September 12, 2013


Madeleine was released from the hospital yesterday.  She is still a bit radioactive, but not too much.  She got pretty bored during isolation, got sick of t.v., and had to resort to math worksheets.  At one point she also colored with marker all over her body and all over her bed.  Fun times!

They took a quick MIBG scan before discharge to see that the medicine went to the right places.  The tumors all showed good uptake of the radioactvity, so Dr. Matthay thinks that she will have good results from this treatment.  They won't do scans again for 6 weeks, so we really won't know for sure until then.  Meanwhile, we are staying at my parents until Mad gets her stem cell infusion next Friday.  Laurel and Claire are here, so it has been nice being all together for the time being.  Ryan will fly home to New Mexico on Sunday, and then the girls and I will fly back in a little over a week.

The blood pressure medication that she was on has been discontinued (yay!) because her pressures have been good.  She is currently on potassium iodine to help protect the thyroid from the radiation, and she has six more days of vorinostat, which is a chemo drug that she takes by mouth.  Vorinostat helps the MIBG go to the right places, and it may kill some tumor cells as well.  She is having some nausea, but other than that she is feeling great!


Anonymous said...

It sounds like the treatment is going as well as can be expected - I'm glad. :)

-e said...

Hi Madeleine
I am so glad you came to visit and I was able to meet you. You are really a terrific young lady. I hope you are feeling well and I am sure you are enjoying not being in the hospital. I told my granddaughter Gabi all about you and she wants to meet you. She also loves purple, ruffles and leopard prints. Please tell Laurel and your Mom hello.