Day 4 Breast Cancer awareness challenge
I remember watching helplessly as our youngest grew increasingly ill with some mysterious affliction (as yet undiagnosed) for almost a year. I knocked down every door in town from one doctor to the next, each looking her over and giving a general and vague pronouncement about what might be going on. Each giving us a bandaid treatment and passing us off to another specialist. She was finally diagnosed with an autoimmune disease that causes the largest organ in her body, her skin, to attack her.
Still it spread. Inside her young body her joints were aching, inflamed and untouched by the topical medications being doled out to us. By Christmas that year her body was over 70% covered, an outward sign that this child was very sick inside. No one would see her. I frantically called around and was told by each of the doctors and specialists we were taking her to that there was nothing more they could do, and suggested we take her to specialists in Worcester. That specialist in Worcester? Not available even for an emergency appointment for two more months. TWO MONTHS. I was angry, speechless and on the verge of a full on crazed mamma bear melt down, so helpless and mute with rage at the disease racing through my child’s body, and the utter lack of available and qualified medical care for when you find yourself throwing rocks at a giant.
My father and I locked our heads together and began to frantically research the best places to take her. It was the middle of the night when a text came through from him with a link to ground breaking treatments for our situation at Tufts. I followed the link on my phone, laying in my bed in the dark beside a worried and poorly sleeping husband. The site gave you immediate access to requesting an appointment on line, 24 hour a day. Within 15 minutes I had the request filled out and closed my eyes with yet another prayer on my lips.
Tufts was amazing. My phone rang that next afternoon with an intake coordinator, and within 4 days of my darkest hour request, we were standing in a room at the floating Hospital for Children in Boston. The lead doctor in the department was already waiting to see her personally and within 10 minutes, had called in additional specialists from other related departments. The diagnosis was confirmed, the extent to which the disease had progressed was serious and within the hour a team was formed, her blood work was drawn, and the team sat with us to explain that she needed to begin low dose chemotherapy as soon as possible to arrest the progression of the disease, and try to battle it back to a manageable place so her body could begin to heal.
We drove out of the city feeling both relieved to finally have a real plan, and a dedicated team, but shell shocked at what now lay before our daughter and our family. Even before we reached the city limits, the lead Doctor (Dr. Daniel Loo, my heart holds the deepest gratitude for this man) was calling to tell us that the blood work was back, the team had met again to go over everything and had decided that the chemo couldn’t wait until the next week. The prescriptions had already been called in to our local pharmacy and we were to go straight there and start the home based chemo that night. What followed were seven hard months weekly chemo, two trips a week into Tufts for blood work and assessment, as we watched her grow thin and pale, only mitigated by watching the disease begin to recede. She never complained. Not when she got knocked on her ass every week in the days following chemo, not ever. She kept going like a trooper, not even willing to miss a single day of school. She kept saying how lucky she was. How blessed she was because so many other people had worse things happening to them and she had someone to watch over her.