Just little updates on Haven as she begins 2008. This year will be filled with doctors, tests, labs, and probably more tests. On Friday, December 28th she was diagnosed with a 2" x 1" tumor located in her stomach (at belly button level) towards the back near her spine. What's up for this week:
Monday I went to her doctor's office twice to order more blood pressure medicine and confirm her appointment with the doctor. Her Endocrinologist called and has ordered more salivary tests to be done this week.
Wednesday Kris will pick up her testing tubes at the lab.
Thursday she will go in for her blood pressure check at her pediatricians office. They will then review what the Oncologists have said.
Friday we meet at J Hawk (pediatric cancer side of John Hopkins) at 1pm. We will be meeting with the team of Pediatric Oncologists and the surgeon that will be removing Haven's tumor.
I will keep everyone updated through here if you are unable to reach one of us....
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
Subscribe to:
Post Comments (Atom)
ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
-
Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
-
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
No comments:
Post a Comment