January 26, 2018.
“They have a bed ready for you in room 4406. That’s going to be up on the fourth floor, off the elevators to your left, on the cancer transplant unit”. The cancer transplant unit. The cancer unit. CANCER. I stared back at the registration clerk blankly. Thoughts rushed through my head in a panicked & disorganized manner, but no words left my mouth. I felt paralyzed in that admitting chair. We were told we needed to bring Indy in for a blood transfusion- nothing was said about cancer. “Do you need me to show you where that is?” She asked. “No…. I know where it is”. I stood up and turned to see B lovingly snuggling Indy in her blanket. Her sweet, ever so swollen eyes peering up at me through the opening of that blanket. Tears began to flow as she locked eyes with mine. “Be strong for her Terah” I thought to myself. B smiled at me warmly and said, “It’s okay Momma. Come what may… we will be okay.”
We seemed to be moving in slow motion as we walked from the elevator to the doors of that unit. My life was caving in on me, my surroundings felt surreal. My body was on auto-pilot. I was walking- yet paralyzed with shock. My mind was moving at a million thoughts per second, all while being stuck on that one saving thought- “this can’t be happening. This isn’t really happening”.
We rounded the corner to the unit. Written in large letters down the side of the door were the words “Cancer-Transplant”. The heaviness in my chest was unbearable. As those double doors opened to welcome us in, tears began to silently stream down my face. My mind wanted to turn and run but my body proceeded forward. Each step drawing me deeper into the quicksand, my body weighing a thousand pounds.
We walked onto the unit where I had been many times before, as a nurse working at this very hospital. This was the place that broke my heart each time I had to deliver a sick child to their awaited bed. This was the place that struck me with fear and the deepest longing to “please never end up here”. This was the place I tried to avoid- the place I wish didn’t exist. This was the place that somehow, I was now taking my own precious daughter. “This can’t be really happening”.
We were welcomed to room 4406 with sweet smiles and “Welcome Indy!” written in big letters on the white board. This was the attempt to lighten the blow- to show us warmth & love, to help us see that this was soon to be our second family. In that excruciating moment however, I wanted anything but to feel welcomed on a cancer unit. I did not want to feel comfortable here. Ever. “Don’t act happy to me. Don’t write her name on the board. We aren’t here to stay… don’t try and get to know us. Not us.” My jumbled thoughts bounced around in a sea of denial, actively trying to convince myself of what this was not. But inside, I knew.
We waited for the doctor for what felt like an eternity, however I think he arrived pretty quickly after us. He walked in wearing an over sized bow-tie and the biggest smile. His voice very animated and somewhat goofy, exactly what you would imagine for a children’s cancer unit. “A true modern-day Patch Adams” B later said. This was so surreal. He asked if we knew why were there. “We knew she needed a blood transfusion…” We explained Indy’s symptoms and the synopsis of the past 2 months. He nodded his head as we talked as if he already knew. He pulled out her lab results and began to tell us why we were there. “She does need a blood transfusion. And also platelets. And her immune system is very weak, her markers are very low. These lab results tell us that Indy has Leukemia.”
There it was, the bomb I knew was coming but hoped wasn’t. The life-altering, soul shattering moment when someone tells you your child has cancer. I held Indy tightly in my arms. I stared down at her through blurry tears, unable to look up. “Please let this be a mistake, please God don’t let this happen”. I muttered with an exhausted breath- “Are you sure?” “Well, a bone marrow biopsy tomorrow morning will confirm it, but we are pretty confident and sure.”
The pain. The overwhelming, indescribable, unforgettable pain. There was only one experience in my life that rivaled the hurt of this moment. It was my first awakening- the night of Indy’s birth. I thought back to that night and the agony I felt about having a child with Down syndrome. I thought about how I wished her away that night, because she wasn’t what I thought I wanted. I felt an intense and agonizing guilt. “I’m so sorry, I want her so badly… please don’t take her away from me. Please let me keep her. I will never be sad about who she is again- I love her- please let me keep her”. I begged and begged and begged in my heart as I sobbed. As I write this story, this is the part that still strikes deep pain. That guilt I felt as I lived this night, while thinking back to the first night. It hurt so bad. In my emotional thinking I wondered if I brought this fate upon us because of my thoughts and feelings the night she was born. I wanted to go back in time and take away all sadness and fear about Down syndrome. I wanted God, B, myself, and Indy to all know that I wouldn’t change a thing about her. That I was sorry I was sad. That if God would let me keep her I would never let myself be sad about Down syndrome again. I vowed to celebrate her life every day, for as long as I got to have her. I was trying to make a deal with God. I hoped that He was listening. “Please… I’m so sorry”. Pleading, aching, longing.
The second longest night of our lives. I can’t remember if either of us slept, B and I. I held Indy and I stared at her beautiful and sadly swollen face. I sang to her while I nursed her, trying to help her feel safe and loved as she received blood. I wondered if she was scared. I sang her one of our favorites- “you are my sunshine”. As I got to the last verse I could no longer sing. Tears stopped my voice as I thought about the words. “You’ll never know dear, how much I love you. Please don’t take my sunshine away”. Please don’t take my sunshine away.
B put his arm around me as he whispered, “Be strong mama. We are going to be ok”. B is always the strong one. But even he had his moment expressing his deep sadness on this night. My heart broke as he said with a shaky voice and tear filled eyes- “Indy is God’s daughter first, and our daughter second. If he needs to take her home I will trust Him. I hope He doens’t- but if He does we will be ok T”.
The following morning we were taken to the O.R. for a bone marrow biopsy. We handed our beautiful girl over to the hands of a stranger who promised he would take care of her. Exhaustion had over-run my emotions. All I had left was surrender. Just as we handed her over to that anesthesiologist, we were handing her over to God. It was in His hands now- and I’ve come to realize that it always was.
We waited for results from her bone marrow biopsy with that same feeling of surrender. In my heart I had known for a while that Indy had leukemia. She was showing all the signs I was trained to recognize as a nurse- fatigue, regression in development, petechia, frequent sicknesses, and not wanting to bear weight on her legs. I had been living in a space of hopeful denial for some time. That denial continued, after our doctor came in and told us her bone marrow biopsy was negative for leukemic cells. Tears of joy and confusion flooded me. He let us celebrate in that victory but also tried to keep us warned, that a culture of her bone marrow may show different results- there was a chance this was Myelodysplastic syndrome, a cancer that manifests in children with Down syndrome. It is a form of leukemia for a child with down syndrome. “But don’t worry about that right now, we will let you know for sure in a few days. Hopefully this has all been caused by a viral infection”. We were hoping so hard.
As we left the cancer unit that day I was filled with so much relief and gratitude. It was like we escaped the dooming fate that everyone else on the unit was living. My heart ached for them while it rejoiced for us- we were going home. No leukemia. At least today. Indy had perked up a lot after receiving her blood and platelet transfusion. She was all smiles, and so were we. HOME.
Three days later, on January 30th, we received a call from our new Doctor. The bone marrow culture was back. “Remember how we briefly talked about Myelodysplastic syndrome? Unfortunately Indy’s culture came back positive for dysplastic cells. As we discussed, this is like Acute myeloid leukemia for a child with down syndrome. We would like to have you come see us in clinic so we can discuss this more and go over a treatment plan”.
My soul, and my world, were completely and entirely shattered by that phone call. You never think it will be you. My baby girl had cancer.
We got the call at 6pm. I will never forget that night- the call that I answered with my heart pounding, the conversation that went the way I prayed so hard it wouldn’t, the pain that came full circle from the night we were first admitted. I tried to hold myself together until we put Indy to bed. I snuggled her extra tight as I nursed her to sleep, while I silently wept, and prayed for God to heal her. I love her, please let me keep her. I said it over and over.
B and I had a good conversation that night. He calmed me down the way he always does. He helped me to see the positive. He helped me to feel optimistic in whatever path Heavenly Father was leading us down. We prayed together and made a commitment to face this trial head on- accepting the will of the Lord no matter what that may be. B told me that he had an image come to his mind a couple days earlier of a bald & happy little girl walking through the halls of the cancer unit, in a purple walker, with an IV pole being toted along side her. I cried, because I had the same experience. I saw it- we both did. It almost felt like this was meant to be. But that didn’t make me accept it any easier.
At 1 am I awoke, buried in fear and anguish. I went into Indy’s room. I stared at her while she slept. My pleading continued as I hit my knees. I don’t know how long I stayed there- but eventually B was at my side and helping me to my feet, because I could hardly stand on my own. It was then that I had an utter & absolute break down.
I fell into his arms, my body paralyzed with pain. I couldn’t move and I couldn’t breathe. I felt like my body was being crushed under a thousand pounds. I was crying so hard I couldn’t speak- even my sobs were silent. I was suffocating in sadness. Emotional pain has never FELT so painful. I felt it in every part of my being.
B took me to the bathroom and helped me down to the floor. I started dry heaving. My voice came through to my sobbing, and then it almost turned to yelling. “This isn’t fair, why Indy- WHY INDY? Why us, now, after everything we have already been through? Its not fair B, its not fair”. I went on and on. The sadness, pain, and fear was all coming out. “This is my worst nightmare- this is one of my biggest fears coming true- God is cruel. Why would he do this to me. I can’t lose her B, I can’t do life without her. We waited so long for her, I just want to keep her”. It was excruciating and unbearable. I write through tears as I relive this night and the pain that was present. I have never experienced a time so crushing. I was entirely broken and felt that I would never be ok again. But the sun always rises on our darkest nights, and it rose on mine. Sometimes we just need to be willing to see the light peering through the clouds.
We had 3 weeks at home after that first night. In those 3 weeks we were able to get Indy much stronger and healthier than she had been. She gained back the 2 pounds she had lost in the months prior. She was eating well and had better energy. Certain people were placed on our path that were instrumental in helping us during this time. I saw the light. I felt prompted to seek guidance from various healthcare providers in the alternative medicine world, and through that we got Indy on a new regimen of herbs, supplements, and foods that were really helping her. I wanted to do everything in my power to help her heal, so I did. I spent hours researching, learning, and seeking guidance. I was hoping that Indy’s healing could come without chemotherapy. I had deeply feared chemotherapy since the first time I walked on a pediatric cancer unit as a nursing student. Ultimately however, we felt very prompted to proceed with chemotherapy, and found that a combination of both conventional + alternative medicine was going to suite Indy very well. My prayers continuously shifted, and as I sought to align my will with Gods, miracles came.
I think back to that first night we were admitted for a blood transfusion and how fragile she was. She was so very ill. If her test had come back positive for leukemia on that initial biopsy, they would have wanted to start chemotherapy immediately- that day. I feel so grateful that we were given those 3 weeks at home to strengthen her and prepare her little body for the harsh treatments of chemotherapy. When we finally went in to get started, she was strong and ready. She handled those chemotherapy treatments incredibly well with hardly any side effects. It is no doubt that God’s hands were all over this- every part of it.
The sun came and went many times during the next 7 months. At times I couldn’t see the light. At other times the light illuminated every part of me and this experience we were living. We were able to find joy in our circumstances. We made best friends out of our nurses, made the hospital our personal playground, and enjoyed the intimate time we had as a family in our 4th floor suite in the hotel cancer unit. There was not a day that passed where Indy didn’t laugh, and make us laugh too. The light that shines so brightly within her got us through every challenging time as we walked this road together.
There was nothing easy about what we had to endure. It was the most difficult & painful thing we have ever lived. But as B and I watched our amazing little girl walk up and down the halls of the cancer unit, in her bright purple walker, with an IV pole being toted beside her- smiling & squealing, brightening the day of everyone who saw her- we knew.
This was it… Awake my soul.