Pain & next surgery

The past few months Mia has been having flare ups in her mouth. She stayed home from school all of last week. The spots were inflamed, painful and bleeding. We were able to get an appointment at UW on Friday in the anomalies clinic to see a plastic surgeon, neuro surgeon and ENT to see what our options are. We found out that these spots are not just on the surface. From the last MRI they could see that the malformation is not just superficial, its growing above the roof of her mouth. They compared it to an ice burg in the sense you only see the tip, not what sits below.

The first step we will be taking is a laser surgery that will give temporary relief, healing the bleeding lesions. Once that has healed, they will discuss doing injections to shrink the malformations like they have done in her forehead and cheek. However this has some risks due to the nerves and arteries that run thru the the roof of the mouth.

Surgery is setup for Thursday, just not sure of the time yet. Probably the afternoon and will require an overnight stay. We will post the time once they we have it.

MRI results

We met with the doctors to go over the results of the MRI scan. It was a good news bad news situation... the chemo meds she had been taking for the past 5~6 months did not make any changes (bad news). Because of that, she is no longer taking those meds and going thru all the side effects associated with it (good news).

So with most the other meetings we've had with the doctors, they are not sure what to do next. They offered two initial ideas;
1. Steroids -
Mia would take them for a week then off for a while. This way the side effects could be minimized and might not have long term effects vs being on them all the time.
2. Radiation -
Mia could undergo radiation treatments in the areas that are causing the most pain. This however has its own set of side effects, not sure they will out weight the good.

MRI

Mia has had some ups and downs the past few weeks. Prior to this week, Mia made it two full weeks at school with minor pain. This was this first time this school year she went an entire week, let alone two weeks. That all ended when Mia got sick and had major pain over the weekend. Her pain would come on quickly and would bring Mia to tears, instantly. This was a first that she has had any pain with such intense symptoms. She had to stay home Monday - Wednesday and went was able to go back Thursday, however she had an eye Dr appointment so it was a short day of school.

Today we are at UW for her 6 month MRI then we meet with the Dr to review the scans. This will hopefully show what effect the chemo med has had.