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Candace,
Jacob's doctor doesn't sound like much of a communicator. Have you considered getting a second opinion from another doctor? You can bring previous test results so Jacob won't have to endure more tests, and hearing what another doctor thinks will give you a better picture of the reasonable choices of treatment (one choice being "wait and watch"). A good pediatric hematologist ought to be willing and able to answer as many questions as you want to ask.
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