This is our friend Denika. I met her and her mom last October after being released from isolation at Hopkins. Denika was diagnosed with Ganglioneuroblastoma Cancer and had tumor in her abdomen like our beautiful Haven. Then she was diagnosed with ROHHAD Syndrome.
Denika traveled from her home in Newfoundland to Sick Kids in Toronto to meet with doctors there to find out what they could do to help. I received an email from a Ped. Endocrinologist in Toronto as to what Haven was doing and her treatments and how she was reacting. I gave a brief story and sent her our doctor's info to contact them for more information.
About 24 hours later I received an email from our doctor wanting my ok to talk to her doctors and permission to review Haven's treatments with them. Of course I said yes. Soon Denika was headed back home and began IVIG treatments. About 2 months later her mom, Trina, contacted me saying Denika would soon start the low dose Cytoxan treatments. She would receive chemo every 4 weeks for 6 months. This is what we did to start as well.
Denika was just released from the hospital about a week or so ago and was sent home with oxygen. Her doctors also found another tumor in her chest cavity (like the original) and a tumor on the Pituitary Gland (which we did a MRI for).
Denika is having a trying time right now and her family needs all the happy thoughts they can. Her mother has started a Prayers for Denika Bailey page on Facebook. She needs all the support she can get. Please click on Denika's picture and join her page.
We love you Denika and send all our love to you!