On Tuesday, June 21st, I was reminded all too well that just when you think a child with DIPG is doing good, the disease gives you an unpleasant surprise. Jordan Malave, who has now had DIPG for almost three years, is starting to decline. I have been in touch with Steve Czech and I’ve asked him to contact Dr. Mark Kieran who is the doctor the Mikey Czech Foundation works with. I’ve also reached out to Dr. Mark Souweidane, who is the doctor the Cristian Rivera Foundation works with. I am determined to do everything I can to save Jordan. Each time I go through a child regressing from DIPG I live the nightmare I experienced with Cristian all over again.
Yesterday, Thursday June 23rd, I had the pleasure of seeing Jordan after he graduated from Kindergarten. Jordan is such a wonderful boy with loving parents. I will do everything to get through this temporary bump in the road. I can’t wait until the day that the only things I write in this journal are the sweet messages to Cristian and updates on how great it is that yet another child is still doing well after ten years.
John “Gungie” Rivera
Forever Cristian’s Daddy