Nora’s Story 4

Nora is home from the hospital!!!!

She is doing great. She has started taking her medicine by herself. No more power struggles! She decided on self-control rather than begging, bartering, and bribing. She doesn’t even flinch when she gets her daily shot. She is so amazing. We are just in awe of her strength. Our home is über clean Those of you who know us well, realize this is a feat in itself! (We used to be true believers in the adage “A clean house is a sign of a wasted life!” )

She has started “Beads of Courage” which is a program that gives a child battling a serious illness a bead to represent each treatment that child has endured. It creates a visual timeline so their journey is easier to discuss with friends and family. For example, each trip to the hospital is a yellow bead, each shot a black, each transfusion is a red, radiation is a glow in the dark, a trip to PICU is a heart, surgery is a glass star…etc. They also have beautiful glass beads for Acts of Courage and Special Accomplishments. So Nora gets a bead when she doesn’t cry for a shot, when she gets a line into her port…etc. She also got one when she graduated kindergarden (in the clinic). Her goal is to decorate our Christmas Tree with it and have the “Purple Heart” (the bead for a completed successful treatment) right under the Christmas Star.

She has been doing amazing. She didn’t need platelets on Friday because her white blood count went up .2 (which is VERY small, but a step in the right direction!) She will be getting them Monday and hopefully her white cells will go up another .2!!!!!

Please continue to pray for her! It’s working!!!!!

If you can, get to the Mastic Beach Property Owners Association at 31 Neighborhood Road on Tuesday July 26th from 2-8pm and donate blood or platelets in Nora’s name. There will also be an opportunity to become a bone marrow donor. All it takes is a cheek swab. [I’m looking at all you Corrigan’s! I hope you can get out to Mastic Beach or at least get swabbed through the mail]

THANK YOU all for your wonderful support. For all the wonderful things you do….

WE LOVE YOU all so much!!!!


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