Langerhans cell histiocytosis. A very long name for a very rare cancer that’s been around for a very long time. (Since the 1800s!) It is commonly referred to as LCH, and simply put, it causes an excess of white blood cells.
Now, there are plenty of things a small boy might want an excess of – ice cream, hockey tickets, matchbox cars – but having too many white blood cells just won’t make that list. Why not? Normally, these cells help fight infection, but an excess of Langerhans cells can begin to form into tumors and cause damage to organs. And although 1 in 200,000 young children are diagnosed with LCH, the symptoms can be similar to that of an injury, so it can be hard to detect. That is, if there are any symptoms at all.
Imagine your 8-year old son falls down and hit his head while playing. It hurts, he gets a bump (which is good, right?), but there are no other symptoms. You keep an eye on the bump and after a few days, notice it is not going down. You’d take him to the doctor, because this concerns you. But I bet you are not prepared for what happens next.
Neither were Brandon’s parents. The doctor’s performed a CAT scan and the scan seemed abnormal to them, so they sent Brandon to Lurie Children’s Hospital for further evaluation. Ultimately, he was diagnosed with LCH and his parents couldn’t believe it.
“I was in shock – I always thought that wouldn’t happen. I had to step back, my mind-was racing, there was so much to look into. I was thinking, ‘I can’t do it’,” his dad, Jeff, remembers. Surgery was scheduled to remove Brandon’s “bump”, which turned out to be a tumor caused by the LCH.
Four days before the surgery, Brandon’s mom left home, leaving Jeff to care for Brandon and his 6 younger siblings, some of whom have frequent visits to their own specialists. She has not returned. This was almost a year ago. During Brandon’s recovery after surgery, Jeff had to return to work as a full-time firefighter/paramedic (someone has to pay the bills & provide insurance), so he didn’t get to spend as much time with Brandon as he would have liked to.
“Four days after his surgery, Brandon was out of the hospital and back playing,” says Jeff. Brandon, now 9 years old, is currently undergoing 52 weeks of chemotherapy, which started approximately 2 weeks after his surgery. Thankfully, Brandon hasn’t had many side effects from the chemo, although he has spent a few nights in the ER with a fever and a short bout of pneumonia.
Caring for this young, but large, family has been a challenge. Coordinating nannies, school, work and everyone’s doctor’s appointments is like having a second full-time job. Even Brandon pitches in to help out with his younger siblings, as any brother would.
“I try to balance the treatments with normal daily life, but the younger siblings don’t understand,” said Jeff, “Our trips downtown (in Chicago) are now to the hospital, not just ‘downtown’. We do try to visit the Pier when we have time.”
All those trips began to take a toll on the family’s finances, so Jeff’s social worker at Lurie suggested he apply to Compass to Care. They were quickly approved and we have been assisting them with travel expenses back and forth to Brandon’s treatments for just over 6 months.
“It is such a big relief – one less headache from trying to scrape up money and change for parking and gas. And the turnaround time from when I make a request, to having the money loaded onto the card, is really quick. I really appreciate that,” he said. “Every little bit helps a lot, more than you probably realize. You don’t think it does, but it does. We’re lucky we are not super far away, but it’s still about two hours in traffic. Thank you!”
Nevertheless, the road to recovery is long and challenging, your support of Compass to Care is helping to make it accessible.
Guess What? Their community has shown support in many ways. Brandon’s class even organized a Replace The Lace fundraiser for Compass To Care this past fall. So now many of his schoolmates (and their families) are wearing gold RTL shoelaces to remind Brandon they support him, and bring awareness to childhood cancer.