Our youngest daughter, Lillian, has now spent more than half of her life fighting the ugly disease called Cancer. On March 4, 2015, at 23 months old and after months of searching for answers, Lillian was diagnosed with a rare form of pediatric cancer called Alveolar Rhabdomyosarcoma. This is a type of tumor that is normally found in teenage children, and is an aggressive form of cancer that affects the soft tissue.

In a little over 2 years she has battled cancer 3 times. Her first tumor formed in the left eye orbit and it took 30 weeks of chemo over a period of 46 weeks, and 25 radiation treatments, 5 days a week for 5 weeks.

On Memorial Day 2016, another lump was discovered on the left side of her face so Lillian had to have a parotidectomy where they made an incision and removed the parotid gland to get what we hoped wouldn’t be a 2nd tumor. The pathology report returned and she was diagnosed in June with recurrent Alveolar Rhabdomyosarcoma. Her second battle consisted of 24 weekly chemo treatments and 28 proton radiation treatments, wrapping up in mid-December, 2016.

In late January 2017, another bump was discovered in Lillian’s left orbit area; this one is in almost the same location as her first tumor. After weeks of setting up scans, tests, biopsies, and waiting we got the devastating news that Lilly’s cancer had returned for a third time. This time she received high dose chemo where she was admitted for 4 cycles of treatment over 4 days and 3 nights each and another 28 proton radiation therapy treatments. She finished up these treatments at the beginning of May and we celebrated clear scans just after the 4th of July.

When Lillian was diagnosed the first time, we were told her case was a one in a million.  Now after 3 biopsies, 14 MRIs, 8 CT scans of the chest, having to be sedated over 100 times for surgeries, proton radiation, and scans, 58 weeks of chemo, 81 radiation treatments, and 15 hospital admissions we were reminded, while asking questions that had no answers when we were asked, if we totally understood how rare Lilly really is.  Kids her age don’t get this cancer. They don’t beat this cancer. They certainly don’t do it three times. Sometimes we forget all of this because of just how easy she makes it all look.  She defies all odds.  Her future consists of a long and overwhelming list of side effects, on top of the constant worry of a recurrence, yet she shows us how to look forward to living every day with courage, hope, and love.