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1/21/2016 Latest post:
Rhodes "The Story" to Diagnosis
Six days ago, our lives changed forever. We heard words you never want to hear and began a journey into the grim world of battling cancer.
Our daily lives have been such a whirlwind of medical procedures, constantly changing medical personnel (each with a different role and specialty), information sessions, room changes (our 4th any time now), and most importantly, caring for and comforting Rhodes through the journey of fighting cancer.
For those of you who want to know how we arrived at this diagnosis, we offer the back-story.
Mid-December, I noticed Rhodes didn’t seem to feel well (less active than normal and wanting to be held a lot, which is very unusual). Simultaneously, he had foul-smelling breath that wasn’t improved by intense tooth brushing and mouth cleaning. My sense that he might be getting sick was affirmed when both of his other mommies, Brooke and Kathy, separately shared that he just wasn’t acting like himself. There weren’t any noticeable symptoms besides the bad breath, lethargy and clinginess that indicated what might be bothering him. Before we left town for the Christmas holiday, I decided to take him to the pediatrician for a check up. The available doctor that day was not his regular pediatrician, but he examined Rhodes and reported he looked fine. I wasn’t totally convinced, but I hoped he was right. The following ten days while we were away, Rhodes continued to seem more temperamental than normal, but he had enough good moments to make us wonder if he was just being a normal toddler who had the sniffles and was struggling with the overstimulation of moving four times, traveling by air and car, and coping with the frenetic excitement of Christmas.
After we returned to Atlanta on December 29, we hoped the structure and comfort of his normal routine would bring him back to health and contentment. Unfortunately, it did not. His runny nose turned into a bloody nose that progressed to bloody mucous, which seemed unusual and alarmed everyone who saw it. On the afternoon of January 7, I was recovering from some unexpected outpatient surgery but I became concerned enough about Rhodes’ drainage that I asked our friend Kathy to take him to the pediatrician. She examined him, saw the bloody mucous and arranged for him to see an ENT the following day (if you’ve ever tried to get in to see an ENT, you know what a feat that is). The pediatrician also put Rhodes on a week of antibiotics and sent him to have blood drawn. The following morning, Barry and I drove him to Alpharetta to see the ENT. She examined him, ordered another blood test, and suggested we allow the antibiotics to get in his system while we waited for the lab results to come back. All of the labs came back normal, so the ENT scheduled a sinus endoscopy for Wednesday, January 20. The procedure is often done in the office for older kids, but for our squirmy, feisty three-year-old, she believed some sedation would make the procedure more tolerable for him and would provide better observation.
Over the weekend of January 15, Rhodes’ difficulty breathing became a great concern for Barry and me. We made a couple of attempts to get guidance regarding our concerns and requested the endoscopy be moved up, but ran into brick walls with the ENT group. Monday morning, Barry was leaving town and my mother was here, and the three of us decided we should keep pressing for help. I called the pediatrician’s office and finally found an angel in a nurse named Beth. She suggested I take him to the ER right away and firmly communicate how concerned we were about Rhodes’ weight loss, lack of interest in eating and playing, and difficulty breathing at night. That ER visit led to a CT scan that showed a sizable mass blocking Rhodes’ sinuses and partially obstructing his mouth breathing.
Monday evening, we were transferred to the Pediatric ICU where we began days of testing to determine exactly what type of cancer Rhodes had, so we could move forward with treatment. The sound of his breathing during sleep was so loud and disturbing that Barry and I found it difficult to sleep even at the hospital. The doctors did not want to give him much pain medicine because they needed him to “work” at breathing. The biopsy provided some minimal improvement to his airway passage, but breathing concerns have been at the forefront of our minds all week. We were eager to finally commence treatment, which started yesterday, January 22, when he received his first dose of chemo.
Barry and I are hesitant to share a lot of diagnosis details because as we hear multiple times each day, every cancer is unique as is the way each individual responds to treatment. It requires every ounce of strength God provides for us to cope with the battle we face right now. We are trying to talk directly with the best medical experts we can find all over the country, and we are getting multiple opinions about the best possible treatment options for Rhodes’ specific type and location of his tumor. We have been strongly urged against doing our own “research” on the Internet, and we are glad to comply.
Thus far, Rhodes has been incredibly brave and he is holding up pretty well. Our life right now is consumed with fighting cancer, and it can be so serious and depressing. Thoughtful gestures from friends, medical staff, and even strangers make the grind so much more bearable.
We are deeply grateful to live a few miles from one of the top-rated, children’s cancer centers in the country, and we are richly blessed to have family and friends who are clamoring to help us in any way they can. Most of all, we serve a sovereign God upon whom we are relying for wisdom, strength and provision to get through every day, one day at a time. We are praying Rhodes' body will be cleansed of all cancer and restored to the state where he can reengage with his friends and begin living a long, purposeful, and cancer-free life!!!