Douglas began having mild symptoms of leg pain and fevers, and after several trips to doctor’s offices and urgent cares, I took him downtown to MUSC on January 31, 2020, where a few days later he was diagnosed with Stage 4 Neuroblastoma. This was some of the worst news a parent could receive. During the first 10 months or so, he underwent procedures for port placement and tumor biopsies, he went through four induction rounds of inpatient chemotherapy, an extensive surgery to remove his primary tumor and adrenal gland, stem cell harvesting, two more induction rounds of inpatient chemotherapy, gastric tube placement and another central line placement, two stem cell transplants, and radiation therapy to the primary tumor site. Through all this he also suffered through several bouts of intestinal infections and a fractured leg, caused by a tumor. Even before the stem cell transplants, he had a curie score of zero (the best!) and all of his scans were showing marked improvement. Following all of this therapy, there was a planned 6 rounds of inpatient immunotherapy, but only three were completed due to some vision loss and adverse effects of the immunotherapy. Still, scans continued to look great, and Douglas was thriving. He was getting his energy back, running around, doing kid things. We were becoming a normal family again--being able to actually travel outside of the Charleston. Douglas had procedures to have his feeding tube and central line removed. The kids had started a homeschool co-op once a week and Douglas decided he wanted to get into Taekwondo classes. I found a great job that I could work full-time at home. He was doing so great and was a happy little boy again.
In January of 2022, the whole family caught Covid. Douglas had very mild symptoms and only had a fever for a day. I was worried about him but thought “Awesome, his immune system has recovered!” The next week, Douglas had another fever, but was otherwise asymptomatic. The next week, he started complaining of leg pain during Taekwondo class. This was how it started in 2020: leg pain and fevers. I thought “Lord, please don’t do this to us. Please don’t let this happen to him again.” I skipped the urgent cares and doctor’s offices and took him straight to the hospital. His labs and imaging looked great! I was relieved in the moment. He continued to have daily fevers and increased leg pain. After several more trips to the hospital with no found cause of his symptoms, a second radiologist noticed the tiniest little spot on his Xray and informed his doctor. She said, “I doubt this is anything, but we’re doing to plan for some more scans next week to confirm.” After two days of imaging, I got that dreaded call from his oncologist that his cancer was back. I cried then and have been crying ever since.
He was immediately started on oral chemotherapy for relapsed neuroblastoma and had surgery to have another port put in. I was still working full time, homeschooling, and with the help of my mother and mother-in-law, juggling his regular doctor’s appointments. About 2 rounds into the new oral chemotherapy, his pain was worsening, and scans showed the chemo was not helping, and the tumors were growing. The plans were going to change. He did radiation at the two main tumor sites on this left leg and had a surgery to attempt to remove a lot of the tumor and damaged bone and replaced with a synthetic bone material and had a metal plate placed to make the bone stronger and prevent an inevitable fracture. He also had new biopsies to learn more about these tumors. This was to be followed by 6 rounds of ICE therapy: a very intense inpatient chemotherapy regimen. Although we still do occasionally get help from my mom and mother-in-law, they are out of state and have work of their own, and my husband is an active-duty service member, so my employer allowed me to cut way back on my hours to be able to be with Douglas more during his hospital stays and appointments. On average, with each round of chemo, he was inpatient for about 6 days, goes home for a few days, then returns for a neutropenic fever for about 12 days. Outside of his inpatient stays, he is typically seen in the clinic twice weekly for infusions/transfusions/labs. Needless to say, although I was able to cut back my working hours, I couldn’t maintain my work schedule and responsibilities with his treatment schedule, and I lost my job. He completed six rounds of ICE, then started oral chemotherapy. Scans were negative and his body was recovering and everything was great. Until early August of this year, I was in bed, and he came in and said “mom, I think my cancer is back. My leg is hurting like it did before”. A couple days later, imaging confirmed the cancer was back, again, and we were shuffling to figure out which treatment would be next. After consulting with doctors at Memorial Sloan Kettering, he started a low-dose chemotherapy infusion and a newer immunotherapy. He is currently working on his third round of this treatment, and so far, so good. This has been difficult for him and the family in general and he asks me “do you think there will ever be a day I don’t have to deal with cancer?” We’re going on 4 years of on and off treatment and his earliest memories are being filled with hospitals, feeling sick, and chemo. Thank you for helping me give my family a merry Christmas.
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