“What starts out as a seemingly typical day, has the potential to change your life forever. You never see it coming. One day you think you know your life and where it’s going… And the next day, everything changes. You are thrust into a world you never imagined living in. For me, it was a Thursday of one of the busiest weeks we had had in a while. I listened to the chatter coming from the back seat as I pulled into our pediatrician’s office parking lot. The final appointments of this hectic week. Ready to get this over with, I glance in my rearview mirror as I park. My eyes are met with my son Jonathan’s bright blue eyes. I hope he behaves in there, I know he will be talking to every single person he can, interrupting conversations, asking other kids to play with him. We are here for his routine 7-year checkup, I have no concerns to discuss regarding him: he’s healthy, growing, and learning. Routine checkups are the extent of his medical needs. My eyes then shift to the infant car seat next to him, my youngest son Jameson also has a routine checkup: 4 months. For him, I do have a small concern to discuss with his pediatrician. I’m certain he has an umbilical hernia, but now there’s a new bump and his belly appears too big, maybe. But he is growing, chubby, healthy, and happy. The calmest, easiest baby I’ve ever had, by far. He does not appear sick at all, never has. So I’m sure whatever is causing his little belly to appear swollen cannot be anything too serious, but I am anxious to hear what his pediatrician thinks about it.
My daughter Regan begins to grumble ‘Mom, let’s get out!’ I turn my eyes towards her, on the other side of Jonathan. She looks so cute in her brand new pink glasses. It feels a little strange not having an appointment for her today. This hectic week of appointments began with her ophthalmology appointment, where she was prescribed her first pair of glasses. Followed by an appointment of my own, picking up said glasses, and then Regan’s therapies; physical and occupational, twice a week, every week. We have been drowning in appointments for her for 4 years now. When Regan was 7 months old, she was diagnosed with hemiplegic cerebral palsy, caused by a stroke in utero. Did you know kids, babies, and even unborn babies can have strokes? I didn’t. Up until then. I now know more about pediatric strokes than I ever imagined. But she does so amazingly well and works so hard in therapy. You cannot even tell she has had a stroke, or has cerebral palsy by simply looking at her. I have known for years it could be much, much worse. I have been so thankful for years that it isn’t. My life as a mother of three, one with special needs, has been nothing short of hectic. But I love it, I’ve always wanted to be a mom. And I am so thankful that after losing my first three pregnancies in the first trimester, I get to be the mom I am.
I circle around my car, unloading my three kiddos, and head into the pediatrician’s office. The waiting room is the worst. Constantly pleading with my oldest two to be nice, share, calm down. Don’t lay on the table, pick up those magazines, shhh. I leave Jameson in his car seat and cross my fingers they’ll call our name soon. Finally, it’s our turn. We make our way back to the exam rooms. When the pediatrician comes in, I am met with relief. This crazy week is almost over, and I absolutely love our pediatrician. She examines Jonathan, he’s great – perfect, as always. Then I place Jameson on the table. She begins her exam and I mention that I’m concerned about the size of his belly. ‘Does it look too big?’ I can see concern in her face immediately as she looks at his belly. My heart drops. She palpates his side and says, ‘I can feel his spleen. I’m going to give him an X-ray right now.’ Something is wrong. No. What? There can’t be. He’s literally never fussy unless he needs something, and then he’s fine after that need is met. He’s never been sick.
The nurses come in and carry my baby off to be X-rayed while I wait in the tiny exam room with my very energetic, bored older two. When our pediatrician comes back in, I can see the fear on her face. I feel the air leaving my lungs, my chest feels so heavy. She tells me his liver and spleen are enlarged, so enlarged that the radiologist who read his X-ray asked her, ‘how sick is this baby?’ He’s not sick at all! He’s smiling and laughing, he’s perfect. She wants him to have an ultrasound and blood tests done that day. Unfortunately it was almost 4 p.m. at this point and they couldn’t get him scheduled for an ultrasound until the next morning. Leaving the office and driving home are a blur. I can’t believe it. Something is wrong with my baby. But what?
As soon as we get home I head straight to Google, of course. I keep seeing ‘cancer’ as an answer for an enlarged liver and spleen. I terrify myself at the thought of my perfectly healthy, happy baby having cancer. But it can’t be that. That’s the worst case scenario, not the actual scenario, I tell myself. Even though this thought stays on my mind, I cannot even fully comprehend that cancer is an actual possibility. The next morning, my husband and I head to our local hospital for Jameson’s ultrasound. They scan all around his belly for at least 45 minutes. Taking measurements, talking with us. The technicians can’t tell us anything, something I already knew going in. I’m very worried they’ll want to admit him to the hospital after the scan. The scan ends and they tell us they just need to make sure they got all the pictures the doctor will need. So we leave Jameson laying on the table, shirt open, just in case they need more pictures. Are they delaying? Does his ultrasound look really bad? I try not to let the worry consume me. The technician comes back in and says we have all the pictures we need, she just needs to write down all of the measurements for the doctor. She will be back. Every time she leaves and comes back we hold our breath, waiting to hear our situation is emergent. But finally, she comes back and tells us we can go to the lab to get the blood work done and then go home and it might take until Monday to hear the results from the doctor. The relief that came over us was visible. I felt like I could actually breathe for the first time since his X-ray the day before. It must not be that bad. My husband and I exhale simultaneously.
As we are in the lab, they are preparing his little heel for a prick to collect the blood for his tests. My cell phone rings, I recognize the number as my pediatrician’s office. I answer it, and she asks me if they have taken his blood yet? I informed her we were getting ready to right now. She urgently tells me not to let them take the blood. She tells me we need to get in the car and drive straight to Children’s hospital in Omaha. (Roughly 25 minutes away) She says the ultrasound did not look good and because it is Friday we need to get to the Hematology-Oncology clinic NOW so they can begin tests. Oncology? I feel tears begin to well up in my eyes. Sobs come from my chest, uncontrollably. This cannot actually be happening. I tell my husband to get Jameson dressed, in his car seat, and out the door now. I could not stay in that lab. I wanted to get to the clinic NOW. I rushed toward the elevator, a literal sobbing mess.
As soon as we arrive at the Oncology clinic, we know this is very serious. My daughter suffered a stroke in utero, I am no stranger to specialty clinics and scary doctor visits. But this… This was nothing like I’d ever experienced before. The nurses and staff were being overwhelmingly nice and accommodating. One of the nurses came in and asked us, ‘what kind of ‘learners’ are you? Reading, hands on, listening?’ I felt like I hadn’t taken a breath or blinked since we arrived, as I stared at her. Begging her to just tell us. Tell us why we’re here, tell us what’s going on with our baby? But then she leaves… When the oncologist finally came in, he informed us that Jameson’s ultrasound revealed two large masses in his liver, and another large mass behind his kidney. He tells us the masses are most likely neuroblastoma. We’re going to collect some of his urine to confirm the masses are neuroblastoma. He says we will be admitted today and run through a series of tests to stage the cancer. A couple hours later they decide we’re not going to admit him today, instead will go home where Jameson can be comfortable for the weekend, come back for an MRI on Monday and go from there. They collect his urine to send off to the Mayo Clinic and send us home.
Our perfect, happy, healthy baby boy has a belly full of tumors. Cancerous tumors. How did I not know this? Is he going to live? Why him? Why my innocent baby? I thought I already knew shock and devastation. I had no idea just how strong these emotions could and would be. Suddenly nothing else in the entire world mattered. My baby had cancer. How could I ever think about anything else again? Every single other thought seemed so insignificant in comparison. While I’m glad we had that weekend at home before we began down this terrifying road, it was absolute torture worrying about his and our future. The amount of things to worry about was endless. I researched and learned everything I could about neuroblastoma that weekend. It is the most common cancer in infants. The younger the age at diagnosis, the better chances of a good outcome. Treatment is sometimes as simple as watching the tumors, as some will eventually go away on their own. While most other times chemo, surgery and/or radiation are necessary. Many strides have been made in recent years regarding the treatment of neuroblastoma. As Monday approached, we were ready for more exact answers. Ready to have a plan and to start healing our baby boy.
Jameson was admitted to Children’s after his MRI that Monday morning. The MRI revealed the tumors in his liver are causing his liver to take up approximately 80% of his abdomen. How his liver still functioned perfectly, is a mystery. How his other organs still functioned perfectly under such pressure, is a miracle. The MRI also revealed the cancer had already spread to his skin, muscle, and bone. Jameson had his first surgery the following day. They cut my tiny baby’s belly open to remove a piece of his liver for biopsy. They took bone marrow samples from his hips, and they placed a central line in his chest to be used for chemotherapy. On Wednesday he was officially diagnosed with stage 4 neuroblastoma. Chemo is his only treatment option, and it needed to be started as soon as possible to begin shrinking his tumors before they started causing organ failure. The next day, exactly one week after his routine 4 month checkup, my baby boy started his first round of chemo. He will have 8 rounds total, and will most likely need surgery at the end to fully remove his primary tumor.
The amount of work that goes into caring for an infant on chemo is unimaginable. The hospital has an educator whom I met with multiple times during our first stay to learn all about how to properly care for my baby now. His central line requires daily maintenance, learning about blood counts and how to avoid exposing my baby to anything that could make him sick. How to live daily life with two older siblings in school, during winter, and not expose my baby’s very fragile immune system to germs. It is all so overwhelming. My plate was full before this. How am I going to do everything that needs to be done now? The emotional turmoil on a daily basis is gut wrenching. But, I’m a mom. I’m Jameson’s mom. I need him to be so strong, so I need to be so strong for him. My baby is literally fighting for his life right now. Enduring so much trauma, just to live. I am so glad he will not remember any of this when he is older, I hate that I will remember every single moment. Even when I feel so weak, I cannot break. It’s not an option. This is my world now. I never would have imagined living here. But this world, although different and more terrifying than most, has its own beauty. This world forces you to appreciate every single moment you have with the people you love. Every moment, every ‘little thing’ is precious and reason to celebrate.”
This is an exclusive story to Love What Matters. For permission to use, email Exclusive@LoveWhatMatters.com.
This story was submitted to Love What Matters by Rachel Camp of Council Bluffs, Iowa. You can follow Jameson’s journey on Facebook. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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