How could I forget one of the most important things of the day......... Konner got to EAT for the first time since saturday at midnight!!!!!!!!!!!! He started about 8:00 tonight. And he has eaten an ounce and half. He is doing GREAT!!!!!!!!!!!
Dear Erin, I am so sorry to read of Konner's diagnosis. My husband was an AF officer when my son was diagnosed with NB. I subscribe to google news alerts for neuroblastoma and that is how I found you. You may have already found these resources but wanted to let you know there is a listerv with 700+ NB parents at ACOR.org (look on mailing lists for n-blastoma) and a parent handbook at nbhope.org (look under resources, unfortunately a work in progress and the low/intermediate risk chapter isn't done yet but has other pertinent chapters on coping with treatment) and finally there is a free conference (includes complimentary hotel and meals) for parents in Chicago in July (nbhope.org) and expert NB docs present for two days, and there is a program for kids as well. Many prayers for Konner! Donna Ludwinski ludfarm@arvig.net
Dear Erin, I am so sorry to read of Konner's diagnosis. My husband was an AF officer when my son was diagnosed with NB. I subscribe to google news alerts for neuroblastoma and that is how I found you. You may have already found these resources but wanted to let you know there is a listerv with 700+ NB parents at ACOR.org (look on mailing lists for n-blastoma) and a parent handbook at nbhope.org (look under resources, unfortunately a work in progress and the low/intermediate risk chapter isn't done yet but has other pertinent chapters on coping with treatment) and finally there is a free conference (includes complimentary hotel and meals) for parents in Chicago in July (nbhope.org) and expert NB docs present for two days, and there is a program for kids as well.
ReplyDeleteMany prayers for Konner!
Donna Ludwinski
ludfarm@arvig.net