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Our Founder, Katies Story
In 2016, we were overjoyed to finally receive our BFP—our long-awaited Big Fat Positive pregnancy test. After years of trying to conceive, it felt like a dream come true. But just one week later, our joy turned to heartbreak. I woke up bleeding.
I immediately contacted our fertility specialist, who had been guiding us on our journey to parenthood. He referred me to the fetal medicine unit for urgent testing. There, we received devastating news: the pregnancy was ectopic—it had implanted in my fallopian tube.
We returned to our doctor to discuss next steps. Given the high risk of rupture and the likelihood of recurrence, he recommended surgery to remove the pregnancy. Sadly, our private health insurance hadn’t yet rolled over to cover maternity care, so we had no choice but to seek treatment at a public hospital.
We went straight to the emergency department, armed with a letter from our doctor, along with my ultrasound and blood test results. After a brief wait, I was called through by a nurse—alone. I was told my husband couldn’t accompany me past that point and would need to remain in the waiting room. I was then led to a secondary waiting area—a stark corridor with a few chairs lined up against the wall. I sat there for hours, isolated, frightened, and mourning the loss of our first child.
Eventually, a nurse approached and asked to take more blood. When I asked why, she admitted she didn’t know. I requested she find out before proceeding. She returned to say it was to check my HCG levels—tests I had already completed earlier that day, with results included in the doctor's letter. After some back and forth, she returned again to inform me I had been misclassified, and they would now find me a bed.
Once I was placed in a hospital bed, a doctor arrived and asked why I was alone. I explained that I hadn’t been allowed to have my husband with me and that we had been separated for almost four hours. She immediately arranged for him to join me. She then confirmed the diagnosis and explained that surgery was the best course of action. However, they couldn’t guarantee whether they’d be able to save my fallopian tube or not—it would depend on what they found during surgery.
Soon after, I was wheeled to the pre-operative area, surrounded by NICU equipment—equipment meant for babies who would get to meet their mothers. It was a cruel reminder of what we were losing.
When I woke up post-surgery, I was alone again in a ward. A nurse handed me a sanitary pad and directed me to the bathroom to change—no assistance offered. I asked if they had removed my fallopian tube. She shrugged and said, “I don’t know.” I had to ask her to find out. When she returned, she confirmed that yes, my tube had been removed. Then she told me I was free to go. She asked if I needed a medical certificate; I said yes. At the nurses’ station, the doctor looked at me and said, “I hear you need a certificate. What did you have done?”
This was our first pregnancy—after 4.5 years of trying. After I was discharged, I wasn’t offered a single follow-up call, appointment, or check-in. I was left alone to grieve the loss of not just our baby and my fallopian tube, but the dreams and plans we had for our family. The emotional aftermath was devastating. The grief, guilt, and trauma pushed me into a dark place, and it took a long time to find my way out.
In 2017, after months of trying and undergoing fertility treatments with the help of a specialist, we finally received another positive pregnancy test. We were overjoyed—but cautious—waiting anxiously for the 8-week ultrasound to confirm that everything was progressing normally. Tragically, I began bleeding. Terrified and heartbroken, we learned through a series of ultrasounds that I was experiencing a missed miscarriage and would require a D&C.
This time, I went to a different hospital, letter in hand. We arrived around 2:30 p.m. on a Friday, but didn’t see a doctor until 3:30 p.m. By then, we were told that they didn't operate after 4 p.m. and I’d need to come back on Monday. They were sending me home—as if I were waiting on a parcel or something, not losing a baby we had already fallen in love with. Once again, I was left to process overwhelming grief, guilt, and confusion—alone. There was no support offered, no guidance, not even a comforting word from the healthcare professionals. It was a heartbreaking experience, made even more painful by the lack of empathy and care.
In 2021, life dealt me another devastating blow. I was a mother to a three-year-old and an eight-month-old, and I had been feeling “unwell” for some time. Despite numerous visits to doctors, no one could explain what was wrong. I was repeatedly told everything looked normal, and I started to doubt myself—wondering if it was all in my head. hen one morning, I woke up with a painfully stiff neck. Over the course of five days, I saw three different GPs. Two of them didn’t even examine my neck. They dismissed my pain as muscular and sent me home with Panadeine Forte. After finishing two boxes and feeling no better, I decided to take myself to the emergency department. It was there that a doctor finally listened. He physically examined my neck, confirmed it wasn’t just muscle-related, and ordered an ultrasound. The scan showed abnormalities in my lymph nodes, prompting a Fine Needle Aspiration (FNA). When the FNA results came back inconclusive, I underwent a core biopsy. That, too, left questions unanswered. Finally, I was advised to have a lymph node surgically removed for testing. The results revealed I had Langerhans Cell Histiocytosis (LCH)—a rare form of cancer that affects just 1 in 5 million children. In my case, it had spread to my lymph nodes, neck, tongue, tonsil area, and underarms. In November 2021, I began 12 months of chemotherapy. I went through it all while raising two very young children. It was terrifying—not just because of the diagnosis, but because it came at a time that was supposed to be joyful. We had waited so long for this chapter in our lives. But instead of soaking in the milestones, I was navigating a fog of fatigue, illness, and survival. Looking back now, I missed so much of my son’s first year. LCH doesn’t go into remission—it goes dormant. That means I live in a constant state of uncertainty, always waiting for the next wave, for the moment the cancer might return.
Fast forward to 2024—I noticed a lump in my neck that hadn’t gone away and, if anything, had slowly grown over several months. I had previously raised concerns about it but hadn’t yet undergone a PET scan. As I approached the two-year mark since completing chemotherapy, I requested a PET scan to monitor my health after my earlier cancer. The results were deeply concerning—the scan "lit up like a Christmas tree." A core biopsy suggested more testing was needed, and after further consultations, I underwent a parotidectomy, which involved removing the lump along with a large portion of my parotid gland.
DNA testing revealed a shocking diagnosis: Ewing’s Sarcoma—another rare childhood cancer, typically found in long bones, not in soft tissue like the parotid gland. This diagnosis was more serious than the previous one, and the prognosis was undeniably more frightening. With treatment options laid out, I chose the path that gave me the best chance for long-term survival. So once again, I began chemotherapy—this time with a more aggressive regimen and harsher side effects. I also had to undergo 20 fractions of radiation therapy.
