Wednesday, July 9, 2008


It's official. We really, really like our new hospital. We were back in the Tampa office of All Children's this week, instead of the St Pete office we were in last week. This is the scene of the initial complete and utter meltdown the first week we switched. I was worried about going back and switching locations again(in her mind at least). She was GREAT! I was so proud of her. She was brave and happy and cooperative. She did a fantastic job and I think it is safe to say we are officially over the hump.

We had our first meeting with the Neuro-Oncologist. She seemed great. She had not yet seen Mandy's MRI's. But, we talked about everything and she seemed to know not only brain tumors in general, but also Neuro-fibromatosis. So, I was impressed and feel really positive about the decision we made to move. She will be presenting Mandy's case to the tumor board. This is a concept I have always loved for my "unusual presentation" brain tumor child. Tumor board is when basically everyone, who is anyone in relation to the care and understanding of tumors sits down at one table and talks about each patient. It consists of neurologists, neuro-oncologist, neuro-surgeon, radiologist and oncologist. I expect it will take a while for the practice to get a handle on Mandy's case as it is so out of the usual for NF kids. But, right now, I have a lot of faith in them and feel good about it.

Mandy did beautifully today at chemo. Her blood counts were good. She was so bored by the end of it all. She was hooked up and being treated from 9:30-6:00. There were no allergic reactions again this week so the premedicating and slower infusion seem to be doing exactly what we hoped they would do. Thank God!

Just to give you an idea of the timeline...
1) Triage from nurse(vitals etc)10 minutes
2) Dr exam time depends on how many of my 9.3 million questions I torment them with that day
3) Access her port time depends on what number Mandy picks to count to before the nurse can use the needle
4) Flush port with Heparin(anti clotting drug) and draw blood for all bloodwork
5)Run in 20mg Benadryl(antihistamine to combat allergy to Chemo drug) about 15 minutes
6) Run in 40 of Hydrocortisone(steroid to combat allergy also)about 20 minutes
7) Run in Zofran(anti nausea) about 15 minutes
8) Run in Vincristine (first chemo drug) about 10 minutes
9) Run in Carboplatin (second chemo drug) 3 hours
10)Run in Saline (post chemo hydration) 2-3 hours
11)De-access port about 10 minutes
Finally done. And for the most part she is sitting in the same chair in the infusion room with basically movie watching, nintendo playing, coloring, reading or other stationary activities. Not hard to understand why she is bored out of her gourd by the time it is all said and done.

We got exciting news and have the official travel dates for Mandy's dream trip! She will be going to Atlantis from Aug 8-10! She is even going to take the other four of us with her. How about that!? She is so excited!
I don't have any other information yet, but will soon.

I am sooooo stupid tired tonight. I can't even see tired from where I sit. Merely just being tired would be a huge improvement. So I am off to bed.

Gotta be up early to head of to Mandy's neurologist appointment. My kid LOVES her neurologist!! He is the only Dr that gets this conversation.
"Hey Mandy , you have an appointment with Dr Foradada tomorrow."
She is genuinely excited to go see him. Hopefully she won't be too sick tonight and tomorrow.

Thanks for checking on her. Love to all~

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