Aly and I had some fun on this beautiful November day!  55 and sunny!  Nice!  CONGRATULATIONS ALYONA!

Celebrations

November is a busy month of celebrations.  It seems a lot of family members and friends have birthdays. We also, of course, have Thanksgiving and we have added a new celebration.  Last November 17th, Alyona had her first MRI after completing cancer treatments.  It was the first clear MRI and she was deemed by doctors to be cancer free.  So, we've added a special anniversary date to our calendar.  Aly was surprised that I remember the actual date.  Well, honestly it is not hard to forget considering it came the day after my birthday, but it is also because it was a blessing to hear the words that there was no cancer to be found.  It ranks up there with other life changing events.  It was a life changing event!  It meant the road back to some normalcy for all of us.
I tried to come up with something special to celebrate this date.  I found a couple of cute survivor items that I ordered for her.  I was so upset that the t-shirt I ordered came, today, and it was way too small!  I ordered a size larger than what Aly normally wears and this one looks like it is 2 sizes smaller!  So,  I'll have to exchange it.  I'm disappointed.  I know Aly, the understanding heart, will say, "oh, that's ok," but it will bug me!  It also bugs me that the other item won't arrive until Monday!  One of these days I will learn to plan better and do things further ahead so I don't run into this situation.  We'll have to do something fun tomorrow.  She is also planning to have a new friend over to play.  Aly has been part of a girl's group at school.  The girls work on social interactions.  This new friend is also in the group with Aly.  I'm hoping a nice friendship will grow from it.
Today, was my birthday.  It was a good day.  Aly took extra steps to make sure I was happy.  She is so giving and tries so hard to please.  She called Kevin to tell him to pick up birthday napkins.  She also texted Tom to remind him it was my birthday, but he remembered on his own.  She texted a couple of others I had not heard from and hinted that it was the 16th.  Too funny.   I also learned that when she and I went to our favorite antique shop, she bought me something on the sly.  I had gone upstairs and she said she was going to stay downstairs and buy a sucker.  She did buy a sucker but she also bought a Mickey Mouse watch for me.  I didn't even know!  I was blessed with all the greetings and well wishes I received today.  Kevin and Aly took me out for dinner and to a new cupcake store in Maple Grove.  Kevin brought home a headband that had a large cupcake with a candle on top.  I was instructed that I had to wear it to dinner.  That was embarrassing, but Aly enjoyed it, so I went with it.  Many eyes followed me as I walked though the restaurant.  One person actually said,"Happy Birthday!".  As we sat down, Aly said, "Did you see all those eyes following you?  That is what it is like when I use my cane or when you are bald."  It is so hard to hear these types of things.  Oh, I'm well aware of those eyes staring at Aly.  I see them all the time.  I constantly bit my tongue for fear of saying,"what are you looking at?"  It amazes me, in this day and age that there is still a stigma attached to people who look different or have disabilities.  Like everything else, I hope that this only makes Aly stronger and makes her even more of an advocate for others.  She is such a caring individual, constantly thinking about others, wanting them to be happy, wanting to help and take care of others.  She is a true gift...

Aly continues to have the jaw locks, but they are now only happening when she eats.  She hasn't had any, recently, during swim practice or flute practicing.  So, maybe the Botox helped in some way but not totally?  Maybe there were 2 spots acting up and it helped one but not the other?  Or maybe they will somehow go away the same way they came.  She also said she didn't have any while she was away on the three day school field trip, but then had them again upon returning home.  Maybe it is less stress that makes them go away?  I don't get it. The doctor suggested we wait a couple of months and try the Botox again at a higher dosage.  It'd be nice if they just disappeared.  Keep hoping and praying....

November...ALREADY??

Wow, well...as usual I'm struggling to find time to get on my blog.  Seems like I'm at work, coming home and getting on the phone, then it is dinner prep, then evening activities!  Everyday, I feel like I am still making calls in regards to something about Aly.  Doctors, school, whatever it is, one call typically turns into 2 or 3.  Never an easy answer, never an immediate yes.  I wonder if this is what it will be like always, or if at some point some things will change???

Today, Aly headed on a 3 day school field trip to Long Lake Conservation Center.  Tom had the same trip when he was in 6th grade.  It must be a good one or I don't think they'd continue to do it.  I'm worried that Aly will be ok out in the woods.  I wish I didn't have to worry, but one thing could lead to another and yep, I just worry.  They return on Friday afternoon.  At least winter has held off for these days.  It is supposed to be in the 50's for the next couple of days and Saturday may be even warmer, but I just heard that thunderstorms are coming Saturday which may turn our weather to snow on Sunday.  Just gotta love Minnesota and the roller coaster weather.

I will admit I am taking full advantage of being kid free for the next couple of days.  I'm getting caught up on Jayne time.  Today, it was a mammogram and haircut.  Tomorrow, maybe some shopping or something fun.  Tonight, it is dinner out with my hubby.

Next week, on the 17th, will be the anniversary of Aly's first CLEAR MRI and the lumber puncture which showed no cancer in her system!  I'll have to come up with something special I think!  I just scheduled Aly's next MRI for December 4th.  If this is clear, she will only have to go through 2 MRI's next year!  Maybe that will help slow a few things down!

The jaw locks continue.  Aly is still having several everyday, although she did not have any during her last swim practice on Monday.  So, maybe the Botox is working to a certain degree, but not totally.  The doctor's suggestion is to wait a couple of months and then try again with a stronger dose.  I am still waiting to hear the opinion of the neurologist.  She is the one who suggested the Botox.  We'll wait and make a decision until then.  We also got the neuro. pscyh. report we've been waiting for since the end of July.  We were expecting pretty normal results as the doctor said about that much as we were leaving the appointment, but one interesting thing did come out of it.  The treatments have caused dexterity issues.  Aly's finger dexterity has been "significantly impaired."  I'm not sure why this is or what part of the treatment would cause this, or if the tumor itself was the cause and like everything else, I'm not sure I'd get an answer from anyone.  It is just another issue to tackle.  The doctor suggested we include that in Aly's education plan, so she is not marked down, in grades, for slowness.  She said it would affect things such as typing skills and playing an instrument.  Aly plays the flute.  She actually has been struggling a bit, especially on faster songs.  It has been a point of frustration for her, and to have an actual reason why is actually a relief in a way.  I told Aly about this finding and she was actually happy to hear it.  She knows, now, that there is a reason for the struggle but at the same time, it is something else that she has to put extra effort and practice into if she wants to continue.

I just keep praying that somehow things will get easier for her....