Monday, December 8, 2008

Official Diagnosis (...or not)

Last week, we received the official diagnosis for Isabella's brain cancer:

Glioneuronal neoplasm with anaplastic features (which is a type of anaplastic astrocytoma)

There is a clinical trial that specifically treats these malignant gliomas in young children, called Head Start (Phase 3). The protocol for this treatment calls for 4-5 cycles of chemotherapy (4 weeks apart), followed by a final week of extremely intensive chemotherapy. That final dose is so severe that Isabella will require a stem cell infusion to assist her recovery since her white blood cell count will end up being very low. If necessary, we will then use radiation to kill any remaining cancer cells. The purpose of this trial is to eliminate or reduce the requirement to use radiation since radiation has several long term side effects affecting intelligence, growth, and motor skills.

Once we received the diagnosis, we sent the MRI slides and pathology results to St. Jude's Children Research Hospital in Tennessee for a second opinion. Today, we received a frantic call from St. Jude's to ask if we've started chemo yet, and we told them no. It was supposed to start today, but was postponed another day because of Isabella's fever. Apparently, the pathologist from St. Jude came up with a different diagnosis:

Vascular ependymoma (most likely anaplastic)

They need to run some more tests to verify it, which will take a few more days. As such, we will be moving Isabella back to the Rehab center so they can continue with her therapy.

Neither diagnosis carries a prognosis that is necessarily better or worse than the other, but this new diagnosis is significant because an ependymoma does not react well to chemotherapy and is instead treated with radiation. Because of this, we will be holding off on chemotherapy for now until we get the final word from St. Jude.

Unfortunately, we will now have to go for a third opinion, most likely to Johns Hopkins. Since the neuro-pathologist at St. Jude is a nationally recognized pathologist, we expect the findings to match with St. Jude.

You may ask how two pathologists can come up with such varying diagnoses? Well although there are roughly 3400 new brain cancer incidents in children every year, the type that Isabella has is extremely rare with about 50 incidents per year. Because of this, not a lot of people have experience diagnosing it.

1 comment:

  1. Hi Roneil & Julianne-I'm glad to hear you're getting a 3rd opinion from Johns Hopkins. Dr. Ben Carson is probably the finest pediatric neurosurgeon in the country, and head of that department at Johns Hopkins. His website is www.drbencarson.com for anyone wanting more info about him.

    Let us know if there's anything we can do. Teodora would like to know if she can visit Isabella soon.

    -Tess

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