Apr 23, 2020 Latest post:
Sep 17, 2021
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January 28, 2020 Logan noticed a golf ball sized lump on his hand. It appeared out of nowhere and it was located between his thumb and index finger. I figured it was some sort of cyst, but I immediately called the doctor and scheduled an appointment for the next day. We go see the pediatrician who says it’s probably a cyst so we will get an x-ray and send you over to the orthopedic surgeon to get it removed. That following Monday we go to the orthopedic surgeon who takes a good look at it and says I need an MRI stat. It’s rather solid and it just showed up out of nowhere with no injury. Now we are scheduled for an MRI the next day. She did a great job of not seeming alarmed but also at that moment things were starting to add up for me. I know how things go in the healthcare system. Nothing moves this fast unless they think it could be something more serious. That afternoon I get a call from the ortho office stating they want us to come in for the MRI results Wednesday which is the very next day. While I’m on my way to get Logan from school Wednesday the Ortho surgeon calls me and says I don’t want you to bring Logan. We are going to refer you to an oncologist because this mass on his hand has some concerning characteristics. She told me she would be glad to still see me if I wanted to still make the appointment that afternoon and she would answer any questions she could. I immediately pulled my car over and started crying and I was overcome with fear and what ifs. Just the thought that this could be something more serious was earth shattering. I think in that moment I really knew deep down that this was cancer. I did go ahead and meet with the ortho surgeon that afternoon and she went over the scans as best she could with us and answered our questions, but she wasn’t really able to answer THE question. In that moment you just want to know for sure is it cancer. Again things moved very quickly. The ortho doctor got us into the oncologist for a next day appointment. We went and waited and waited while he looked over all the scans and x-rays. He really didn’t offer much insight. He basically told us he couldn’t tell one way or the other from the MRI so we will need to do a biopsy. Now I’m just wanting this out of his hand stat. Whatever it is just take it out and lets move on. So now we are scheduled for a biopsy the following Tuesday at Riley Children’s Hospital in Indianapolis. We went Tuesday 2/11/20 for the biopsy and then we were sent home with no clue just to wait. The wait was awful. When I hadn’t heard from the Oncologist office Friday afternoon I decided to leave them a message because I didn’t want to wait the weekend. Valentines Day 2020 we got the call that changed our lives. Logan has cancer and it’s a rare form. It’s called Rhabdomyosarcoma. We were then referred to an oncologist at Riley who specializes in soft tissue sarcomas.
The following week we were scheduled for a PET scan and then to meet with doctor who is going to try and save our son’s life. I don’t think we even had any clue the emotions we would go through that day. When we met with the oncologist she informed us about his PET scan. Turns out there were other places that this cancer was showing up. It was located in his left armpit in the lymph nodes and also in his right pelvic bone. They didn’t see anything in the lungs and that was good but they also wanted a closer look at the lungs to make sure there was nothing really small that was missed on the PET scan. The one thing I don’t think I will ever forget about that day is when the doctor looked at Logan and I and said whatever you’re feeling right now it’s ok to feel it. Logan had been strong up until this point and then he just started to cry. All I could do was hold him and cry right along with him. In that moment we were just overcome with fear and sadness and it just wasn’t fair. The doctor needed some more information to be able to stage the cancer and to decide what treatment plan to go with. He was schedule for the chest CT to make sure lungs were clear, an MRI of the hip/pelvic bone area, and a bone marrow and lymph node biopsy. When they did the lymph node and bone marrow biopsy they also placed his chemo port. The doctor met with Cory and I after results were back from all of these scans and procedures. The chest CT still looked clear, the bone marrow biopsy came back negative, the MRI of the hip confirmed disease in the pelvic bone, and the lymph node biopsy came back positive for disease. By this time the rest of the pathology report that they had ran from the original biopsy and tumor site had come back. Logan has Alveolar Rhabdomyosarcome and he tested positive for the FOX 01 gene mutation. Placing him into an even more rare category. They staged his cancer stage 4 and gave us a very unfavorable prognosis. The doctor laid out a couple treatment plans that we had to decide on. We decided since he was as healthy as he was gonna be that we would take the more aggressive approach to fighting the cancer as long as his body could handle it. The treatment plan is 51 weeks of chemo/radiation/surgery. He started chemo Monday march 9th, 2020.