In the summer of 2013, I found a lump in my breast. Having a sister and mother who have both had breast cancer in the last 5 years, I immediately went to an appropriate doctor. After a biopsy, it was determined that it was an intraductal papilloma, which was considered “pre-cancer” and needed to come out within the next few months.
Life got considerably crazy at that point. I have triplet 3 year-old boys (identical twins and fraternal) and a 13 year-old step-daughter. The boys had just turned 2 years old in summer of 2013, and Edison, our son who has severe cerebral palsy, was becoming incredibly skinny. REALLY skinny. He wasn’t eating very well. Borderline “failure to thrive”. In September 2013, he had surgery for a g-tube placement—where he gets the majority of his food through a tube (with a pump). He got sick and hospitalized following surgery, and we were back and forth and in and out of Primary Children’s Hospital.
Edison’s twin, George, was also having troubles. Head-banging, hitting me, biting me, and other violent behaviors. I ended up with several black eyes, and Kelly joked that they would arrest him for domestic violence. Every time I took George out in public he would have a melt-down and beat me up. He was delayed in his speech and continually walked on his tippy-toes. When he did speak, he recited dialogues of Thomas the Train using words far beyond his comprehension. Super cute, but I knew something was wrong.
Because George perpetually walked on his toes, I took him to Edison’s CP doctor thinking that he might have a mild case of cerebral palsy. George had tight Achilles, but he didn’t need braces. I researched and researched and came to my own conclusion that George was probably Autistic. I clearly remember sitting on the floor at Barnes and Noble with my boys running around and screaming while I had tears streaming down my face. I knew then he was Autistic. It all fit.
Next I took him to Edison’s speech therapist who confirmed my fears—he showed all the signs of Autism in his speech. Echolalia, repetitive speech, volume control problems, and robotic patterns of speech. In April, George was diagnosed with Autism Spectrum Disorder.
So now, Spring of 2014, I was involved in Edison’s speech therapy, physical therapy, occupational therapy, botox and phenol injections, and now ABA therapy for George (10+ hours a week). Life was incredibly stressful and busy. Plus special needs pre-school for George and Edison, and regular pre-school for Parker. 3 different schools, 3 different times. And my dad who had been suffering from dementia passed away from heart failure in March 2014.
In June 2014, my husband noticed bruising on my left breast. Because of Edison’s spastic quadriplegia, I am constantly hit with his head—with a lot of force. I felt my breast and there was a small lump about the size of a quarter. I just assumed it was from Edison hitting my breast. I decided to call my surgeon and finally get my papilloma removed and also have him look at my new lump.
When I saw my doctor, he felt the new lump and determined it was a hematoma, and that I should let it resolve on its own.
Again, life got crazy. Seeing that George and Edison are identical, I started realizing that Edison was showing signs of Autism as well—I just assumed it was his cerebral palsy. He is non-verbal and unable to stand, crawl, or sit, so his Autism traits were masked by his disabilities. He got a diagnosis of ASD, and the next week he started having seizures. His first seizure was in September, and we were rushed to the ER in an ambulance (a lot of excitement on our street!). After several grand mal seizures and different doses of medication, we finally got his seizures under control.
My second lump—the “hematoma”—was getting bigger by now. In October 2014, I got an ultrasound and the radiologist called it a “complex cyst, probably benign”. No biopsy. No other tests—just wait and see if it will resolve by itself. It was the size of a cherry tomato by now.
In November, I had a lumpectomy with the papilloma removed and the “hematoma” drained of blood to see if that would help it resolve. By December it had grown even bigger. I went to the doctor again to have it drained, and by January it was huge. Bigger than a golf ball, and it was protruding through my bras and shirts. It hurt when I picked up Edison, and bras were uncomfortable. My husband and I joked that I had a 3rd breast, because it was so big. It had been growing since June 2014……. And misdiagnosed.
Finally, I called my surgeon and said I wanted it out. Elective surgery to remove an uncomfortable tomato-sized “hematoma”. On January 29th, I had a lumpectomy to remove the “hematoma”. While I was recovering, the doctor came out and told Kelly that it was cancer—that I was a “good candidate for a double reconstructive mastectomy” because of my skin and age. We went from a hematoma to a double mastectomy!
Within a week, I saw an Oncologist and breast surgeon, and 2 weeks from my surgery I am on Chemo. Double mastectomy after chemo, then most likely chemo again. No hair, no breasts, and possibly no ovaries as well. A simple hematoma, wrong.
We were already struggling with mounting medical bills from NICU stays for all 3 boys, surgeries, and hours upon hours of physical therapy, speech therapy, ABA therapy for both boys, and occupational therapy. We have wheelchairs, gait trainers, nebulizers, braces and standers. Our lives were already very emotionally difficult, but we kept positive and took one day at a time. We were planning on raising money for a house remodel to accommodate Edison’s wheelchair—an elevator for him to get to his bedroom downstairs and a lift in the garage. All of that is on hold, because we now have to find money to pay for my chemo and surgeries. Our insurance is ridiculous in covering things—we are already going through the disability law center to help with Edison’s therapies and surgeries, which are sometimes NOT covered by our insurance.
We are just your average people—simple and normal (if there is such a thing!), but we are fighting extraordinary battles. We will survive, I know, but we need your help. Please keep us in your prayers. Life is still beautiful despite the scars.
My original diagnosis was triple negative, poorly differentiated (grade 3) ductal carcinoma.
As of February 24 (and additional testing from Mayo Clinic), it is now double negative, HER2 positive, poorly differentiated (grade 3) invasive ductal carcinoma.
On March 17, learned I was BRCA2+ through genetic testing.
DonationsSee top donations
- Kendra Van Horssen
- Leslie Dixon
- Shelly Leany
- Kris Schneiter
- Elisabeth P
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more