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Helpful Tips to Navigate Your Journey

Lessons learned from Elyse's Journey

Questions to ask your Oncology team

  • What is the specific subtype of Leukemia?

  • Is this a high risk subtype?

  • Do you have a High Risk Leukemia team?

  • How many patients have you treated with this subtype?

  • Are there any hospitals that treat higher volumes of this subtype?

  • Wat is your success rate for this subtype?  5 year survival? Long term survival?

  • How aggressive are your protocols for this subtype?

  • If transplant is needed, what is your annual transplant volume?

  • How does this compare to other institutions?

  • What your the transplant parameters for my child?

  • What would prevent you from doing a transplant?

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Strongly consider having a non-parent present in all meetings with the Oncology team to record the information.  You won't remember all of the details.

Finding Research Studies

For specific subtypes

All clinical trials are listed at the site below.  To get the most accurate results, enter the specific subtype and pediatric in the search parameters and select the appropriate country.

Pediatric Oncology Hospital Rankings

Emotional Support Services

Help for the whole family

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