The Fever that Changed the Journey Part Eight: The Answer
After a couple of hours we were called into the parent meeting room to meet with Dr. D, the surgeon who had just finished the biopsy. He handed us a picture of the procedure, and explained that although he didn’t have any immediate answers, neither did he find what he expected. We were left puzzled by that comment. I stared at the photo page he handed me, trying to figure out if this was a good ‘unexpected’ or a bad ‘unexpected.’
As soon as Rhyse was awake and stable we were escorted back to our room on the tenth floor. While I concentrated on comforting Rhyse who was in great pain from the three incisions, and add on circumcision we requested, nurses, doctors and surgeons flowed in and out of the room to do their evaluations and vitals. Apparently while being under the anesthesia some fluid pooled in his lungs and made it difficult for him to breathe. His chest and tummy were thrusting up and down, trying to get enough oxygen to function. The nurses were very concerned. Soon the order was given to start him on O2. Slowly his sats climbed back into the 90s.
As we have experienced in the past, Rhyse’s ability to handle pain is slim to none. With Rhyse on morphine, and then vicodin, he was slipping in and out of a drug induced stupor. As crazy as it sounds, being partially sedated with pain meds is a blessing after surgery.
Like the previous night, I went home to sleep while Jon remained at the hospital. My girls need mom just as much as my son so I’m always trying to find that balance during Rhyse’s hospitalizations.
Thursday morning I arrived to find that Rhyse’s bloods had come back with elevated liver cells, but the bone marrow aspiration was normal: two conflicting results. Why elevated liver cells? The doctors never did figure this one out.
Hearing that the bone marrow results were normal was a huge mental relief. In my mind if the bone marrow wasn’t showing early blasts, then maybe the tumor was going to be benign. At least that was my hope and my prayer.
As the mental battle for peace waged on we continued to hold tight for the big results to come in. Mental pictures of chemo infusions, more surgeries, more biopsies, a port, and more waiting were beating me over the head. “Take every thought into captivity.” My mantra. My Faith.
When I woke up Friday I was both excited and terrified to know the final results of the biopsy. The previous week’s emotions had played havoc on my outlook on life, and I needed a peak into hope. I wanted to put the word, “Neuroblastoma” away forever! I wanted to go on living with the mundane ER visits, and sickness, and complications; just not cancer! Selfish? Oh, yea. There are a few times in life where being selfish is indeed warranted.
Friday afternoon Dr. F, Rhyse’s primary hematologist walked into Rhyse’s room with a big smile. She walked up to me and hugged me and said, “it’s not cancer!” We don’t know exactly what it is or where it came from or what we are going to do medically going forward, but at least we can tell you what it’s NOT! She was so excited she asked for the Dr. S’s phone number, Rhyse’s Pediatrician, so she could personally tell her the wonderful news! When she hung up she said there were tears on the other end of the line.
Jon and I hardly knew how to act. For seven days our emotions were blasting full steam ahead down a dark, dreary, scary track and back again! You would think I would have jumped up and down with joy. But I didn’t. I found that putting my mind in reverse was harder than I anticipated. I smiled, but my mental anxiety took much longer to dissipate. I was relieved, but I found myself needing to sort out my emotions one by one before I could fully grasp what I had been told!
For the remainder of the day, and into late Saturday afternoon Rhyse was in recovery mode, and so were we!
Rhyse was released Saturday afternoon and suddenly everyday life had to begin where it left off a week earlier. If there’s such a thing as mental whiplash, that is it! Packing up and leaving the hospital with more medical trauma behind us, more medical jargon learned, physical scars, and emotional scars was once again life changing. With each new medical issue we deal we increase our foreign language that only a few speak: the language of pain and fear, joy and sorrow, blessings and victory—all wrapped up in a child with a syndrome. Maybe I could call it the Language of Noonans.
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