We all four followed the nurse into the ultrasound room, it was room number 5 in the Maternal Fetal Medicine wing of OSF in Peoria, as I remember it vividly. Linds walked in and hopped (ok, it was more of a slow roll but hopped sounds more happy and this is a happy post so let’s go with hopped, ok? Ok. 🙂 ) So there she sat on the exam table while we all took our seats, very anxious for what was about to be broadcast on the TV screen in front of the exam table.
Let me stop here to explain the different viewpoints of the Grandma’s in the room. This is my Mom’s first grandkid, so regardless of gender she is clearly on cloud nine and overjoyed to be sitting there. My Mother-In-Law has three grandkids and they’re all BOYS! This will be her fourth grandson, so you can imagine how badly she wanted a little granddaughter but I failed to deliver on that one, sorry Deb! 🙂 Regardless of all that, Deb is incredibly excited to welcome her next little grandkid into the world, even if it means she doesn’t get to buy those cute little dresses and headbands with bows!
We all waited quietly as the sono-tech came in and introduced herself. She explained that due to this being a pregnancy that was now classified as high-risk and that we were technically there during our 20 week checkup window that she was going to perform a very in-depth ultrasound to do measurements and a health check on our son. It was a very awesome thing to watch my Mom’s, my Mother-In-Law’s faces both glow in excitement and tears fill their eyes. Pregnancy and being given the gift of a child as well as a grandchild is one of those life experiences that can be described as nothing short of awe-inspiring. It’s truly an unimagineably beautiful experience and if you’re going through it, you’re guaranteed to be rattled to the core with love; you’ll never see life the same.
We did all the measurements as I fought back tears of joy watching my first-born son roll around and move his fragile little limbs around, attempting to hide his face like he was wanting us to just leave him alone…sorry little dude, Mommy, Daddy and both Grandma’s are here ALL FOR YOU! We got to see all his little organs, his heart beating “thump, thump, thump, thump” and his little arms and legs including the hands, feet and digits! After measuring him to make sure he was on track, we even got to see a few 4D images and video of the little man and those are something that we cherish and watch whenever we are feeling down because like I mentioned before, everything just sort of melts away when we see him or hear his little heart beat! He measured right on schedule and the ultrasound tech told us some of the most encouraging news yet, “your little guy is a cute and active little thing and lots of activity means he’s a healthy little guy and he’s measuring right on for where he should be.” I grabbed Linds’ hand and squeezed it as I gave her a big ‘ol kiss on the forehead and then lips.
Our tech then headed out to get our doctor, Dr. Michael Leonardi. Let me preface his introduction by saying we had heard very positive reviews about Dr. Leonardi from our sister-in-law as well as a friend of mine from high school who had both had Dr. Leonardi for their respective high-risk pregnancies. I will also say that living in central Illinois and the rarity of this disease led us to schedule a few follow-up second opinion appointments because the likelihood of finding doctor that met our high expectations, had the experience we desired and that we felt ultra-comfortable with being located right here in central Illinois was incredibly unlikely. HOWEVER, after meeting Dr. Leonardi, it was super clear within a matter of minutes that he was EXACTLY what we’d be hoping and praying for. He has unbelievable bedside manner, is incredibly calming and incredibly thorough in his information and making sure that the patient is at the forefront of his interaction. He constantly reminded us of the sensitive nature of our situation, the rarity involved and that he was going to do everything in his power to provide us with the most information possible so we could make our decisions to drive our pregnancy how we wanted and feel confident in the decisions. His information was incredibly helpful, clear, unbiased and thorough. He even demonstrated one of the qualities that I greatly cherish in people, humility. He was able to say that he didn’t know all of the answers on how to treat our condition as well as the handle the pregnancy but he assured us that he had been in contact with our gynecological oncologist and they had already discussed our case for 3+ days now and they would mutually guide us down our path to healing and recovery. Our prayers were answered, Dr. Leonardi was our doctor that we were hoping for; I could have traveled the country and met as many high-risk OB docs as I could find and I could easily count on one hand how many I would like as much as Dr. Leonardi.
We were riding high, confident that the care we were getting was top notch and we would get through this pregnancy without any sort of anxiety issues due to the calming nature and plan that Dr. Leonardi laid out for us. He told us of the plan to meet with himself, our gynecological oncologist, the practicing nurses and some service area nurses the following Tuesday, May 12th, to our delight and we said our goodbyes. Now it was on to our next appointment with our gynecological oncologist.
Dr. Andras Ladanyi was his name and we didn’t know much about him before heading to his office at the Peoria Cancer Center (a branch of Illinois Cancer Care). A google search yielded some background information but nothing too crazy and almost no professional reviews on him were found. He was Hungarian, graduating from a University over there and coming to practice his externship in Chicago while studying at the University of Illinois – Chicago. He also was an associate professor for the Peoria branch of UIC so he was clearly a smart guy but was it enough?
Again, we knew of the ultra-rarity of Linds’ disease and we knew that being in Central Illinois realistically didn’t give us the greatest of odds of finding a doctor that we felt comfortable enough with to treat us that had the experience, bedside manner, personality, intelligence and innovative mind that we expected. However, it gave us a great deal of confidence to have a doctor that we thought so highly of, Dr. Leonardi, speak very highly of his colleague, eventually calling him a “biological genius” and “incredibly intelligent oncological mind” so we went in with an open mind and high hopes.
We walked into the Peoria Cancer Center, immediately noticing the high ceilings with seemingly floor to ceiling windows that let in loads of bright sunlight that day. The center is relatively new and the staff was very friendly, greeting us as we came in with a hearty hello and pointing us in the right direction to get us registered and started on that leg of our journey. We waited for a while to get the registration and subsequent labs completed and then headed upstairs with Lindsay, myself, my Mom and both of my in-laws and sat in the waiting room that overlooked a pretty pond that was right outside of Dr. Ladanyi’s office. The silence was eery, as we all sat there knowing that the news we were about to receive was going to be very hard to hear and then process. A nurse came out to get us and we all followed her into his office hallway, unprepared for what was to come. Just thinking back on it now, it stirs up some very real, very difficult emotions. I held Lindsay’s hand as we walked back and into our patient room and she sat on the exam room as the other 4 of us lined the halls of the room and we all sat in silence, awaiting the arrival of our doctor. “One step at a time” I reminded myself as I sat there motionless, letting my head spin with thoughts of what was to come. I thought back to a quote that we had learned when I was in boot camp that was very fitting for that moment.
“Success is not final, failure is not fatal: it is the courage to continue that counts.” – Winston Churchill
I had to remain strong for my wife, for my in-laws and for my Mom at that very moment, in that very room, no matter what. It was going to hurt like hell and it was going to test every ounce of courage and strength that I had in me but I had to keep my head up and stay positive to help every get through this. There was a knock on the door and the handle clicked open and an average-height, 30-something year old man with a slight eastern-european accent came in the door and began to introduce himself to everyone in the room…