Well I was a bit irritated last week and the previous week for obvious reasons and felt it best to probably not write on here. But last week we had the MRI on Monday and chemo on Tuesday. I had hoped to meet with Haven’s doctors on Tuesday after chemo but they were unable to meet with us so I was a bit upset.
I got her doctor’s email address on Wednesday and decided I would send an email of my extreme concerns. Kris was, of course, concerned with what I would write to the doctors and he is probably right in his worries. I can be a bit “not nice” sometimes and have an extreme opinion. :) To put it nicely. I wrote the email and it was about 5 pages of bullet point issues in everything that relates to Haven, hospitals, and doctors. I received a phone call the next morning and talked to her doctor for about 45 minutes.
Here are a few of the main things we discussed – as I am waiting for another call today.
MRI – results are good. No growth in the tumor. We had a few issues here.
Haven’s two Oncologists have been doing stuff…….just haven’t told me anything! Which he says he now knows that he needs to give me every detail as to what they are working on.
a. They meet every Tuesday in a conference with all doctors to discuss patients and Haven is discussed every Tuesday
b. Oncology has a plan but can’t go forward with it until they receive feedback from all doctors: Endocrine, Pulmonology, Neurology, and a sleep study. Once all reports are in they will discuss next treatment plan for Haven with us
c. Doctors have already been in contact with Chicago as for what they did for ROHHAD
d. Endocrine has put in his reports about ROHHAD – which goes with Oncology’s theory
e. Haven’s eye doctor is going on a sabbatical…….so we’re getting a new one.
I was assured that her Endocrinologist knows how to do his job and wasn’t just blowing us off. I have my own personal feelings – and I don’t have to like all of the doctors!
He also knows I'm not a fan of the Neurology center for children but was assured that it is very necessary and that I have to go.
We should find out about the sleep study this week as this is an important way we monitor her breathing.
Again I should have a phone call this evening. Anyway, congratulations to Haven's Oncologist - his wife had their 3rd daughter and he did very well putting up with me!