Hi NikkiNak,
I have a couple of suggestions, you can call AAMDS.org and they might be able to give you advice on how to contact Pedi Specialist that might be able to teleconference and/or even speak to your son's Pedi Hem/Onc. I know that they have given me very helpful resources.
The other thing you might want to try is to get in touch with "Band of Mother's..." on FaceBook. They might have some suggestions as well.
https://www.facebook.com/BandOfMothe...Anemia?fref=ts