I am cataloging the memories and experiences from our first year of Brooks’ battle with cancer. I hope our struggles, endeavors, surrenders and victories may give hope to other families fighting their own battles. I also am interested to see what recalling these moments will bring out in me. There was so much emotion behind the words of many simple messages on Facebook. I have not had the wherewithal to replay these scenes until now. Remembering the pain of these moments is tragic yet touching for my soul. Sharing my thoughts now is healing. I am putting words to my emotions, not to prolong the suffering but to release myself from it.
TODAY – March 22, 2017
Looking back on “diagnosis day” almost a year later, I can see how very protected we have been all along. From the way the lymphoma initially present itself, to the way our hearts were guarded by shock, to the way God spoke loudly telling us to LEAN on our friends; I believe, all of this and SO MUCH MORE were divinely influenced.
Cancer rears its hideous head in so many ways. In young people, specifically those who can’t explain how they feel, diagnosis can be exceptionally difficult. I still do not completely understand the anatomical and physiological development of Brooks’ cancer. I will explain more of what I have learned in future blogs. For now, I will say that Brooks’ lymphoma began growing in an uncommon space… It grew from a lymph node right beside a facial nerve, in a confined area. As the cancer began to grow, pressure on this nerve caused half of his face to become paralyzed.
We are told that Brooks’ cancer spread quickly throughout his body. We now know that lymphoma can be very painful as it grows in the bone marrow. We knew nothing of Brooks’ discomfort before diagnosis. We thought he was having teething pain… I thought he was sensitive. Little did I know how incredibly tough he was. He barely complained (especially not during the day) of the pain he most certainly was experiencing in his hip, clavicle and thigh bones.
The doctors say it would not have taken much longer for other symptoms to develop had the cancer not presented itself with this initial paralysis. However, since it grew in such a small and obvious area, Brooks was spared any additional weeks of suffering. For that we are grateful.
Those first days brought meaning to the words heartache and despair. Still, we were shielded from the full-blown realization of what was happening by astonishment and doubt. Had shock and disbelief not been my armor, I surely would have been incapacitated by the grief. My mind could not fully grasp the tragedy that was happening. I walked through those days in a haze. I believe God guided me in this trance so that I could function properly enough to keep breathing.
As I explained in my last post, the MRI on March 30th revealed that Brooks’ facial paralysis was caused by a mass of some kind pushing on the facial nerve. The doctors did not (could not) come out and say it was cancer. They suspected that it was. There was still the possibility that it was merely an infection of some sort. Further study of the mass was necessary so a biopsy was scheduled for March 31st. While I couldn’t sleep or eat, I hung onto the hope that it was simply a strange infection, praying for this with all my might.
Brooks and I spent our first endless night in the hospital after the initial MRI and before the biopsy. I did my best to comfort Brooks in this incredibly new and scary environment. I could swear that first 24 hours we were in the hospital actually lasted a week! Erich had to go home to care for Max. The next morning, the 31st, Erich took Max to school and then went on to pick his mom up from the airport. (She had flown out from Park City to our aid.)
Brooks’ biopsy was scheduled for mid-morning (Wednesday the 31st). They kept him on intravenous fluids so he was not too fussy from hunger. He mostly was just afraid. We were fused together tightly until I placed him on the operating table. During the surgery, I had a couple hours with which to do nothing but worry. I hadn’t eaten since the previous morning. I went to the cafeteria. Eating seemed excessive and frivolous in the face of our tragedy, yet I knew my body needed fuel. I grabbed a slice of pizza and went to pay for it. I got in line and was either currently crying or showed signs that I had spent the night doing just that. The woman who worked at the check-out counter noticed my distress. She came around from her seat and gave me the biggest hug. I lost it again right there and shook in her arms. Another woman, who was some kind of doctor at Children’s came over to us, knowing nothing of my story or situation she said, “No matter what, there are advancements in medicine made everyday. Children’s hospital is on the cutting edge of all cures.”
I held onto the comforts of these strangers and gathered myself. I went to look out the windows of the cafeteria and eat my pizza. I picked off a piece of sausage and put it in my mouth. I chewed but couldn’t swallow. There is something about fear and grief that makes your body shut down. Eating was not a luxury my mind would allow. I threw my pizza away uneaten and walked out of the cafeteria.
Just as I walked out of the doors, my dear friend, Barbara, walked right into my line of sight. Stars aligned as she had a small break from work where she was able to escape and come to offer support. Her timing was another blessed moment.
We walked back to the waiting room arm in arm. She gave me a bracelet that bore the inscription, “courage.” I clasped Barbara and fiddled with the bracelet nervously as we waited for news about Brooks. Erich was still not back from picking up his mom by the time the surgery ended and the doctor came to deliver his preliminary findings.
Barbara came into a consultation room with me. We sat hand-in-hand as I listened to the doctor speak in another language. I was grateful that I had Barbara to rely on to retain his words. All I heard was “small, round, aggressive blue-cell cancer.” The initial suggestion was that Brooks had Ewing’s Sarcoma. The final pathology would take a week or so to conduct.
We were told that with it, Ewing’s Sarcoma carries a 70% survival rate if it hadn’t spread. If the cancer had spread, the survival rate dwindles to 30%. I knew nothing of cancers at this point in my life and was foolish enough to hope that it was Ewing’s Sarcoma.
Erich did make it back to the hospital prior to Brooks waking up from his surgery. We embraced and tried, without success, to find comfort in one another. Barbara slipped out. I am forever grateful for her presence during those crucial moments. Below is the message I sent out over Facebook asking our friends for their love just after the biopsy.
“Please pray for our boy. He was just diagnosed with a malignant tumor.”
I don’t know why we had to spend another night in the hospital…I can’t remember. Like I said, there was a haze to my consciousness. Perhaps it was to make sure Brooks healed from the surgery well enough. I can’t think of another reason. Erich stayed long into the evening. (Erich’s mom was taking care of Max, making sure he didn’t miss us too terribly.) Erich, Brooks and I ordered pizza and tried to smile. We went to the play room and did our best to make it all seem normal and okay for Brooks. It was at this moment when I made my first unnatural Facebook post. Part of me wanted to be self-sufficient, to try to be strong all on my own. God had other plans for me. I listened to Him this time. I had an overpowering impulse to let others in and allow their embraces. I owe this compulsion to a higher power guiding my heart away from pride. (Below is the second of two posts on Facebook from the day. I remember writing it trying to portray a more positive attitude than what truly existed.)
We are so thankful for our supportive friends and family. This is such an overwhelmingly scary time for our little family. Today has been filled with terrible desperation and many heart-wrenching moments but we are not alone in this. Thank you all for expressing your sympathy and willingness to help. We are going to need it and we are going to take you up on your offers!
-March 31, 2016
The next day we were sent home to prepare for the next steps of our treatment. The question that weighed heavily on our hearts was, “What beast exactly are we facing?”
We came home from the hospital on April 1st. It was a gorgeous, warm and sunny spring day. My dad had flown in from California to be with us. I remember the sun seemed so bright that day. It was so wonderful to have both Erich’s mom and my dad in town. Our porch was filled with love. The boys were playing in the grass loving the attention from their grands. The day would have been perfect…
My heart was so tense and full of fear. Erich and I both were eager to begin treatment. We looked at Brooks and imagined the cancer cells rapidly dividing, taking over his little body. Half of his face was still paralyzed; you couldn’t look at him without considering his future. He had stitches running down the back of his right ear from the biopsy. It looked as if they sliced the ear right off and then stitched it back in place. Still, Brooks was so happy to be home. He was blissfully unaware. Max was also so happy. For their obliviousness I am grateful.
At this point in my life, I was still an amateur at sharing my emotions candidly on Facebook. I was just learning how to ask for help. We were being carried through all of this, but still, I felt so alone in the first days and weeks of our journey. Only when I physically held onto Brooks did I feel somewhat at ease. When he was away from me, I felt out of control. I had not yet realized God’s firm grasp. I only had an inkling of trust. That would change as well as so much else about me.