Progress (delayed entry) 9-7-13

9/8/2013

Progress made today! Cam smiled! The NG tube was pulled (2 more to go out of 6 extras). He has been able to drink about 10 oz of liquid and keep it in! We came down on his epidural meds. Fevers gone!! He got out of bed to the chair twice. Hoping to quickly transition to oral meds and get rid of epidural so he can start walking! He has an unexplainable rash on his stomach and back....has to be massive amounts of tape/bandages all over him (he has sensitive skin). Recovery and homebound!!

Aunt Donna

9/8/2013 09:55:36 am

He looks so good for all he has been through. Progress being made all the time. it is such good news. he certainly has both of your strengths. We are still praying and expecting that miracle. We had a nice afternoon at UCONN visiting the animals with Mom, Emma, Natalia and Brookie. It was a lot of fun and the kids enjoyed themselves. Lots of love, hugs and kisses to all of you.

Monique

9/9/2013 05:06:32 am

Keep on smiling Cam!! Hunter and Nolan send big hugs!

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Mommy & Me

Mommy

She's going to keep everyone up to date about my progress. Isn't she the best mommy ever?

Mommy thought long and hard about my new website. She thought about protecting me and not putting my hospital pictures online. But my mommy wants everyone to know that Neuroblastoma isn't just another illness, that it's scary and very serious. My mommy wants to make sure that other kids don't go through this and that their parents know what to look for. My cancer is very mean, and I'm scared, but I have my mommy - and daddy - to rub my belly and hold me tight. I love them so much!

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Diagnosis: May 9, 2013
Surgery: September 2013
Transplant: September 2013
STRICT ISOLATION UNTIL
January 2014
Radiation: November 2013
Antibody: January 2014
END OF TREATMENT
June 9, 2014
DFMO Trial: June 2014
(27 months of DFMO)
**FINISHED ALL TREATMENT
JULY 25, 2016

5 years from diagnosis!!
May 9, 2018

5 years from frontline!!
June 9, 2019

IN REMISSION: pending
(waiting for 5 year mark from maintenance).

Benign Tumor: June 2019