By: Jennifer Hoffman
A normal day in the life of a three-year-old toddler should consist of running around, playing games and getting into mischief. For Lincoln Orzechowski, it couldn’t look any more different. Instead of spending his day watching Paw Patrol, Lincoln spends his time in and out of the hospital as he takes on his courageous battle with neuroblastoma.
“In July of last year, I took him to his 2-year-old check-up. His belly was bigger, but I just attributed it to being a little kid. He passed all the tests with flying colors,” said Megan, Lincoln’s mom. Despite passing those tests, Lincoln suffered from low-grade fevers and repeated ear infections for months. Doctor after doctor, test after test, and still no concrete answer as to why Lincoln was always sick.
That all changed when Megan took him to the doctor in November of 2018. The physician assistant noticed his distended stomach and ordered an ultrasound. “The doctor put his hand on my back and he wished me well. I just had a feeling something was up, something wasn’t right,” recalled Megan.
Well, something was up and it was four little words that no mother ever wants to hear about their child.
Your son has cancer.
Lincoln was diagnosed with stage 4 High Risk Neuroblastoma, MYCN amplified, which is a very aggressive form of cancer. Megan finally had an answer as to what was causing Lincoln so much distress, but it wasn’t the answer she wanted. “There’s no rhyme or reason as to what can cause cancer, he was just born with it essentially and it just took time to start growing,” said Megan. “Nobody in my family has cancer or his dad’s family has cancer. Nobody knows why it happened to Lincoln. You can’t even begin to understand it.”
After learning of his diagnosis, Megan took Lincoln to John Hopkins in Baltimore for his first round of treatment. He underwent 5 rounds of induction chemotherapy to tackle the tumor head-on, in hopes of being able to shrink it enough for resection surgery. Resection surgery was a success, but Lincoln was far from being out of the woods yet. Immediately after his resection surgery at the Children’s Hospital of Philadelphia (CHOP), he would undergo two stem cell transplants at John Hopkins.
Megan loved the doctors at CHOP so much that she wanted Lincoln to undergo proton radiation there in July of 2019, which would be administered over the course of 2 weeks. “No other hospital comes close to the way they care for the patients and families,” said Megan. “They really involve you in the thinking and they help you understand why they make the decisions that they make in a way that I just haven’t experienced in other places.”
Their next dilemma: where would they stay?
A social worker at CHOP informed Megan and Jeremy about Nick’s House, so they contacted HEADstrong about staying at the Swarthmore residence. The trio got approved to stay at Nick’s House, which was a huge relief for Megan and Jeremy since on top of figuring out living arrangements during treatment, they were hit with huge back to back medical bills.
For Megan, there were many factors that she took into consideration when trying to figure out where they would stay, but staying at Nick’s House made perfect sense. “I looked at what a hotel would offer us, and that would have been financially difficult. Plus, finding a place where Lincoln could play was important,” she remarked. “What Lincoln’s life would look like, we would be stuck in a hotel room (afraid to let him out of the room because he is immunocompromised). Ronald McDonald House doesn’t allow the flexibility,” said Megan.
At Nick’s House, Lincoln can be a kid. He can paint rocks with Jeremy, run around outside in the backyard, and chat with fellow Nick’s House guests. “We can create a healing environment here. That’s what I find really appealing, we can relax and we can do life,” remarked Megan. “Lincoln sits and chats with the other houseguests, and I enjoy seeing him interact with the other adults here. I appreciate that they’ve embraced him.”
Finding out that your child has cancer is something that no parent ever prepares for or even thinks about until it becomes a reality. “For Lincoln specifically, I find that I’m always trying to be present, which is always a hard thing to juggle – but more so now it’s how we can live the best life,” said Megan. “I think you always try to do that, but when tomorrow isn’t always promised, you just look at it differently.”
Megan knew she had to be there for Lincoln in every way possible, but she took it one step further and became engulfed in learning everything she could about his cancer and the recommended treatments for him. She says being the decision maker for her 3-year-old has been the biggest struggle throughout this experience, and by learning as much as she can, it helps her remain confident in the decisions that she is making.
Not only did she find comfort in support from the fellow families at Nick’s House, but she also found support online through a Neuroblastoma Moms Facebook page. “The group has really made me understand what options are available to me and to have the confidence to ask doctors questions I want answers to,” she said.
Lincoln doesn’t know life any other way, his normal is long hospital stays and his first friends are his oncology nurses. But Megan, her boyfriend Jeremy and Lincoln’s dad Mike are determined to make him as comfortable as possible throughout this process.
Lincoln just finished his proton radiation at CHOP, but his treatment isn’t over just yet.The trio will head back to their Severna Park, Maryland home where Lincoln will undergo immunotherapy. If all goes well his frontline treatment will be done in February of next year. Megan’s curiosity of care led her to stumble upon the DFMO Trial at Helen Devos Children’s Hospital in Michigan, which Lincoln could begin next spring. At the end of the day Megan is just doing what a mom should do, thinking of what’s best for her three year old son.
“I always think of what is in his best interest. Nick’s House is perfect, I’m so grateful it’s been great for our souls and for him to be a kid.”