I need permission. Permission to celebrate this day. Permission to get weepy and emotional. Permission to look back in wonder at how the most difficult two weeks of our lives unfolded. Permission to admit that I didn’t think we would make it through that time.
3 years ago today, when you were just 2 months, 3 weeks, and 6 days old we brought you to Children’s Hospital for what we believed would be a surgery to remove neuroblastoma. Cancer. There was a mass inside of you, in your tiny chest.
It has taken me 3 years to fully process the experience, to understand how it made me feel as a mother, and to be able to grasp the small miracles that happened along the way and learn from them.
If we’re being honest, I didn’t do a great job as your mom those two weeks. I was stuck in a depression deeper than I ever thought possible and could barely take care of myself. I simply could not wrap my head around the fact that after I was torn apart and put back together again, twice, you would be taken apart too. Hope came and went. Some days I believed that everything would be OK, and other days I was convinced you would die. There wasn’t a day in those two weeks that I did not cry, and I would lie in bed each night and ask your dad “what if” questions. I was not calm, I did not process my emotions, and my “motherly instincts” hadn’t kicked in yet.
But I prayed. A lot. I told God that I wouldn’t only pray during hard times anymore, if please just this one time, everything could be OK. I realize the two gifts that this experience gave to us were a new understanding of gratitude and faith.
Grandma and I waited with you for your X-ray results to come back. You were asleep in your car seat when the door to the waiting room opened. It had taken way too long, and we had already started to get anxious. When the door opened and there were 6 people entering the room, my stomach dropped. They found a mass. It was in your chest, near your lungs, but also near your spine. I felt like time stopped and I dropped to my knees and broke down.
Grandma tried to stay calm, but we both cried so hard that we shook. I remember her telling me that I was your mom, and that I was going to have to make big decisions. I realize now that I have had quite a bit of shame about not staying optimistic, patient, and calm.
You endured a lot of tests within a short period of time. As a tiny human, there wasn’t much more that you wanted to do other than eat and sleep, and many of those tests interrupted both. We spent hours in various rooms at the hospital and many of those times you weren’t allowed to have any food. Nurses would come in and help Grandma and I do the “rock ‘n sway”.
Your first test was an MRI and you had to be given anesthesia. When you came out two nurses had to stand over your crib for almost 2 hours. They just watched you, and so did we. It was after this test that the doctors used terms like “mass”, “tumor”, “biopsy”, “cancer”, and “oncology”. Within a couple of days we had a team of doctors to meet with who would make a plan for your surgery as well as your “treatment”.
When we brought you in for a Cat Scan there was a lovely nurse who made it her life (OK, maybe day) goal to help get you to sleep so that you didn’t need to go under again. We put you in a special board and she found us a dark room and Grandma rocked and shushed for so long that you finally fell asleep. The nurse put a huge blanket over you and carried you to the machine. You slept through the entire test This made her (and our) day.
After that big win, Grandma and I decided we could stop for a beer to celebrate. On that drive, I accidentally bumped the car in front of us at a stop light (OK, full disclosure: Grandma told me to look at a picture of you that she took). We got out and the driver immediately saw the Children’s Hospital stickers on our shirts. He asked if we were coming from the hospital. Tears streamed from my eyes as I explained that you had neuroblastoma, and that you’d be operated on soon. His name was Charlie, and he used to work at the hospital with your surgeon! He spent 10 minutes talking to us about how wonderful your doctors were, and how he had great faith in Children’s Hospital.
There was that word. Faith. I had struggled with it for years. I had faith, but in what? In God, in a God that I struggled to define. This experience helped me understand what faith meant to me; and that it was born from gratitude.
Six days before your surgery I reached out to the priest that married us. Through pouring tears I told him that I felt like my world was collapsing around me, that I wanted his help in supported your dad, and that I needed to find my faith. I look back at the message I sent him and can still feel my eyes burning and shoulders heaving as I typed it. Within 4 minutes of sending the message Father Whitney called me. He asked if I was home and what our address was. He said he would come over that evening and pray with us. We called Grandma and Grandpa Lundquist and your aunts, uncles, and cousins to come over that evening and pray with us. I didn't really know what this would mean, or how to do it, but I knew I needed it.
That night, in the most perfect way, you were baptized in our living room. You were surrounded by family, and had hundreds of people praying for you and sending you loving energy. For the first time in days, I felt good. I felt hope. I felt like somehow, I had the strength to be a (good enough) mother. And I felt like I had found some faith.
“Faith is a place of mystery, where we can find the courage to believe in what we cannot see and the strength to let go of our fear of uncertainty.” –Brené Brown
In between all of your tests and your surgery, Grandma suggested we start a gratitude list. We furiously scribbled big things, little things, and everything in between down to be grateful for. I carried this crumbled paper with me everyday. I credit this experience to helping me understand that gratitude is a practice- with action steps- and not just an attitude.
Each day our eyes and ears were open to all of the little things that could be right with the world. The nurse who brought us graham crackers, my brand new Peps friends who started us a meal train, the fact that you pooped, the women we met whose daughter’s cancer treatment was cut in half because she was doing so well. We scribbled all of it down. And when our minds went haywire, we took out the sheet and took turns reading all of the things out loud.
“There is no joy without gratitude.” –Brené Brown
Your surgery was supposed to take 4-7 hours. The recovery would be at least a week in the hospital, followed by whatever other treatments you would need. One day just before your surgery, when it was particularly hard to calm you, I stepped outside of our hospital room and fell apart. I was sure that I didn't have what it took to go through whatever was ahead of us. The nurse who helped us earlier hugged me for a long time. She told me that it was very likely that I had a long road ahead of me, and that I needed to be there for you. I had everything I needed to be a good mother, I just had to get past the fear.
We were in a tiny glass room waiting for the nurses to bring you back into surgey. That morning friends and family texted and sent messages, wishing you well, praying and sending hope. Charlie, the man whose car I hit, sent me a text to tell us that he was praying for you, and that he had faith. We all took turns rocking you. We tried to smile through tears. When the nurse finally came to take you back I can remember handing you over to him. You looked so tiny in his arms, and he walked away for what felt like forever.
Just short of two hours into surgery we got paged. The nurse at the nurse’s station told us that surgery was over. I was hysterical and kept shouting that it was supposed to take much longer. The nurse dialed into the operating room and handed me the phone. The operating room nurse said, “Miss Jankus, surgery went well. There was no need for a bone marrow biopsy.” I knew immediately that this meant that you did not have cancer. I didn't know how, or why, or what it meant, but I felt relieved and could hear the nurse smile through the phone.
The doctor came into the tiny room we waited in and had images of what was called a pulmonary sequestration. You tried to grow a third lung, and that mass showed up on your X-ray. He was elated; we sat in that room and cried tears of joy. The surgeons were able to remove this lobe of lung tissue with no issues and said that you can grow into a perfectly healthy boy.
We will practice gratitude together every day. We will remind each other of the big things and the little things that we have to be grateful for. We will share this gratitude with others, because I think I’ve learned that gratitude is contagious. October 30 is a special day, a day to recognize and remember your strength and our blessings.
“Spirituality is recognizing and celebrating that we are all inextricably connected to each other by a power greater than all of us, and that our connection to that power and to one another is grounded in love and compassion. Practicing spirituality brings a sense of perspective, meaning, and purpose to our lives.” –Brené Brown