Before the diagnosis, our daughter Isabella was a normal, very healthy six-year-old girl. The only real need for the doctor was her annual checkups. This diagnosis has changed her world as she knows it. To be honest, it has traumatized her with all of the tests, and pokes, and prods.
She is the girliest of girls. She loves getting dressed up, picking out hair accessories, and having her hair and nails done. She is a HUGE Disney fan. It is in her DNA. :-) She LOVES her big brother, school, her friends and her teacher. She is very social, but at the same time can be very shy. She is in first grade and she is VERY smart. She learned to read at four years old. She absolutely loves math, reading and writing her own books. She is VERY caring; always concerned about others or other people’s feelings.
She is very active and likes to ski, swim, ride her bike, and play with her friends. But she loves her down time too. She is a big-time cuddler and is just as happy to spend a day inside watching a movie lounging in her PJs with her family.
She is just an all-around sweet girl. She is all love.
On February 22nd, 2015, she went to the roller skating party for her school and fell REALLY hard on her butt. After that, every so often she’d complain that it hurt. I’d glance at it, not see a bruise and tell her it’ll get better - just figuring it was from the fall.
Her world changed on Sunday, March 15.
Isabella was getting out of the shower and I was patting her dry and she said not to touch her butt. This is how I knew it REALLY hurt her because when something hurts badly (like a new scrape) she tells me when she gets out of the shower not to touch it. So I turned her around and her whole left butt cheek looked swollen then I touched it and it was HARD - like a softball - in the cheek. We immediately took her to our local hospital. They did an x-ray and an ultrasound and didn't know what it was. They transferred her to CHOP. We spent the night in the CHOP ER and they did another ultrasound. Still not knowing what it was, they admitted her and did an MRI the next day, during which she needed to be sedated. That night, they told me it was a very vascular solid mass - not like a hematoma. They needed to biopsy it, which they did on March 17th, again sedating her. They then called us with the results that it was Rhabdomyosarcoma on March 20th. At that point it was stage 3 group 3. They did a CT scan and a PET scan on March 25th, again sedated, and that's where they saw the spot in her left femur. They did the biopsy on that on March 27th under general anesthesia, along with two bone marrow biopsies, and installation of her port for chemo. On March 30th, we got the call that it had metastasized to the femur and that changed her cancer to stage 4. They had a meeting with fifty other doctors on the course of treatment for her. They agreed that they should be able to radiate it after the chemo shrinks it without surgery to remove it. She will need additional radiation now on the spot in her femur. The chemo plan is every week for 42 weeks.
This cancer was not genetic or environmental. It wasn't caused at all by her fall, or anything she or we did. The doctor explained that it was just a freak occurrence. She said that it was actually good that she fell because it brought attention to it. The primary tumor grew very quickly. The Monday before I noticed it, I had helped her get her tights and leotard on for dance. I would have noticed it then if it were as big as it was on the weekend. On Saturday morning, she was wearing leggings and I remember thinking that her butt looked bigger and just assumed it was her body changing, or new muscles from gymnastics. I didn't think to compare both sides at that point.
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