Hello everyone. Larissa went in on Monday for her CT scan and to have her broviak lines removed. Last minute they decided to wait a couple of more months to do her MRI. There were a few reasons why.
1) With Medullablastoma, they’ve had a huge success rate with the Chemotherapy treatments chosen for Larissa that there is an extremely low chance that there would be any sign of another tumor. On top of that, the genetic gene that Larissa has that caused the Medullablastoma is called “Sufu Mutation”. This miswritten gene has had even better results with the chemotherapy they did and gave Larissa an even LOWER chance of having any “signs of disease”.
2) Putting Larissa under sedation for longer periods of time can cause her Pulmanary Hypertension to worsen. The CT scan and broviak removal took about a hour. The MRI alone would have been about 2-2 1/2 hours long which would have had Larissa sedated for a total of 4 hours instead of just an hour and half.
3) Even though there is a very low chance we would have found anything in the MRI and everyone felt confident about that, even if we had found something, Larissa’s lungs and heart are not strong enough at this point to undergo anymore chemotherapy or radiation.
With all of these combined we figured the risk was greater than the gain. We will return to Denver in a couple of months to have that MRI done but want to let her Pulmanary hypertension heal more.
We won’t get any results from her CT until Friday when we meet with Pulmonary Hypertension team. We have a busy day Friday as that morning after we meet with them, Layla and Logan will be getting their MRI’s done. I’m sure we will know right away if they find anything concerning but then we won’t actually meet with the Neurology team until Monday. I will try to be better about updating everyone this Friday after we get news from the doctors. We ask for continued prayers as we enter into some of the final stages here in Denver. We are hoping to be headed home soon. #TEAMLARISSA
