It wasn’t a typical birthday party.
When Daniel Kalenov arrived for a celebration of his 40th, he knew he’d be spending time with close friends and family. What he didn’t know, though, was that his wife, Michelle, had a secret plan.
About a year earlier, Daniel had been diagnosed with a skull base chordoma. A self-described type-A personality, Daniel runs his own real estate investment firm, travels extensively, and most importantly is a husband and proud father of two young children.
The diagnosis was a life-changing event.
As Daniel and Michelle sifted through the Internet, looking for information about chordoma, one resource stood out: the Chordoma Foundation. The two connected with the Foundation, and with our help, found a pair of expert surgeons who, together, were able to treat and remove Daniel’s tumor. Today, he is in recovery.
With Daniel’s 40th approaching, Michelle wanted to celebrate her husband’s life, while also giving back to the Chordoma Foundation. The birthday party would serve a dual role. They would have fun with friends, and raise funds to advance the research and development of new therapies for chordoma.
As for the fundraising portion of the event? That’d be a surprise to Daniel.
The Chordoma Foundation recently had a chance to catch up with Daniel and Michelle, who have been married for 11 years, to talk more about their journey with this disease and their recent fundraiser, which ended up raising an incredible $18,000.
What was it like to receive the diagnosis of chordoma?
Daniel: It was obviously world rocking. Life shattering. I’d had a couple near-death brushes in the past, but this was the first time it really scared me. As a father and a husband, my biggest concern was, would I be around to provide for my family? And to enjoy and experience all of life’s greatest moments? I kind of saw my life flash before my eyes, both in terms of everything I’d done and not done. But also all the stuff in the future that I might potentially miss if this condition got the better of me.
After the diagnosis, what were your conversations like together?
Daniel: Michelle was extremely goal oriented. She was laser focused. Having worked in the healthcare world, and just naturally being “go-getters”, after we had a good cry our discussions turned to, what are we going to do next? How are we going to put together a plan of attack? We needed to understand this condition, and, more importantly, find the best possible treatment.
Michelle: Our insurance’s network of neurosurgeons had told us it was a water cyst, and we didn’t need surgery. We weren’t willing to just take one opinion; we had our goal to get multiple opinions from the leaders in chordoma research and surgery. I wanted to make sure that we increased our chances of him surviving and getting a total resection, and being here to watch our children get married and grow up to be young individuals.
How was the Chordoma Foundation involved in the process?
Michelle: The day that Daniel got his MRI, a team of neurosurgeons looked at it, and said it looked like a chordoma. As soon as we heard the word chordoma, of course we researched it on Google. And the Chordoma Foundation came up. I saw an article about Josh [Sommer, the Executive Director of CF], and I sent him an email saying, I’m a wife with two small children, and I want to make sure [Daniel’s] going to the best surgeon there is in the world. Josh instantly scheduled a call, and he pointed us in the right direction, so we could make our own educated decision. Daniel’s mother also reached out to the [CF] patient support staff, who played an instrumental role in helping her navigate through this experience.
What kind of treatment did you end up receiving?
Daniel: I went to University of Pittsburgh Medical Center (UPMC) and I had a transsphenoidal resection by Dr. Paul Gardner and Dr. Carl Snyderman. When we met them, we just knew that it was the right choice. And we felt so relieved because we finally were able to see the light at the end of the (sometimes dark) tunnel. Not that the answer was perfect. Nothing about chordoma is definite. But they really helped close the gap in terms of the unknown part. All that was left to do was the surgery and recovery.
How have you two managed all the challenges as a couple and as parents?
Michelle: We have our own business, and we had team members who took over our responsibilities. But from a parent standpoint, it was hard. We had to be away from home for weeks at a time, and for someone who’s always had trouble asking for help, it wasn’t easy. But I learned that friends in need are friends indeed, and ours really came through.
Daniel: I think the toughest part of the recovery was psychological. I was having panic attacks, anxiety, some of which had started even before the procedure. But learning to cope with that anxiety and that uncertainty has been a silver lining in that it’s prepared me and Michelle for dealing with almost any other difficulty in life. This chordoma experience set the bar in terms of what one couple—one family—can endure and triumph over. Any future trials that come our way, and they will, are going to be a piece of cake.
Michelle, what inspired you to throw a surprise fundraiser?
Michelle: A few minutes before Daniel went into the OR, he said something along the lines of, “If I come out of this thing in one piece, I really want to give back to the Chordoma Foundation so I can ensure I am around to walk Mila (our daughter) down the aisle at her wedding and help Max (our son) grow into a successful, young entrepreneur.” He wanted to donate and help advance their research for a cure. And I figured, what’s a better gift than to have a surprise fundraiser? I had a goal of $15,000, and I knew that all of our friends and family would support that. And I pushed it to $20,000, because you always have to have a stretch goal. We came just $2,000 short of that.
So what were some of the highlights of the night?
Daniel: Well we had fire-breathing belly dancers. So that was pretty awesome.
Michelle: We had a photo booth with props. Friends and family were taking fun pictures. We had speeches and slideshow presentations with pictures of Daniel.
Daniel: Michelle presented me with this elegant plaque. And it had the words inscribed in it: “With love and appreciation for your inspiration and friendship, we donated to the Chordoma Foundation. Happy 40th birthday, love your friends and family.” When I read that I just—it was very emotional. I kind of broke down. It was the best gift that anybody could ever ask for.
Is there any other wisdom you’d like to share with chordoma patients?
Daniel: Don’t be afraid to reach out for help. You cannot be an island, because getting through something like this alone is very difficult, but not impossible.
Michelle: I think it’s extremely important to be your own patient advocate. It’s exhausting to travel around the U.S. to get opinions. But at the end of the day, we’re still here, he’s still here, and he probably got the best care. It’s also important to stick together as a team, and be as positive as you can be. Because it will pass, and you will get through it.
This interview has been condensed and edited for clarity.