“Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside its chest.”
We arrived at the University of Iowa Hospital around 4:30 pm. My mom pulled us up to the main entrance, and I pushed HJ in his stroller as he clung to his giraffe. I approached the main desk and the lady asked me where I needed to go. I opened my mouth and said, “3JC West” and then tears streamed down my face. It was obvious the lady had this happen a time or two and she pushed Kleenex towards me and grabbed a map. She told me to go left, to elevator H, and take a left after that. HJ got excited about going to the H elevator and I took a deep breath and pushed forward. I pulled myself together during the walk, and thought I was under control when we stepped off the elevator. I took a left and walked. And walked. And realized I was coming to an end. Frustrated, I looked at my map and turned in a circle.
A young women approached me and asked if I needed help. I told her I was supposed to go to 3JC west and she said I had already walked by the pediatric hospital check-in. This threw me for a loop. I didn’t realize I was checking him in. I don’t know what I thought, but I was certain my baby wasn’t supposed to be checked-in. It was just an appointment. And the tears came again. She walked me to the check-in and let the nurse know I was there. The nurse had been expecting us and told us to follow her.
She walked us to a bank of doors. They closed behind us and opened to another bank of doors. We were in the isolation area of the children’s hospital. She led us to a room and told us we were lucky to get such a big room. I snickered at the thought of luck. And noticed the rooms around my son’s were decorated with signs, names and items that showed the patients behind those doors had been there for quite some time.
I was answering some questions when my sister and her family walked in, followed by my mom. My dad arrived shortly after, and the room was crowded. I was grateful for all the support. HJ was so excited everyone was there to see him, and thought it was great fun. The first round of nurses came in and talked for a bit. Then the first round of doctors. The doctors goofed around with HJ and warned him the nurses were mean. They played with his giraffe and offered him stickers.
Then the nurses wanted to draw blood and start an IV. The first vein blew. Then the second. HJ was screaming and crying. The third vein wasn’t good. They told me his veins were fragile. The fourth and final attempt, I don’t even know what happened. I was trying to distract HJ, but I heard the nurses cursing and laughing. One ran to the sink to grab paper towels and I noticed blood all over the floor. My sister’s face had turned white and she told me not to look. Somehow, the IV got in, and they drew the blood they needed, but there was blood all over, HJ was upset, he needed the sheets changed from all the blood and once again, I felt out of control and broken.
We were finally able to place an order for food, and while we waited, another doctor walked in as I laid next to HJ. She introduced herself and told me she was the oncologist. She mentioned that she didn’t feel the CT was good quality and we would learn more from a bone scan and MRI. She was going to wait for the blood work up, and if that showed an infection, they would immediately start antibiotic. If not, we would wait until the next day. THE NEXT DAY. That meant we were staying over night.
I know that seems obvious, but it was that moment where I was overwhelmed with all the tests and procedures and blood and wondering how the hell my son suddenly had an oncologist when last night he had been running through a sprinkler.
I looked at the clock fully expecting it to say 9:30, it was almost 6pm. This was the longest day ever.
The food came, and HJ thought it was awesome being fed every bite from his aunt while he laid in bed. The nurses switched shifts, and HJ immediately liked his new nurse, Laura. The oncologist came back in and showed us the blood results. Everything was normal, and I could breathe a little. But, just a little.
HJ asked to go to the play room and was so excited when the nurse showed him how he could travel, by a race car. We played for a bit, and seeing HJ liven up a little and be giggle-y helped me calm down. He would be fine. He had to be fine.
We made it back to the room and said goodbye to the family. HJ wanted me to sleep in the hospital bed with him, and of course, I was willing. I snuggled up to my little boy while praying that everything would be okay. About an hour later the nurse checked on him. He stayed asleep.
At 1:45 I woke up. I was wide awake. There was no calming my anxiety. I paced the room and checked my phone. The nurse came in and out a few more times. I tried laying back down knowing my mental state would be much better if I had some rest. That just made me more anxious.
I knew HJ couldn’t have any food or drinks when he woke up, but I still didn’t know when his tests would be, and what they would be doing. I just knew it was going to be a long day.
By 5:30, I gave up on sleep and jumped in the shower. HJ got up at 6:30 and was ready to play. He showed me he could straighten his leg a little and even stood up with a little help. I prayed that was a glimmer of good things, but it did little to ease my mind.
The nurse came in and let me know that tests still hadn’t been set up yet, but she knew he would be sedated for an MRI. I watched as she moved HJ’s IV so he could ride in the car to the play room, and I had to excuse myself. I sat in the bathroom with tears flowing down my face and wondered how everything changed in the blink of an eye.
The wonderful nurse snuck in and said she would take HJ to the play room while I tried to pull myself together a bit. I got the crying under control, and called his school to let them know he would be gone for the day. His teacher’s voice wavered as she offered me encouraging words. Hearing the crack in her voice made the tears start again.
I don’t know how some people can stay so strong in these situations. I am not one of them. I wanted to be strong for my son. But I wasn’t. He was the one offering me encouragement and patting me on the back.
I remember seeing other mom’s walking the halls. They all had the same vacant expression I know I was wearing. I saw 2 other moms break down in the hall. Their tears brought mine back. I don’t know what they were going through or what news they heard. But I know that they probably felt just as helpless as I did.
Back in the room, the oncologist came to talk. She was leaning towards a diagnosis of LCH. She was quite certain it was LCH, like 90%. The other 10% was cancer. I felt weird thinking, yes, let’s hope for LCH. But she described it in such a way, it felt manageable.
Until I googled it. If you are ever in the hospital and the doctor gives you a “it might be…” scenario, NEVER google it. Promise me.
Not only did it freak me out, but NONE of the signs lined up with my son. His came on sudden, seemingly overnight. He was running one night, and the next morning, couldn’t put weight on his leg. Otherwise he felt fine. Blood levels were fine.
While I was busy panicking and most likely crying, the orthopedic team came in. When I told him what the oncologist had said, he shot back with a, “WHAT?!?! That is so rare, I don’t know why she would say that. That is not something to lean towards at all.”
He did help calm me down a bit and said the MRI would really show us what was going on.