It was Friday the 19th around 1pm, I had just put my 19 month old son, Jett down for his nap. I love my son more than anything, but he is non stop and for my 9 month pregnant body, nap time was golden. It was my only time to sit down, rest my legs and just veg out. I heard the front door open and got so excited as I knew it was Ron and thought he was surprising me for lunch as he would often do. But when I saw him I knew something was off…really off.
I go to hug him and he sort of held my shoulders back and said, “You need to stay calm for the baby, just promise me you will stay calm.” Huh? I sort of nodded my head in slow motion as his words came out, “Kels, I have a brain tumor.” Then I started screaming, the whole promise to stay calm clearly went out the window. And that was the moment our life would change forever.
We hugged, cried, screamed (and I threw stuff as I have a bad temper) for over an hour. Ron had gone in for an MRI of his brain just a few hours before as he had been having what he thought was sinus problems for months. After two rounds of antibiotics our Dr finally recommended an MRI. She called him while he was driving to get lunch, he pulled over on the side of the road and heard little to nothing after she said “You have a brain tumor.” I peppered him with questions and all he could remember was that it was called an “ependa-something” and that he needed surgery in the next week. So we got on the computer and emailed our Dr directly to send us the details and that’s when we realized it was an ependymoma which is brain cancer. When I heard the C word, I felt sick to my stomach. Ronnie is one of the healthiest people I’ve ever met. He’s never had a broken bone, never been in the hospital, never gets sick and in general eats pretty healthy and exercises. I was so shocked and sad. The sadness was so overwhelming. Ron and I have been married nearly 10 years and he’s my best friend. How do you keep going when you know that the person all your hopes and dreams are invested in could be gone?
The Dr told us that he would need surgery in the next week. I was 5 days from my due date and we immediately started making plans for what would happen if he had surgery early that week and who would be in the delivery room with me or who would take care of Jett. It’s interesting how when something so terrible happens and you have kids involved you can’t let it overcome you, you just have to keep planning, stay strong, and think of them. So that’s what we did. I called one of my best friends Alison who lives down the street and broke the news. We were on a no phone call kick as she was our person to take Jett when we went into labor, so the only time you can call is if you are actually in labor. That conversation was surreal. I’d known for maybe 2 hours that Ron had a brain tumor and had to call one of my best friends to ask her to take his place in the delivery room if necessary. It was a total mindfuck.
A few hours later Jett woke up from his nap and even though we had just gotten the worst news you can ever get, I had to pull myself together and entertain him until bedtime It was the longest afternoon of my life. I normally don’t let him watch too much TV, but that day Lion King was our savior and he thought it was Christmas. At least one person in our family was happy. I think back to that day and am so glad that his little 19 month old brain couldn’t understand what was going on. If this were to happen now he would know instantly that something was wrong and would flip out, it’s crazy how much he has changed in just 4 short months.
After we put Jett to bed, Ron and I continued to research online and tried to learn as much as we could about adult ependymomas. It’s a tough one to find info on as it’s really rare for adults, but really common in children. We had an appointment with Ron’s neurosurgeon at UW scheduled for Monday morning at 8 am and we were dreading the long weekend of uncertainty. But of course, another curve ball was thrown at us…I went into labor.
I should have realized what was happening sooner than I did. After Jett went to bed I had my first moment alone in the shower and had a serious meltdown. Not just a little cry, but one of those where you can’t breathe or catch your breath and might pass out cries. Yeah, so much for staying calm, Kels. I had my first contraction during that episode and passed it off as a Braxton Hicks contraction. Later that night I woke up with a real contraction and within an hour was ready to have a baby, oye. Stress induced labor is fast and painful and we barely made it to the hospital. Luckily everything went well with delivery and our sweet Beni came into the world as perfect as can be.
Ron and I made sort of a silent deal to not talk about the news we had gotten earlier that day as we wanted to have at least a few hours to enjoy our sweet girl, but that is easier said than done. After she was born, I wanted Ron to hold her and he did for the first 45 minutes as I watched them with tears in my eyes and thoughts running through my head that no new mom should ever have. I just kept thinking will he be there to walk her down the aisle? Or even worse will he be here next year to see her take her first steps? The uncertainty is the most painful part of all of this.
We headed home Sunday afternoon and less than 12 hours later made the trip back to the same hospital Beni was just born at to meet our neurosurgeon. The Drs knew I was 9 months pregnant, but were blown away to see that in the 48 hours since scheduling the appointment our daughter was born. Beni was an angel during that first visit, she slept calmly in my arms as the Dr went through the terrible news. Ron had a tumor the size of a racquet ball smack dab in the middle of his brain. He would most likely lose his hearing on the left side which he did, it’s only at about 25%. He would probably lose some swallowing capabilities, which he also did as he has a paralyzed vocal cord and pallet. They talked about potential for facial paralysis, seizures, balance issues and the list went on. I sobbed into tissue after tissue as the bad news kept coming. Things like 12 hour surgery, feeding tube, drain in his head, were thrown around like you could be talking about a Grey’s Anatomy episode. When the topic changed to life expectancy I nearly threw up. Ron was so solid during all of this, which isn’t a surprise. He’s always been the rock, the tough one. When Jett had heart surgery the day he was born, I was a complete mess as the ambulance transported him to Seattle Children’s hospital and I was left behind at Overlake in Bellevue where I delivered. He face timed with me the entire time keeping me calm as Jett was wrapped up in his baby incubator and transported to the NICU. (Yeah, we have really bad luck with babies apparently). But this is how Ron is. He’s cool, calm, collected and takes in the facts before he reacts emotionally. I’m the exact opposite, maybe that’s why we work well together. So during that first appointment he asked question after question while I cried. I will just blame my patheticness on having a baby 24 hours before.
We learned that surgery would actually be a few weeks later as his case would need to be discussed by the UW tumor board and he would need a slew of tests done beforehand. It ended up being 2.5 weeks of hell. We were in this weird limbo of having a newborn and trying to be happy about that, but also living with immense fear of what was to come. I also had some serious guilt issues. Ron had complained of symptoms for over 2 years and I never caught on that something wasn’t quite right. He was playing basketball two summers before and would come home and say “It’s so weird, everytime I turn really fast I get kinda dizzy.” We attributed that to him being out of shape and that he just needed to exercise more. He would say things like “When I’m driving I can’t focus on things that are moving outside of the car at all.” I think I just shrugged it off like whatever. Every time he would cough, sneeze or yell loud he would get a headache. He wasn’t even able to give Jett a bath as he’d have to bend over and would get a really bad headache and we thought it was just sinus stuff, so again, we waited another few months to get it checked out. Now I think back and am like seriously, Kels, you didn’t think something was up? It just kills me.
Those 2.5 weeks dragged on and on and Ron got really depressed. Something like this hanging over you just eats at you and drags you down. He tried to put on a brave face in front of the kids, but started sleeping a lot, crying often, and had immense guilt about what he was putting me through. I took care of both kids by myself on little to no sleep and it left nearly nothing left for Ron, something I have terrible guilt about. He needed me more than anything else and I just couldn’t be there and it broke my heart. I was physically there, but always had two crying babies by my side. I slept on an air mattress in the nursery as Ron needed his rest to be strong, but this only isolated him more. Ron’s parents came to help and went to most of his appointments with him as I couldn’t take Beni to the hospital every time (it’s just not healthy for her), and they were a great help, but it’s not the same as having your spouse and best friend by your side. The guilt I felt just kept piling up. When all of this started I had no idea how much guilt one person could have about things that are out of their control. I had guilt that Jett was getting so much less attention from Ronnie and I. I had guilt that I wasn’t able to dote on Beni and be happy and take 5 million pictures of her. I had guilt that I couldn’t spend the time I wanted to with Ron. Our house was a very depressing and sad place to be.
The day before the surgery was Mother’s Day and we tried our best to just think about other things and hang with the kiddos. But around 9 when it was time to head to bed as we had to be up at 4 am, that’s when Ron and I both really lost it. The reality hit that it may be our last night together and that he might actually die in surgery. We barely slept and just hugged and cried on each other. We didn’t even need an alarm for 4 am, everyone in the house was up, moving silently and methodically through the house, not talking as no one knew what to say.
The morning of the surgery was worse than any other part of this whole process. I was alone with Ron in the prep room while they got IV’s ready, put markers on his head, did an MRI and we waited for 2 hours for him to be taken away. We just stared at each other without talking much as we were both just barely hanging on. I walked with Ron while they wheeled him in the bed to the operating room, we held hands and then like that, it was time to let go. I told him I loved him and he was gone. He kept going and they dropped me at the waiting room where I sat in the fetal position for 10 minutes screaming into my t shirt until my in-laws found me and picked me up off the dirty hospital floor.
Hope I can find the time to write about the surgery and aftermath in the next few days. Typing with one hand while holding a sleeping baby makes things a little difficult.