Progress (sort of)

check out the decorated "Minerva" brace

Olivia followed up with hemo/onc. last Thursday, the plan was to get a a brain MRI, x-rays of her jaw, a urine sample and some additional lab work to once again 'rule out' all the 'bad stuff' and any autoimmune disorders. The jaw x-ray was done because she complained of sensitivity when a nurse took her temp by ear.

Today we went back and the Onc said the x-ray "appeared" to show another mass on her jaw and 'possibly a fracture'. We then talked (cried some too) about treatment, which will include something like Fosamax, prednisone and vinblastine.

Impatiently waiting at the clinic

She was sent down for a CT Scan, which she did like a trooper, without SEDATION (yay!) We went back and waited in the clinic for the results, while the Onc Dr. prepared a form to bring to DMV for a temp-handicapped parking pass (long walking takes a toll) and a wheel chair, in case we want to actually go somewhere FUN.


The CT Scan was CLEAR and showed no lesions- just a lonely little tooth that hasn't erupted yet! So back to the drawing board.

No definitive diagnoses other than "non langerhans histiocytosis," and still trying to rule out the uglier things. They delay is because the sample taken during biopsy were weird, two showed normal cells, the other can't be pinpointed.  Still waiting for more guidance from John Hopkins & North Shore's opinion.

We Love Becky from Childlife-she rocks!

In the meantime, the Onc suggests starting fosamax to rebuild the bone...the steroids were on hold because of the brace/ fracture. Once she's out of the brace we can start steroids, which is in about another week or so. Maybe vinblastine...he gave me lots of homework to do, printouts off all the meds/side effects, etc. We also want to be SURE we treat whatever this is the right way, without "masking" anything else. Whew. So we're home now. As a reward for not freaking out during the CT scan and all her bravery today (not one tear during blood work!) we're going out for dinner.

(By the way, this type of back brace is called a Minerva Brace.)