All-Star Ivan

“For any other life event, you can plan and expect things to go the way you prepare them to go. This is not at all the case. There are just so many unknowns that you really cannot even prepare yourself for any of it. Often when things seem to get better, there is always something at the back of your mind that you are worrying about,” All-Star Ivan’s mom, Sarah

Childhood cancer fear and hardship do not go away when a child rings the bell ending treatment. Sarah's worries about her son will never go away. People assume that because he completed cancer treatment, their lives go back to normal. But nothing could be further from the truth.

Normal for Ivan and his family before cancer consisted of sports, activities and cooking dinner together. It was during one of Ivan’s favorite activities that they received the news.

Ivan, who normally loved being active and thrived around people, suddenly began getting upset about noise on the bus and in his classroom. Usually, he was the one making the noise, so this worried his parents.

Consistent headaches led to six trips to the doctor and an emergency room visit in the middle of the night. In the emergency room, they ordered a CT scan, but it did not reveal anything. They were relieved at first, but Ivan’s headaches only got worse, so his pediatrician suggested a CT scan with contrast.

Ivan was at baseball practice later that day when the doctor’s phone number popped up on Sarah’s phone.

“There I was sitting in the car watching my sweet boy when they said they had found a mass at the base of his neck and that we had to check into the oncology department the next day,” explained Sarah.

Their life changed forever during that practice.

Ivan underwent a series of surgeries and tests to determine the exact diagnosis. They learned he had a rare type of soft tissue cancer called Embryonal Rhabdomyosarcoma

Sarah’s sole focus turned to Ivan and being with him. She hadn’t even thought about how they would pay for all the extra expenses like gas and food at the hospital until someone asked.

Sarah carried the family’s health insurance, so she needed to continue working. Luckily, was able to do so remotely. Ivan’s dad, a realtor, also continued to work and cared for Ivan’s older siblings while Sarah was with him at the hospital.

Within those first four weeks of Ivan’s diagnosis, Pinky Swear Foundation was there to help. His family received a Pinky Swear Orange Envelope, which provides a $200 gift card and Letters of Encouragement.

“It was like love and comfort in one little package that we could use for gas or for groceries. It was one less thing to worry about,” Sarah said. “I feel like you get decision fatigue when you have a child that has a life-threatening condition. I kept it in my car and used it to gas up. Every time I did that it reminded me that we were not alone and that there were other families pouring love into us through their donations.”

Pinky Swear also paid a month of their mortgage through the All-Star Fund, allowing Sarah to stay focused on Ivan and not be distracted by things at home.

“It meant that I didn’t have to think about the mortgage,” Sarah said. “It allowed my focus to be totally with Ivan.”

Sarah said she could not imagine a childhood cancer diagnosis without having support. The emotional impact was beyond what she expected.

Ivan’s treatment made him vomit for days on end, among other symptoms. Sarah felt helpless, describing childhood cancer as being like the movie Groundhog Day with things happening over and over again and not being able to stop it. “It was like a constant panic attack,” she said.

It was also isolating. Sarah spent many days in the hospital room with Ivan and there were times that they couldn’t even leave the room to walk the halls because of the risk it posed to Ivan’s health.

Sarah and her husband felt isolated from each other, too, as they coped with Ivan’s illness differently and were rarely together in the same space. In the days when Ivan was home, time was filled with therapy appointments and keeping up on his medications.

While Ivan is now in remission and thriving, Sarah remains worried about the future. On the outside, she tells people things have returned to normal. But on the inside, she doesn’t really know what that means.

Families are forever changed by childhood cancer.

Sarah said the compassion of Pinky Swear donors made a real difference.

“These were loving angels coming down and caring for us at a time when we felt our world was crumbling,” she said. “Like the hope we felt when Pinky Swear paid our mortgage and when I was getting gas or feeding my family with this. From people who do not even know us, when we are in this fragile spot, it is life-changing.”