Keely has always been a natural athlete. At an early age, she was the most natural of our kids in the water - she has a natural stroke, good body positioning and can glide. She was quick on her feet and loves to run at the park, chasing our lab and her brother as we play fetch. From an early age, she has loved horses, going to YMCA horse camp, even riding the most ornery of horses when we went remote camping in the Sierra Nevadas. She also loves dancing and this past year danced on the competitive, traveling Hip Hop team. This summer was a pretty typical and active one: horse camp, dance competition culminating in Nationals in Las Vegas and going on a family vacation. Keely was also getting ready and excited to start 7th grade in August. (ok, maybe not that excited!)
Like many dancers, Keely had various joint pains throughout the season. It was to be expected and they always subsided. But on the late May class field trip to Yosemite, Keely’s leg pain in her left knee was debilitating. A quick Ace wrap and an Advil later though and she was back on the way, and completed two long day hikes (13 and 9 miles) with her class. The leg pain persisted, however. Despite the pain, she and her team competed in Vegas in July, but the pain was getting worse, not better. Perhaps it was Osgood-Schlatters, a common growth affliction for growing adolescents. On our family’s vacation to Oregon, Keely spent that week on crutches or on Dad’s back because she was in so much pain. When they returned to San Diego her doctor ordered an X-Ray. And initially, we were relieved to hear that the X-Ray came back negative for OS. But in the next sentence, the hammer dropped, and the doctor told us that there was something on Keely’s leg, below the knee, that they wanted to have a closer look at and we needed to come in for an MRI with contrast. This was Friday, August 3rd and we were on our way to Mammoth for the weekend when our doctor called and said they were working on getting a bed to admit Keely for the tests. Though we were two hours north of San Diego at the time of the call, we could hear the urgency in their voice, turned around and brought her in that day. Later we were told that they suspected a “lytic lesion” in her knee. Tests were done: CT Scan, MRI with contrast and a biopsy. The following day we felt in our hearts that we were preparing for a cancer diagnosis.
On August 9th we had the diagnosis; Osteosarcoma. And on the 10th, after a SPeCT scan, we got the good news that the cancer had not spread and was “just” a 4.5” long tumor in her upper tibia.
We learned that all pediatric oncology is standardized across the US when it comes to chemo and treatment plans for osteosarcoma. The protocol for this type of cancer is 10 weeks of chemo, surgery to remove the tumor(s) and 19 more weeks of chemo. They did not waste any time to get Keely's treatments started. On the 15th, twelve days after her initial MRI and biopsy, and just 7 days after the confirmation of diagnosis, Keely was admitted and the Hickman® was inserted. This allows the doctors to administer chemo and fluids, as well as take blood samples for the duration of treatment without ever having to stick her with a needle again. Over the next two days she received the first round of chemo. The Chemo treatment plan is to be admitted on Thursday and stay through Sunday/Monday as long as no issues arise.
Our first round of chemo was the Doxyrubicin/Cisplatin combo and landed Keely back in the hospital from August 27th through September 2nd because she spiked a fever of 102 and her ANC (white blood cell count) was at 0.
Keely has received three additional chemo treatments; September 6th, 13th, and 20th. She was re-admitted back into Children's on September 27th due to massive weight loss (she’d lost 6 pounds in 7 days) but a transfusion, IV fluids and nutrition have got her back in shape. Her mouth sores (from the Methotrexate) have really made eating uncomfortable.
On Friday, October 5th Mike is flying to UC Davis to meet with Oncology Orthopaedic surgeon Dr. Lor Randall to discuss surgery options available and look into Rotationplasty, a surgery that we believe is the best option for Keely. Rotationplasty is a surgery that has been around for almost 90 years but is rarely chosen by American culture as physicians and many parents choose aesthetics (a good looking leg) over function. RP may look strange at first, but it offers Keely the ability to get back an active lifestyle of dancing, horseback riding, rock climbing - whatever she wants to do, even a thing as basic as handstands all over the house.
It has been difficult to see our daughter, who we love so much and who is so young going through this and we are only at the beginning. Yet, through it all, Keely has been such a ray of sunshine. At times, she does not have the strength to talk to her friends and family, but once she feels better she bounces back and her smile fills the room with joy. We cherish those moments, whether they are fleeting, or last several hours at a time. She has strength! In fact, her oncologist says she’s one of the strongest kids she has ever treated, because Keely, who hates medicine, has managed most of this time refusing anti-nausea meds. She is a strong, young woman.
Keely has a long road ahead of her for healing and recovery. As you can imagine, there are many expenses associated with her recovery not covered by traditional insurance, including much traveling to the hospitals and clinics (like the flights to Sacramento for consultations with surgeons), etc. After her treatment protocol there will be expenses for Physical and Rehab Therapy. Travel expenses to Specialists and costs associated to get her prostheses, etc.
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