quick note!

I am so sorry!   I heard from a couple of my friends, who are not on Facebook, who were wondering how the MRI went.  All this social media, I forget to update it all!  There is a Rally for Aly Facebook page.  I tend to be on Facebook more so I sometimes forget the blog...

Anyways,  the MRI was normal.  They focused on Aly's jaw.  They did not do the whole brain, but did enough to get the pituitary region in the picture.  The jaw and original tumor site are all looking normal.  So, they continue to feel it is just side effects from the radiation.  They suggested we have Aly do some physical therapy for her jaw to see if that may help.  Otherwise, it just seems it needs time to heal, like everything else.  On another note, Aly has some hair growing on her head!  Yeah!  It is kind of patchy which we were warned about, but we were also warned it may not come back at all after the radiation, so we are very happy to see some progress...she also went swimming again tonight!

Saturday

I've got to say, "THANK YOU" to STMA Middle School East.  Rally for Aly day was amazing.  A perfect way to start of a Friday morning.  We walked into the middle school and saw an awful lot of blue!  We heard, "rally for Aly, rally for Aly" over and over and turned to see that they were attempting to sell more rally t's.  We went into the gym where all the students gathered for a picture and the gym bleachers were pretty near full!  It was awesome.  I'm looking forward to seeing the pics!  Aly leaned over and said to me, "this is an odd day!"  She is so funny.  She is definitely not an attention seeker.  She is definitely a giver and not a taker, so she finds it difficult to know what to do with something like this.  I hope she just got the fact that people care, want her to be healthy and support her how they are able.  As the kids were exiting, we got to say thank you and give high fives.  It was so cool!  We are grateful, thankful, and blessed to have such a wonderful community.
Aly is still feeling good.  She continues to have her jaw locks.  They seem to be more frequent.  Although they are not painful, they are bothersome.  Her cancer doctor asked me to keep her updated so I let her know and they want to continue to be thorough and make sure this isn't anything to worry about.  So, we have an appointment scheduled for an MRI and another clinic appointment.  Unfortunately, with schedules that book weeks in advance we can't get them on the same day.  With a little pushing on my behalf, as I did not want to miss more work, the MRI is scheduled for Sunday morning (tomorrow).  Of course, we only have to drive to St. Paul Children's Hospital to get it accomplished!  The doctor appointment will have to be on Tuesday.  Please keep Aly in your prayers tonight.  These MRI's make me a nervous wreck.

Today, there is nervousness, sadness, and worry in the air.  Not just for Aly, but others in our community.  It seems our small cities of St. Michael and Albertville have a lot going on lately.  Please pray for the Heil family.  Mr. Heil is a first grade teacher at Big Woods.  His parents are part of the missing from the cruise ship tragedy in Italy.  Please pray for Luke Letellier.  He continues his courageous battle with cancer.  He was supposed to join the H.S. hockey teams for a picture, today, but he is not feeling well enough.  His mom asked me to spread the word that prayers would be appreciated and are needed today.
We've heard of many families that need prayers and support.  Please pray for peace and strength for all.

Thank you!  

Rally Days

For those of you, not on Facebook...

At Middle School East, and probably the high school, tomorrow is Luke Letellier Day.  Everyone who has a Team Luke shirts should wear them proudly.

Friday is Rally for Aly day.  Anyone who has the Rally T's put them on, on Friday, and Rally for Aly.  If you do not have a Rally for Aly shirt, please wear blue (Aly's favorite color).

Thanks!  Aly is doing good.  She went swimming last night and plans to go again tonight!  WOO HOO!

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!        

good vs. evil

I've always pondered the question, "do you want to hear the good news or the bad news first?"  What answer do you typically give to that question?  Which do you like to hear first?  Well, I don't have any bad news in regards to Aly, just good news.  I am just really frustrated with the health industry today and that is the evil part of my post.  

The good news is that Aly went swimming with her swim team last night.  She didn't last a long time, and got tired out within a 1/2 hour, but it is such a relief to see her starting to get back to some activities.  I think it is good for her to get those muscles moving again.  It is a good tired instead of a health related tired.  I think we may have to invest in getting some prescription swim googles though.  They were doing some warm up exercises, before getting into the pool, and Aly had to come back for her glasses.  Her prescription isn't that strong and she hasn't needed glasses for swimming before, so I'm not sure if it is a comfort thing for her or what?  It may just take some getting used to the vision fields she has.  One step at a time!

The evil part of this post has to do with the frustration in dealing with the health industry and its lack of common sense, the lack of common courtesy, and the lack of understanding.  I would very much like to get involved, somehow, to help reform.  I feel like I, by myself, would not be able to do much, but if anyone knows how I can help make a difference, bring it on.  If I had the time, the money and the backing, I'd love to start a non-profit that would help people navigate through a health crisis.  You never know what it's like until you've been through it.  I will say our insurance has been very good to this point, so I shouldn't complain too much, but I can't imagine what it would be like for those without good coverage or no coverage.

The latest issue is the time it took to get a medication for Aly.  It is a single dose of a steroid that Aly needs in case of an emergency such as an injury or serious illness.  Because her pituitary does not work, her body no longer produces the adrenaline needed to help cope with a serious injury.  We have a dose at home and the doctor suggested we have a dose at school as well.  It makes perfect sense, since she is there a majority of the day, right?  It has taken us, from the time Aly returned to school (Nov. 2) until today to get what we needed.  After rounds of communication between the doctor, the insurance company (who didn't want to approve it) and the pharmacy, I went to pick up the dose last week.  When I got home, I looked in the bag and there were no needles.  This medication must be injected.  Hmmm...so I call the pharmacy and they say, "the needles weren't part of the prescription, we'll need to call the doctor for authorization."  Really?  I may be off base here, but wouldn't it be common sense to think about calling me or the doctor to find out if we have needles before letting me know the prescription is ready?  A week later, I finally get the needles.  I went to pick them up and the pharmacist heard my last name and looked up and said, "oh, now I know who you are! I've heard your name so many times."  I said, "well, that's good because I'm here about every other day!" Then she says, "the prescription was okayed for a year's worth of needles, so there shouldn't be any more problems."  Good to know!  I'm hoping we will never need the year's supply as this is an emergency thing only!   

At least now I don't have to worry quite as much that something may happen at school and it could have serious consequences for Aly.  I've also learned, through this ordeal, that paramedics are not allowed to administer this drug.  It could have dire consequences for someone like Aly if it is not administered in a certain period of time.  I don't get it!  

Happy New Year! May this year be better than the last!

Have you ever wondered why memories of tragic events or hard times stick with you more than happy occasions and why those tragic events bring out the best in people?  We joined friends, last night, for a new year's eve party and we were reviewing this past year and talking about how Aly's illness and treatments went by so quickly and at the same time it seemed like forever.  Our friend, Pete, asked about specific dates of when Aly was diagnosed and when she had her brain tumor surgery.  I didn't even have to think about it before I had the answers.  I was off a little on the diagnosis date.  I said March 31st but that was when she entered the hospital for her first chemo treatment and stomach tube placement.  The diagnosis date was March 28th.  It all moved so quickly when I think that not even a full 3 days passed between diagnosis and the start of our journey.  It seemed like a really bad April Fool's joke which we thought would never end.  Aly spent all but 6 days of April in the hospital.  That was just the beginning of a 6 month roller coaster ride that had us feeling very positive at some points and very scared at others.  When I reflect on that 6 months, some of it is just a blur other times are crystal clear.  August 8th was the surgery to remove her tumor.  Just days before, we had received the results of an MRI and CT scan which showed spots that were unexplainable.  We thought we may be losing our little girl as they were thinking the cancer had spread even during chemo.  Thank God that it wasn't new growth.  Through the surgery, they found that it was areas of bleeding which ended up healing.  If we fast forward to where we are now, it is amazing that Aly is here with us and there are no signs of cancer.  We still have challenges to overcome, but we are so very thankful that the future looks so much brighter than it did not so long ago.
This new year will bring nervousness as we tackle one MRI at a time hoping that the cancer stays away.  It will bring growth hormone therapy for Aly.  Her pituitary gland does not function and will no longer function, so the growth hormones will get her through puberty and the growth that comes along with that.  She will, forever, take hormone replacements to make up for what her pituitary does not make.
This year will also bring an above ground pool to our back yard which was Aly's Make a Wish wish.  She is looking forward to that!  Aly is also hoping to get back on the swim team.  She is hoping to start back this week.  That is her goal and I hope her energy level cooperates enough to let it happen.  I have been waiting for her to tell me she wants to swim.  Just last week, she said she wanted to give it a go after Christmas break.       
All we wish for is that this year will be better than the last!  We hope the same for all of you as well.  Happy New Year!