The Fever that Changed the Journey Part Five: Cancer Certainty
In a very kind, compassionate voice she relayed the news. The CT scan had revealed a large, long tumor along his spine and sympathetic nervous system: “homogenous but abnormal posterior mediastinal soft tissue density.” We were to be admitted to the 7th floor for the night and begin the day with an MRI, more blood tests, and a urine catch. “Don’t worry until you have to” were her words. Yea, ok. She slipped out the door and tears slipped out of my eyes…I was too tired to think clearly, or keep my wits about me. It was 1130pm and my emotions were already worn to the bone. I was alone and tired and I had no resistance to fear.
When the doctor walked out of the room I melted. I was suddenly thrust back to the day Rhyse was born, October 17th, 2011 when an attending doctor told me Rhyse was “probably terminal.” I never allowed myself to go back there emotionally, nor did I entertain the idea that I would once again be looking at the word, “terminal.” Of course I didn’t have any information at this point, but no one was being overly positive. I called my husband, just like 20 months prior, and told him the news. I can’t speak for him, but for me it was unbelievably difficult to comprehend the situation.
In today’s world any words that even come close to relating to cancer are terrifying: mass, foreign body, tumor, and the like. When I say my entire body was trembling from the inside out, I am not exaggerating. It was all I could do to keep my hands still enough to function normally. I mentally fought against every thought that would take me down the road to the death of my son. I have been through just enough in my life to know that there is great wisdom in, “take every thought captive” found in scripture. If I allowed myself to venture down the wrong mental path, I would not have been able to withstand the stress. I had to force myself to wait for all tests to come back and take the information one piece at a time. I would be lying if I said I wasn’t overwhelmed off and on throughout those first few days of blood tests, MRIs, and urine tests. But I did my best to live moment by moment, hanging onto my Faith, my family, and all the encouragement I received from the RAS family.
At 2am Rhyse was finally admitted to the seventh floor. I have no idea what takes hours to get admitted to a room: the wait was impossible. When at last Rhyse was put into his mammoth size crib, and I had the overly firm, orange love seat with geometric shapes pulled out to a bed I literally passed out in exhaustion. Not long after getting into the room Rhyse had IV number 9 put in: I didn’t hear a thing.
The morning is a blur. I remember finding out that the MRI was scheduled for 11am, and several doctors, nurses and hematology specialists coming and going throughout the day. We were once again in a waiting pattern and nothing could hurry the process along.
As I stared out the floor to ceiling windows at the city below, an all too familiar sight, I felt like I had been swept into a place where a time continuum didn’t exsit. My entire life was now encapsulated into one little hospital room. What transpired, what information I would be given, what outcomes there were—all occurred in one small space, in one small moment in time.
Thursday was spent holding Rhyse through raising temperatures, discomfort, and more waiting. When my husband asked one of the Hem/Onc doctors if she was suspicious about what they might find, she said, “yes.” He has JMML and there’s not much doubt he has developed Neuroblastoma. But at this point all we knew is an MRI would confirm the tumor and give the Tumor Board something tangible to analyze. The MRI doesn’t diagnose, it just gives a road map for further tests and an operation.
Late Friday afternoon two Hematology doctors arrived with the report from the Tumor Board meeting that had met early that morning. Both doctors are kind, caring, truly compassionate people. Helen Devos Children’s 10th floor hematology department never ceases to amaze me with their mix of professionalism and humanness. I love them all.
When the two doctors walked in the room Jon and I were standing next to Rhyse’s crib. My insides had not yet calmed down from the initial shock two days earlier, and fear was getting its grip on my heart. As the hematologists calmly gave their report the room suddenly started turning black, sweat appeared out of nowhere and I felt myself starting to collapse. Fortunately I was standing in front of the crazy, modern patterned rocker with the footstool that’s nearly impossible to put down. I just bent my knees and plopped. One of the hematologists noticed I didn’t look so good and asked if I was ok. Choking back tears I said, “We’ve just gone through so much. I wasn’t prepared for another emotional upheaval.” Truth be told I am never prepared, but being blind-sided by this tumor was almost more than I could bear. We had no idea this year would be more difficult than his first year.
As the doctors began unfolding their plan for a biopsy, 2 bone marrow aspirations, and testing his urine for catecholamine’s I could barely soak it all in. Through their explanation of spinal cancer, and encouragement despite circumstances I was still completely overwhelmed by the whole scenario. So many thoughts raced through my mind. The worst case scenarios always rear their ugly heads first and are the hardest to battle. My most pronounced fear was losing Rhyse and having two little girls (sisters) broken inside. Rhyse and his sisters have an unusually tight bond. No doubt from all the trauma and separations and hospitalizations. My three kids are happiest when they are all together in one room: I was terrified for my girls. I have always battled anxiety, and twice in my life it struck with a vengeance. But through those two difficult times I learned some valuable lessons: one, the mind is a powerful tool against anxiety and two, without the Lord I have no power at all. And so as fear and anxiety constantly beat at my door, I battled back. Sometimes they won, sometimes I won.
Pictures of all the babies in the RAS family that didn’t make it (on FB) kept passing through my mind. Would I lose my baby too? I remember one of the phases I went through in the first three months of Rhyse’s life. Rhyse was born with thrombocytopenia so he required near daily platelet transfusions. I spent long hours talking with moms and dads and grandpas and grandmas whose kids had cancer. In that time I experienced guilt. I don’t understand why. I felt guilty that Rhyse was not as “bad” as a child with cancer. It is not that I wanted Rhyse to have cancer: I just can’t explain where the emotion came from. It’s completely irrational. But there I was, facing the reality that now I too might be one of those moms —forced to live in that black place of unknown, whose child is given some imperceptible percentage chance of surviving.
On Friday, three days after arriving in the ER, Rhyse’s doctors agreed we should go home and come back the day after Memorial Day (three days later) to begin the array of testing. Packing up and leaving was not without emotion. Usually leaving the hospital is a momentous sigh of relief, not unlike escaping some sort of mental prison. But this time it was just more time to wait and pray and believe—regardless of what my emotions were screaming.
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