to go play with his little brother that he barely knew at that point. Instead of a week lying in bed filled with pain, Andrew was out of bed within days and on the floor beside his brother just being boys together. It was clear with Andrew that keeping his family close was the only secret ingredient needed to heal.
Taking Advantage of the House
The photograph above was taken by Casey. It was displayed during an art exhibit that RMH-NY sponsored in the Wellness Center on the 11th floor of the House last summer.
Casey is a super talented artist and it just so happened that there were a handful of very creative and talented artists in the House at the same time last year. They would all meet multiple times a week and use art as a therapeutic outlet.
Caregivers at Ronald McDonald House New York are urged to take time for themselves to regenerate or decompress when they can. This is how they promote their own well-being and remain the strongest they can for their child.
Last summer, these caregivers, who all happened to be mothers of children seeking treatment, were asked to create art pieces that reflected their life at the House. The group was so talented and so strong that the House hosted the gallery event to show off the unbelievable work of these amazing mothers.
For Casey, art on the 11th floor and the caregiver support group that met on Fridays for coffee talk were the moments of support she needed. It was also nice to sneak out of the hospital once or twice and bring Ashton back to the House for some focused mommy time while Dad stayed at the hospital with Andrew.
These were all activities that the family support team at the House urged Casey to do for herself in an effort to promote her own well-being and, in turn, strengthen Andrew's.
The Good News
Casey and the boy's dad, David, Andrew and Ashton spent about five months at Ronald McDonald House New York together. They were given the green light to go home when Andrew successfully completed the first two phases of his treatment and only had immunotherapy and vaccine rounds left to complete.
After they returned home, Casey and the family traveled back to Ronald McDonald House New York one week out of every month for Andrew’s immunotherapy rounds.
At the beginning of 2023 after a few rounds of immunotherapy were complete, doctors told Casey that there was absolutely no sign of disease anywhere near Andrew or Project: No More Neuroblastoma for Andrew was officially complete and a huge success.
Casey was thrilled and relieved and skeptical all at the very same time. More than anything, she was proud of her son and grateful for all of the assistance she and Andrew had received throughout a year that should have been so hard.
Andrew no longer has neuroblastoma.
"Being able to know that I could make the best decision I could, thanks to Ronald McDonald House New York and things like that. Being able to get him to the best doctors in the world, was the best I could do and at least I knew if things turned out not okay, I did the best I could."
--Casey, looking back on her time in NYC
To RMH-NY Donors
"Thank you. You changed our lives and I firmly believe you saved Andrew's. I don't think it would have been a good outcome if we had to go a different way. I really hope that you continue to donate to help kids like him. (Your donation) have been life changing for my family."
-Casey to RMH-NY Donors
Mothers Make Miracles Happen
Casey absolutely did the very best that she could do and because of her unending love and unwavering need to give Andrew the very best chance to heal, she was successful.
Casey’s strength is undeniable, but she knows that she couldn’t have done what she did without the help of some strategically placed friends and doctors, a great boyfriend, an amazing mother, and a Ronald McDonald House New York.
After this last year, Mother’s Day means so much more to Casey than it ever has before. Casey put in the steps (metaphorically) in 2022-23 and she has earned a very big…
