Updates

Well we had a big day at Oncology yesterday. Haven did very well receiving her Rituximab. She always does very good at this stuff. She even talked to the clowns for the first time in 1 1/2 years!

We received the next plan of attack on Haven's ROHHAD Syndrome. This new plan is definitely not something we can take easily. Kris and I have been discussing it since our meeting with the doctor. As we have not come to a final decision on our side yet and I have not informed/discussed it with any family members yet - I will not post the details as of yet.

We are definitely taking all the risks and scenarios in to consideration when making this decision. I never thought I'd ever be making these decisions or living with a major illness in my child. But here we are. I probably won't post anything about the treatment until our next meeting with Oncology on June 5th when Haven goes in for her IVIG treatment. She hasn't had IVIG since the end of last year.

One good thing is that we have discontinued the Cyclosporin at home. Although it was not a hard or long process to prepare this chemo it was still a lot of working keeping on the shotglasses clean and I went through two eye infections with this stuff. So we are pretty happy about that.

Haven and I will be spending the day with her grandpa today. Dad is taking a much needed break.

First we are heading out to Cockeysville (1 hour drive) for Haven's dentist appointment. She needs to see a special dentist that works on children who are on chemo. After the dentist we will go to lunch and then to the mall. I want to get new pictures of Haven done professionally. So we'll do that today. Then tonight she wants to see Night at the Museum part 2. So that will be fun. We definitely have a busy day.


I haven't spoken with Julie in a while - as we were at the hospital all day yesterday as well. I do know Mason is still in the hospital and still using his oxygen. We're not sure when he will be home as the doctors have not given a definite date. We think of Mason all the time and I know how difficult it is to have a vented child be sick not to mention a respiratory illness. We have been sending texts to Mason and giving him hugs from MD. Thanks to everyone for visiting his site - he's gonna love it when he gets home.

Love to all
M