Finally a diagnosis! C.R.M.O.

Olivia had her 3rd biopsy last week, the results showed no histiocytes, nor any signs of infection, bacteria, fungus etc. Our oncologist and the team he consulted with suspected the lytic lesions were caused by Chronic Recurrent Multifocal Osteomylitis, a very rare disorder. He referred us to a CCMC rheumatologist, Dr. Zemel. After meeting with us, he consulted with Dr. Polly Ferguson, from Iowa, who specializes researching CRMO. When the oncologist mentioned CRMO, I knew just what he was talking about as I came across it on BoneTumor.org. It mentioned pustules on the hands and feet, which she has had in the past. Our pediatrician and I believed it was eczema...treated it with topical hydrocortisone...but who would have known it would lead to or be connected to this?

Today we went back to CCMC for another (2nd) pamidronate infusion. Dr. Parikh and gave us an update and said he was sure that is C.R.M.O. Compared to the 'differentials' we were faced with, this appears to be the best diagnosis we could have hoped for. It's an autoinflammatory disorder that affects 1 in a million, mostly girls around the age of 10. Dr. Zemel came in to speak with us as well.

Here's a list of things we feared it could have been: bacterial osteomyelitis, Ewing sarcoma, leukemia, lymphoma, neuroblastoma metastasis, eosinophilic granuloma, Langerhans cell histiocytosis or non Langerhans cell histiocytosis. 

The treatment for Chronic Recurrent Multifocal Osteomylitis is (for her) Pamidronate infusions (which we already started), non-steroidal anti-inflammatorys, or steroids. Dr. Zemel said she may not even need any more infusions because after the last one, the MRI showed a bit of improvement. She could take an oral biphosphonate. He wrote her a script for a strong NSAI and we're waiting for the insurance to approve the new prescription. They tylenol w/codiene knocks her out and makes her a little off balance etc.


The rheumatologist wants a 'bone scan' which differs from a full skeletal survey. It was explained to be like an 'MRI' but any altered, affected bone will 'glow' in the images. In the meantime she's a little tired/weak from the infusions but showing no signs of hypocalcemia, like last time.

Read more about Chronic Recurrent Multifocal Osteomylitis at Bonetumor.org

Another Biopsy

After meeting with our Oncologist last week, he informed us that all the Histiocytic disorder specialists and pathologists wanted a culture done to rule out the possibility that the damage to Livvy's spine was done by infection. We met with the Infectious Disease specialist at CCMC who wasn't convinced that this was an infection because had it been, it would have 'colonized' in one place, then spread to surrounding vertebre. Olivia's lytic lesions are spread out, some in the upper vertebrea, then down at her sacrum. The Histiocytosis experts, including Dr. Shiela Weitzman at the Hospital for Sick Kids in Toronto, Dr. Arceci at John Hopkins, Dr. Ken McClain in Texas, pathologist Dr. Jaffe from Pittsburgh and many others were all consulted about her lytic lesions and all agreed another biopsy was in order.

The neurosurgeon would not do another open biopsy, I agree. I wouldn't want to put her through that again. The other doctors would have preferred another open biopsy. My choices were: Let the 'disease' progress or hope that it goes away on its own then deal with her back later, OR, get another biopsy to pinpoint what the heck is going on and start treatment before more damage is done. I chose to do another biopsy, a needle biopsy.

Thanks to Christine from Childlife!

Olivia had the needle biopsy yesterday. This time they went in for the lytic lesion on the sacrum (tailbone area). The took core bone samples and the doctor who preformed the guided CatScan biopsy said the bone was more dense this time and sclerotic. Hopefully they can either prove or disprove that this is Histiocytosis or an infection.

She was very groggy, cranky and irritable after the anesthesia and versed. Since her procedure wasn't done till about 3pm and she hadn't eaten since the night before, she was pretty much 'starving' and demanded pizza from Vinny's. She ate, took tylenol w/codiene when the pain kicked in and went to sleep for the night. She was supposed to meet with her tutor yesterday (2nd session) but we had to cancel and I'm canceling todays session to let her rest.

Huge thanks to Christine from ChildLife for spending ALL DAY with us yesterday. She is a great comfort to Livvy, made her laugh and provided some fun games to help keep her mind off everything. I can't stress enough how helpful Childlife has been.