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.

Long weekend

It's been a long weekend. Starting with the ER trip Thursday night / Friday morning. They never did figure out what was causing Mia to get the high fever or abdominal pain. All the Dr's guessed it must be something viral and there is nothing they can do or give her. Best thing we can do for Mia is keep an eye on her temperature, which got up over 102° of and on Friday into Saturday. Switching between Tylenol and advil was the only thing to help give her some relief.
Then came Sunday, finally. .. a good day. Mia woke up after 7 and had her happy smile back. Such a relief after the close monitoring and wondering what was going to happen next. It was a relaxing day of Lego's, rumikub and Yahtzee. Hopefully Mia will continue feeling better tonight, get some good sleep and be ready for school Monday.

Home

We just got home. .. they did a full workup, x-ray, CT scan, blood work. .. they didn't find anything pointing to what caused the high fever. Xray of Mia's chest showed a possible slight start of phenomena but ruled it out. No real answer on what happened but good news that her white blood cell count was normal and her body was trying to fight off whatever it was.  They did give her some antibiotics before we left so hopefully that and some sleep will help Mia.

Sweet dreams princess, we love you.

CT scan

Mia just came back from he CT scan. Really hoping they see something. So frustrating when our little girl is in pain but there is nothing they can do, maybe this time will be different. At least her fever the has come down but it's been up and down all night. The Dr said he would be in shortly with some results. ..

ER visit

I wish I had better news to update everyone with. Today during gym, they were playing dodge ball and Mia got hit in the stomach. She went to the nurse and then called Brandy to pick her up. Once they got home she started to feel weak. Then Mia started to get a fever at which point we call her chemo medicine Dr.

So here we are again. They are checking her over and getting her prepped for a CT scan in a couple hours. For now we wait.