Well - we're excited and nervous but Haven starts her first day of home school tomorrow. A teacher from the district has been hired to be Haven's teacher for the year. She will come 3 days a week and will leave homework with Haven to do and turn in each day. We are excited but I think Haven is nervous. We worked on her sight words tonight and she was exhausted after an hour. Hopefully she will be able to handle a few hours each day.
Since doing all her treatments this year - Hi CY and High Dose Dexamethasone - she is unable to go to school because her low immune system. She can't be immunized nor can she get the flu shot. Leaving her too high risk being around other kids. So this is great for her and I don't have to worry about her being alone at a school.
Since Haven is showing excellent results for many of the ROHHAD symptoms she is now on every other Friday schedule with Oncology. Another exciting marker...as she had been seeing them 3 days a week. I don't have the results from her hormone testing yet but I'm sure it will be discussed on her next visit - November 20th. I've also put a call in to her Pulmonary doctor to schedule the next sleep study and to meet with him to check her over. They had wanted a lung function test before Hi CY but it all happened so quick we didn't get it done in time.
MRI of the tumor looked awesome! Everything is stable.