We received the results from Monday’s MRI while in the hospital on Tuesday. Haven has another mass (tumor) present in the same location as the original one. The size is now at 1.5 x 1 cm. It is again on both sides of the aorta and up against the spine.
As of right now we will not be doing anything with the tumor. Her immune system will be completely shut down as of May 8th and we do not feel it’s worth the risk of an infection due to more surgery.
We will be watching the tumor through MRIs taken every couple months. Her tumor has a history of being slow growing and right now it is pretty stable. We will be taking it one day at a time.
I will keep everyone updated as to any information regarding this.
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
Haven is the strongest and most amazing little girl I have ever seen. As always, we love you all and can't wait for the next update which I am sure will be good news! :)
ReplyDeletePS- You and Kris are pretty strong and amazing too!