Thinking back to these early days is harder than I thought. We made it through that intensely tragic time, but looking at these pictures, I recall the moments when such innocence met shocking misery.
As far as Brooks knew, doctors were not there to help him. There is no way he could understand that. He didn’t know suffering until we stepped into Children’s Hospital. To him, doctors and nurses were torturing aliens. During those first days, my limbs were profoundly heavy as I brought my child back to the mother ship to offer him up to these intruders.
I’m not saying we were ungrateful for the care or distrusting of our physicians; we have always known we were in the most capable of hands. What I mean to emphasize is that it was so hard to be the grown up. All I wanted to do was run and hide under the covers (clutching my boys). Instead, it felt as if we were walking right into the fire. The flames bring life but they still burn like hell!
The morning of April 5, 2016 went smoothly enough. Brooks drank the pet scan contrast serum without much fuss. Crystal Light Lemonade flavor helped to peak the interest of his taste buds. He still didn’t have his port for ease of vein access so we had to go through the trouble of locating a seam the old-fashioned way. I was yet unpracticed at holding Brooks for such uncomfortable procedures. I cried along with him as the two nurses and myself wrestled him down and found a vein. Taping and bracing the tubing seemed to take an excruciatingly long time.
After this struggle, Brooks quieted down and we were taken back to our radioactive-safe waiting room. The room was dim and had a soothing bubble tube. I don’t remember how long we had to wait before beginning the PET/CT Scan. I know I was worried about the duration of the wait and how I would entertain a hungry and scared child. I was shocked when Brooks fell into a deep sleep in my arms. It was still only 9 am and so uncharacteristic of him to fall asleep with ease. I was incredibly grateful for the peaceful comfort of his sleep. I am sure it was a God-given gift.
As he slept, I sent out our first update of the day:
Praying for miracles today. Pet and scan at noon to see if cancer exists elsewhere. Our angel is asleep right now. God has given him comfort.
This message got an overwhelming 41 shares on Facebook. News of our struggle traveled wide and people prayed all over the world for Brooks!
Prior to this early morning, we had 4 anxiety-filled days at home as we awaited our final pathology. News of the specific cancer Brooks was battling had still not arrived as we began the day. As I mentioned, we thought we were fighting Ewing’s Sarcoma. We were desperately praying the cancer did not exist outside of Brooks’ facial nerve cavity.
As Ewing’s Sarcoma spreads, the cure rates dwindle significantly. The statistic that was shared with us was if this was an isolated incident, research supports a 70% cure rate. If the cancer had spread, this number drops to 30%. This is all that I knew about the cancer we thought we were fighting.
I was told to stay off the internet. I did exactly as I was told. I know from past illnesses that playing with WebMD only results in the worst case scenario diagnoses. I needed hope to breathe. I clung to it with all my might. I remained in the dark and did just what the doctors told me to do.
I am now so incredibly grateful that I did not try to arm myself with knowledge about Brooks’ condition. I would have found tales of heartbreak that do not belong to me.
The PET Scan was relatively quick and we did not have any surprises with this sedation. Brooks came to and enjoyed a cherry popsicle as we were cleared for discharge.
Later that day, we finally received news back from the laboratory which was studying Brooks’ biopsied cells. It was better than good news. IT WAS A MIRACLE!!
Here is the message I shared with our friends:
Believe in the power of prayer. Friends – We are humbled and overwhelmed with gratitude for your love, support, and most importantly, your prayers. Today, we finally received some news that may be considered positive. Although the doctors are still waiting for the final results of the pathology report, they believe that Brooks’ cancer is a Lymphoma and not Ewing’s Sarcoma. This in not yet confirmed, but they are quite confident that is the case. If it is, Brooks has a better a chance of fighting this than the original prognosis. The pet scan did reveal that the cancer is in his femurs, hip bones and right clavicle, but this is the nature of lymphoma. Brooks will have another procedure on Thursday to test his bone marrow and spinal fluid. They will also install a port for his chemotherapy, which will start immediately after. We believe Brooks’ prognosis today is because of your prayers. He will need many, many more in the coming days, weeks and months as we continue to battle this thing. From our family to yours, we thank you and ask you to keep praying for our precious little boy. With love, Amanda and Erich
This post received 42 shares! It is only when I went back to retrieve my earlier notes from my Facebook “news feed” did I notice how many people shared this message. It is quite overwhelming. I am currently straining to write through my tears because of your love.
Re-reading the message, I remember how cautious we were in our wording. We were terribly happy but so careful with our joy. We didn’t want to get our hopes up. We didn’t want to get your hopes up. WE REALLY DIDN’T WANT YOU TO STOP PRAYING!
The PET/CT Scan did reveal that Brooks’ cancer existed throughout his body. With the diagnosis of Lymphoma rather than Ewing’s Sarcoma, we were reassured that we need not worry about the extensiveness. Leukemia and Lymphoma, by their nature, dwell throughout the body. They are referred to as “liquid cancer.” This change in diagnosis dramatically increased Brooks’ likelihood for survival (as well as boosting the chances that my heart will go on with its function properly).
April 5th was a day that my faith in God grew without measure. I would need this trust in His strength because our next visit to the hospital would not be so easy.