Manic Friday?

Well, we were moving right along at a steady pace.  Aly has been doing good.  She made it to swim practice, again, on Wednesday.  She lasted about 1/2 an hour again.  She looks great, Coach Michelle said she looks fantastic in the pool.  She hasn't lost her great swim techniques.  So now she just needs to get that energy back!
Aly has been feeling good, eating good but she has been having her jaw lock up on her.  The first time it happened was near the end of radiation treatments.  Since then, the frequency had steadily been increasing until it was several times a day.  This past week was good and it didn't seem to happen at all, until Thursday afternoon.  I received a call, from the school nurse, saying that Aly was in gym class and Aly said her eyes started closing on their own.  She was unable to stop them from closing and it took a couple of seconds before she could open them again.  She also said it felt like her whole face tightened up and her jaw locked on her.  Another student noticed something wasn't right and asked Aly if she was ok.  Aly just told the girl to let the teacher know she was going to the nurses office.  So, this time we had extra symptoms along with the jaw lock.  By the time I got to the school she was fine, but very frightened and all she could say was she didn't want to go back to the clinic.  Poor girl, she has been to that damn clinic so many times and it is NEVER any fun!  But, that is where we had to go to get things checked out and see if we could figure out why this happened.
So, an appointment was set for Friday at 2pm.  That was the earliest they could do.  We got there at 1:45 hoping maybe we'd get in and get out.  Yeah...no!  The doctor came in at 2:30pm.  She took a LONG time asking questions, wanting details of what happened and history on the jaw locks.  She examined Aly from head to toe and pretty much seemed stumped.  She hadn't heard of such symptoms after cancer treatments, so she wanted to take the time to call an ENT (ear, nose, throat) doctor and the local radiation doctor.  She had already emailed (as did we) the doctor at the Proton Clinic in Florida.  He didn't want to put in his two cents without seeing recent documentation and imaging.  Our dr. here, said the proton centers typically don't rush into anything because it is such a new treatment.  Anyways, we were sent upstairs to the ENT doctor for a quick consult then we had to return to the clinic.  The ENT dr. was fantastic.  Very funny man.  Very kid friendly.  What a nice change that was!  Aly had on her sock monkey hat and he was telling her how styling she was.  He said, "the only way we'll get a quick fix is to do a whole brain transplant, dog, pig...whatever."  I said, "how but a monkey?"  He said, "oh, yeah, that'd be good too."  He made Aly smile until he ordered a blood draw.  She doesn't have her port anymore, so it is a needle into the arm, now, when they need blood.  She's not happy about that.  When she had her port, she couldn't feel anything.  The ENT said it could be a few different things.  He thought the fact that Aly had to lay on her stomach and put pressure on her jaw, while her head was in the mask, could be a factor.  Her jaw muscles may be irritated.  He said low body salts could also be a reason for muscle spasms, so that's why he wanted to check the blood levels.
We headed back to the clinic and reported the findings to our cancer dr.  She said while we were gone she consulted with the radiation doctor in Mpls. who thought it is probably the fact that radiation can cause nerve and muscle inflammation.  No one had seen quite the symptoms that Aly described, but it wasn't out of the realm of possibilities.  From the clinic, we had to head downstairs to the lab.  There was a problem getting the instructions to the lab, of course, so we had to wait longer which increased Aly's worry about the needle in the arm.  The lab tech could hardly speak English and he was not AT ALL friendly.  I think part of the job requirement, if you are working at a children's hospital, you should have a background in working with kids.  Aly was crying.  She had her favorite little monkey, Tiny, with her.  She was squeezing him, and I was just thinking I was glad that wasn't my hand she was squeezing!  (Tiny is the monkey featured on the Rally t-shirts).  Anyways, it wasn't as bad as she thought it would be.  She told me after that she was afraid of fainting because she has fainted twice before.  I had to remind her that during those times she had an I.V. sticking out and she said, "oh, yeah."
Finally, at 5pm we were free to go.  Yep, 3 hours!  I wish I would've kept a diary of how many hours we have spent at Children's.  It's amazing.  No wonder she hates it when we have to go there!
After all that, we don't have any concrete answers.  Only the speculation that it is nerve/muscle inflammation caused by radiation.  We did get an email, this morning, that the proton doctor consulted with his counterparts and one dr. had an older women present the jaw lock symptoms after treatment.  He said it corrected itself after about 6 months!  For now, we are adding ibuprofen to her list of medications to see if it will help.  Her blood levels are good, except her phosphorus is low, which could explain the fatigue she still feels.  So, we will be adding a dose of that as well.  We need to start keeping a diary of the jaw locks, when they happen, what happens and what Aly is doing at the time it happens.  The fun never ends!