This is the post I’ve been dreading, been holding off as long as possible to sit down and compose. I don’t think about the day Jocelyn was diagnosed much, mostly because it hurts; I’ve blocked it from my brain in some sense.
This photo of Jocelyn was taken on May 5th, 2019 just 5 days shy of her diagnosis. Don’t let her grin fool you, she was feeling so many side effects that she couldn’t put words to. I have another blog post talking all about the signs she showed first, here.
On May 10th we woke up, got Jocelyn ready and headed to the hospital for her first ever MRI. Looking back we were so naive. As first time parents you never imagine your child could have a serious health condition, things like that don’t happen to people like us.. Boy, we couldn’t have been any more wrong in those moments before her scan.
“Jocelyn” the nurse called out calling us back to the room. Still we felt no worry with being there. Weight, height, vital signs; check, check, check. “We’re going to save Jocelyn the trauma and put her to sleep with a gas mask, then place the IV once she’s asleep.” Ok. Perfect. That seems painless, I thought. We followed the nurse back into the sedation/recovery area. “Please lay her down on the table with her head placed right into this head restraint. Give her hugs and kisses, we’ll be putting her to sleep now.”
I think this goes without saying, but prior to this day Jocelyn’s medical testing was nothing more than a simple blood draw and urine capture.
“I love you Jocelyn, I’ll see you soon.” As they lowered the mask towards her face, the sheer panic started; with a scream so loud, so unheard of before, I didn’t know how to react. I leaned in, held her close, brushed her hair.. “It’s okay Joce, It’s okay baby..” She screamed and screamed and screamed. I cried and cried and cried.
After what felt like an eternity, which really was likely less than a minute; the screams softened, her eyes closed and she drifted off to sleep. I left that room with the worst lump in my stomach. “It’s okay momma, she’s okay.” Is all I remember everyone saying. Never did I hear her scream so much. Never had I seen her so scared, frantically scanning the room trying to escape, trying to find me.
“This should only take about an hour. We’ll call you back as soon as she’s out.”
The waiting lasted forever..
Once we left the room Jocelyn was in, Josh and I went outside to get some fresh air. The conversation we had will forever haunt me. “I really think this scan is going to be pointless. There can’t be anything wrong with her brain. We’ll be back at square 1 once this is over.” Those were the words we shared with each other. Cancer was never something that once crossed our minds, it never came up during my google searches of her symptoms, plus it could never happen to my child. She’s our perfect healthy baby. So naive.
We went back inside, and headed towards the cafeteria. Most of the meal was small talk about what we should do over that weekend. After our breakfast, it had been roughly an hour so we headed back to the waiting room. Surely she’ll be done soon.
We waited, and we waited, and we waited. Another hour passed by the time I looked at the clock. “Didn’t they say it would only be an hour.. what’s taking so long..?” About another 30 minutes passed and her nurse finally came out. “So sorry things are taking a little longer than expected, we’re just finishing some things up. She should be out soon!”
No part of her face indicated something was wrong. But she knew. She knew at that moment what news we would soon be hearing. She knew they were currently contacting the Children’s Hospital to see what they should do. She knew it all. But, we didn’t. We didn’t know all this extra waiting meant something was wrong. So naive.
30 more minutes passed and she came out again. “Alright, we’re ready for you, you can follow me.” Phew. finally, we could see our sweet girl again. We followed her back into the initial check in room.
We were so unprepared for what was to come..
“I’ll have you guys sit here in these chairs. I’m sorry to tell you, there was an abnormal finding on your daughters scan, you’ll be getting a phone call to discuss it in just a couple minutes.”
My heart dropped. My stomach dropped. My face dropped. Everything dropped in that moment. What does this mean.. What is an abnormal finding. Every single part of my body was shaking. This can’t be right. This can’t be happening. She can’t have something wrong with her brain.
*RING* *RING* “Josh I can’t take that call, I can’t do it. Please answer the phone. I can’t.”
“Hello… yes, this is her father.. okay.. okay.. okay.. no I don’t know where that is located… okay.. thank you. Bye..” His face was flat, cold, full of terror; a look I had never seen from him before. “What’s going on!?”
“That was an oncologist from the children’s hospital in Salt Lake. She said the scan showed a tumor. A large tumor.” I started hyperventilating. I couldn’t make it stop. It wouldn’t stop. The tears, the shaking, the heavy breathing. It all wouldn’t stop.
“I don’t know anything else. It’s a tumor. They want her to be rushed by ambulance down there.”
The shaking and hyperventilating got worse. “Ambulance!? What.. Why… How is this happening!?” I sobbed and managed to get out. Josh’s face was stone cold. He was trying to process what he just was told.
I composed myself and picked up my phone to call my mom. “Hello? What’s going on!?” “Jocely…. ahhhhh” I sobbed and sobbed. I couldn’t get it under control. I couldn’t speak. Josh’s mother took the phone from me and told mine the news. All I could hear was a gasp, and a cry out of “WHY”..
The next hour was a blur.. We were finally brought back to see Jocelyn. I couldn’t tell you anything about that moment other than I held her and cried. We managed to talk the doctors into allowing us to drive ourselves to the hospital. We couldn’t put ourselves or Jocelyn through any extra trauma than there already would be. At this point all I was thinking was this was a tumor that would be removed and things would be okay. Cancer still hadn’t crossed my mind. No one mentioned the actual word cancer. They only said a tumor.
As we left that facility the nurse walked us out. “I am so very sorry. I am so sorry. This is such a life changing day for you guys. I’m sure we will be seeing you all often.” What does she mean!? Why is she saying these things!? Why is it so life changing!? None of her words made any sense to me.
We began our drive to Primary Children’s Hospital. On the way down, phone call after phone call came in from various family members asking what was going on. I didn’t have anything to tell them. I didn’t know what was going on, I had no clue as to what would come.
“Do you guys know what an oncologist is for?” Josh’s mom spoke from the back of my car.
“Yes.” was all Josh said.
I didn’t know. I typed “oncologist” into my google search engine.. “CANCER… CANCER.. CANCER…” Was all that stood out. No.. no.. there’s no way she has cancer.. Jocelyn can’t have cancer.. Brain cancer.. no. I sobbed and sobbed the entire way to the hospital.
That afternoon was a blur..
We arrived at the emergency room, they knew we were coming and brought us straight back. Many different people entered in the room, no one really ever telling us what was actually going on. I don’t remember much from this afternoon. I remember an ER doctor coming in to show us the images of Jocelyn’s head. I honestly couldn’t tell you my thoughts in that moment. I remember him scrolling through the scans, explaining the size to us, and I blacked out after that. I have no idea what happened during that conversation. It still didn’t hit us that this was cancer, we still at this moment weren’t told this was cancer.
The next doctor that came in was the oncologist that Josh spoke to on the phone. We didn’t know it back then but this specific oncologist would follow us throughout our entire journey, from start to finish. We would develop such a strong bond and grow to love her. Again, I don’t remember much from this conversation. I remember having to tell Jocelyn’s entire symptoms once more; mostly the only thing I recall during these talks was cuddling Jocelyn on the ER bed, not wanting to believe this was true.
I remember her oncologist telling us Jocelyn would be staying in the hospital for a while. She would be going into brain surgery the next day to biopsy the tumor and possibly remove it depending on the preliminary results. Our mouths dropped. We obviously knew deep down she would be going into surgery but to hear it was happening the next day was the largest blow. She explained to us the next steps would really be determined based on that biopsy and we would connect in a few weeks.
At this point we still didn’t hear the actual word cancer. We didn’t know this was cancer. We thought the biopsy was going to determine if the tumor was malignant or not. We still carried a bit of hope that once the tumor was removed we would be done. This was until the Neurosurgeon walked in.
I think above any of the discussions we had in the ER that day, this one was the most memorable. He began his talk with simply telling us how the surgery was going to play out. He would be going in and assessing the state of the tumor, he would remove a small part and send it off to be biopsied. Depending on what the initial results came back as, he would either proceed with a complete tumor removal or close up. During the surgery he would also place a VP shunt; its purpose was to relieve all the built up spinal fluids the tumor had caused. Then the biggest question came up.
“Will the biopsy determine if the tumor is malignant or benign?” His answer was the largest bomb drop of the day.
“No. The tumor is definitely malignant. I know that for sure just by looking at her scan.”
The tears started falling again. No. No. No. This wasn’t happening. This couldn’t be happening. Up until that moment it didn’t fully hit us, what our future had in store. While we were still clueless about the extent of it all, we now knew this wasn’t good. Brain cancer. How could our perfect daughter have brain cancer?!
Everything after this moment was a complete blur. I remember calling to tell my mom it this was cancer. I remember the cries of sheer terror on the other end of the phone. Then talks of trying to arrange travel to Utah, to be with us. I remember the ER eventually transporting Jocelyn upstairs to a room, to prep for the next days surgery. I remember Josh and myself having to drive home to grab some clothing for ourselves and Jocelyn. We still didn’t know how long her stay would be. The only thoughts running through our minds were how could Jocelyn have cancer.. how could this happen to us? How could our precious baby be heading into a brain surgery tomorrow? What’s going to happen to her? What’s going to happen to us? I’m pregnant… with twins.. how am I going to survive this cancer diagnosis while taking care of myself and the babies?
All I remember is crying. Crying all night long. Scared for the unknown; angry at the world, angry at her pediatrician who took this long for us to find out. Why us.. Why our Jocelyn..