Apr 28, 2018 Latest post:
May 21, 2018
(Note: Friends have asked about Sophia's Go Fund Me Page. Please click on Ways to Help above to find that page. Thank you.)
Sophia found a lump in her breast and under her armpit in December 2017 and told me about it. We immediately went to her pediatrician who said, "yup, there's something there." The pediatrician sent us to Children's Hospital's Gynecology Department saying they should be able to take an ultrasound. Children's took an ultrasound of the area and said, "yup, there's something there," and they sent us to Cincinnati's Women's Breast Clinic. Sophia was seen in the Cincinnati's Breast Clinic in February of 2018. She had an ultrasound and had fluid removed and sent off for testing. The doctor said that it didn't look infected at first glance. Sophia had not had a fever or any symptoms that would make someone think she had an infection. The doctor toyed with the idea of putting her on an antibiotic but decided against it. She said she didn't want to put someone on antibiotics if they didn't need them.
We were told the lumps under her arm were normal and not to worry about those because swelling in the lymph nodes in teens was normal. We were told that the results were negative for infection and that no bacteria grew on the sample. We were told to come back in a month to see if it had grown. Sophia had noticed that it had grown after two weeks but I waited until our appointment at the end of February. By then her entire breast was as hard as a softball. The doctor took another ultrasound of the breast and some of the armpit and said she needed to take some tissue to send off as well. I remember that ultrasound because the doctor said, "ooh this sample doesn't look like the last sample." And she was right, it didn't. The first sample of fluid looked watery with some blood in it but this second one looked dark and murky and bloody. I remember complaining to my family and friends about this doctor's bedside manner because she would say things like, "I doubt it's cancer, that would make her the youngest one." Or she would say, "there are worst things than losing a breast." I should have turned and ran right there but didn't feel like I could go back to Children's because they sent me to this clinic. I assumed they sent me to the experts and they didn't specialize in breast cancer.
That sample was sent off and the doctor put Sophia on an antibiotic for two weeks hoping it would shrink the tissue. It did not. The pathologist needed a larger tissue sample so surgery was scheduled. Sophia had a mastectomy at Jewish Hospital the end of March. I remember asking the Pediatrician if she thought we could go to Children's to have the surgery because I wanted someone who specialized in kids to be involved. She advised me to see it out with these guys because they were the experts and they started this process so I should see it through. I remember the nurse registering us on the day of surgery telling us that she didn't recognize the screen she was on because they didn't get a lot of kids. Sophia went under the knife, a mass was removed as well as some tissue from another part of the same breast because even with the removal of the larger mass, her entire breast was still filled with some sort of mass. The sample was sent off to a local Pathologist and eventually sent to a clinic in the state of Wyoming for additional analysis.
The evening before Easter, Sophia came into my room saying she was dizzy and didn't feel good. I told her to get in bed with me so I could keep an eye on her. That was silly because we both just went back to sleep. She laid around all day on Easter while I conducted an Easter Scavenger Hunt for her five little sisters. She was getting worse, she had a fever that went from 102 to 103.6, 103.7...I couldn't leave ALL the kids with Sophia's older sister so I told her that when the majority of them went to sleep, we'd go to the emergency room. Around 9:00 I told Sara to watch Jocelyn who was the only one left awake and that grandma would be home from Bingo in an hour and a half but that I could not wait any longer to get her to the hospital. Once in the emergency room they sent us to Urgent Care where we sat for and hour and a half. We had arrived there at 9:30 and were called back to be seen at 11:00. By 11:15 we were back over in the ER Triage and by 12:00 she was in the ICU. Sophia went into Septic Shock and after many tests in a short amount of time, she was diagnosed with Rhabdomyosarcoma (RMS) and that is how this journey began. Sophia had to have surgery, a breast and some of her chest wall had to be removed. She has a port and has to have 42 weeks of Chemo including radiation treatments. She has a wound vac that needs to be changed three days a week. It seems we are at the hospital all the time and it's only been one month since Easter. I cannot tell you how Sophia felt but I know how I felt as her mother and it was a feeling to this day I cannot find words to describe. Sophia has been a rock though this, with a strong attitude and positive outlook. I think the doctors are shocked by how mature she is being about this whole thing. She trusts them. She trusts me. She trusts that the doctors at Children'ts know what they are doing and talking about and that they will fix her up in the end and be with her through this journey. She believes in God and the power of everyone's prayers and I am taking my queue from her and staying strong for her and her siblings and grandma. I admire her courage and faith. She is a beauty in and out and I am very proud of her.