Happy Memorial Day!

Thank you to my faithful followers that took the extra time to send me a picture and show your support of Brain Cancer Awareness Month.  Please know that I appreciate your time and effort and it is comforting to know you are in our corner!

I hope that more will come in before the end of the month.  I would REALLY like to see more!  I must say I am surprised that so few have come in, in this age of social media and how easy it is to take, download, and send pictures.  

I've been feeling like an emotional mess lately.  I feel like I've been searching for the next chapter and what I'm supposed to do with my life.  I feel like there is something I am supposed to do, but I can't put my finger on it.  I've been praying and asking for answers.  Although, I don't feel like I've gotten a straight answer yet, I think it is coming in some form.  I keep hearing, "help people."  For me, the introvert, I'm not sure what that entails.  I keep thinking about how one person, like me, with limited finances, with limited contacts and connections, "what can I do to help people."  

I am going to take time to see if I can figure this out.  I am also going to put together a book that will combine my blog and pictures I've taken along this journey of helping Aly through cancer.  Maybe, that is my way of helping, bring the knowledge and experience to others.  I also see others starting foundations, and here again, I'd like to do that, but I'm not sure how to do that.  I think brain cancer needs more attention.  I'd like to see it get the attention that breast cancer gets.  We need better treatment options.  Of all the cancers, I believe brain cancer/tumors leave behind the most damaging after effects and life long issues.  

Anyways, this is my way of saying, I'm going to take time away from the blog.  Even though I know it is a good communication tool and a way to get, how Aly is doing, out there, it is also become isolation in a way.  Although I am aware that we live in a new age where people get a majority of information off the internet and other types of electronic devices, I have found that my blog shuts down the personal communication line.  It is difficult to share this journey and not get feedback, words of encouragement, a listening ear when necessary.  It has, except for a faithful handful of people, been a one way communication road.  So, I need to let it go for a while.  My love and gratitude goes to everyone who's helped us through to this point.  The journey and battle continues on!  Our email is listed above, there is still a Rally 4 Aly Facebook page which I will continue to post Aly's schedule and events on and also continue to try to raise awareness on.        

Thank you for following Aly's story, and my blog....yours truly!  

Showing that Grey Matters!  :)

A CHALLENGE TO YOU...

As May winds down and we move on to June, I have a challenge for you all...

Aly did not get to have her "Grey Day" at school, due to the challenges of the process of getting things approved, so I am going to challenge ALL OF YOU to put something grey on, take a picture and post it on the Rally 4 Aly Facebook page.  If you still have your Rally for Aly shirt, that will work too!

Please show your support for Aly, for our family, for ALL kids and adults who are having challenges EVERY DAY caused by Brain Cancer and/or Brain Tumors.

It doesn't take much.  All of you, with your smart phones, take a pic and send it in an email to the Rally 4 Aly Facebook page, or email it to our family's email which is listed at the top of the Blog page.  I will post on this blog and share on Facebook as well.

Please share with your family members, and friends.  We'd love to "see" your support for Brain Cancer Awareness Month!...and it doesn't cost a thing!  :)


THANK YOU!!!!!

Reflections

I hope all you Moms had a great mother's day yesterday.  For me, it seemed to be a day of reflection.  I had a good day.  It is hard not to, when my wonderful daughter worked so hard to make it such a great day for me!  She made me earrings and a bracelet.  She drew the wonderful artwork (above) on our driveway.  She worked secretly, with Kevin, to order a necklace I really wanted.  I was doing dinner dishes (which weren't many because we grilled) and she told me to go sit down because I wasn't supposed to do that on Mother's Day!  I know I've said it before, but she is so caring and giving and always wants to please.  Kevin made scrambled eggs for breakfast and went out and picked up some donuts.  Then Kevin and Aly took me shopping for some flowers for my flower pots.  We worked on getting Aly's pool ready for summer and ended the evening with burgers on the grill.  It was a lovely day.

It was also a day of reflection.  We received an email, from Hope Kids, with a note and prayer for moms.  We just signed up to be a part of Hope Kids.  It is a group for kids who are or were going through health issues such as cancer.  They set up activities for the child and their siblings and parents to take part in.  It is also a chance to meet other families going through similar experiences.  They always have a number of activities that we can attend.  We haven't attended any quite yet, but Kevin and Tom are going to attend a Twin's game tomorrow...Anyways, the note talked about how, for some moms, it may be a difficult day as they may have experienced the loss of a child.  I am so very grateful that Aly made it through her cancer experience, but I also thought a lot about those moms who have lost their child, not only from cancer, but from other types of losses as well.  It has been hard to watch the local news lately.  There are so many families still dealing with grief, still dealing with a child who currently is battling cancer.  For them, it is hard to celebrate and enjoy Mother's Day.  I said a prayer for those moms that are hurting, hoping they may find peace and healing.

I couldn't stop thinking about my kids growing up and how fast the time goes either.  Aly caught me getting teary eyed a couple of times.  Aly had also dug in our "office" and found creations they had made, from previous years, for Mother's Day.  I save them!  Anyways, she had spread them out on the dining table.  There was one, that Kevin had put together, that had a picture of Tom and of Aly when they were younger.  There was a picture of Tom when he was about 4 and a different picture of Aly when she was about 6 or 7 I think.  They both looked so happy and healthy.  It just brought back such good memories.  It just made me yearn for those days.  It's been hard for me to see Tom become an adult, be away at school, and see that it seems so easy for him to separate himself from us.  I don't know if it is harder because cancer makes you want to hold your kids closer and not want to let them go??  It's just been hard.  It doesn't help that he didn't really seem to remember that it was Mother's Day!  Granted he had to work most of the day, but I had to pretty much beg him to spend an hour with me...I teased him that his girlfriend texted me, right away in the morning, wishing me a Happy Mother's Day.  I'm hoping Aly will take a long time to lose the desire to want to hang out with me!  :)

Anyways, things have been going smoothly, otherwise...knock on wood.  We had a good, fast trip to Nebraska to pick Tom up from school.  The weather was awful.  Nebraska greeted us with rain, that turned to freezing rain overnight.  Our return was the day after Iowa and Southern MN was dumped on with snow.  Our drive home was messy!  It must've been really bad overnight because there were dozens of cars and semi's in the ditches.  We had rain mixed with snow the whole way home.  Aly and I were in Kevin's truck and the boys were in Tom's car.  We got about 30 minutes outside of Lincoln and  I thought about Aly's growth hormone medication.  It has to be refrigerated and I didn't remember seeing Aly pack it back up.  Why I couldn't have thought of that before we left the hotel is beyond me!! So, Aly and I turned around and went back.  The boys continued on.  It was not exactly fun to add the extra hour onto the messy drive, but we made it home safely.  As soon as we hit Northfield, MN, the snow was no more.

Aly has been doing good.  It seems the jaw locks have been decreasing.  I'm praying that they are going away!  She's been getting the hiccups a lot.  I think that radiation really messes with the nerves.  I'm sticking to that theory, because the doctors have no clue.  If you remember, Aly had the episodes where all the muscles, on one side of her face, would tighten up.  That went away, then it was the jaw locks, and now it is hiccups.  Maybe it just needs time to settle down and normalize?
We have a day long session set up, at the hospital, on June 11.  They are starting a new system where you make one appointment and all the doctors come to see you!  It makes for a long day, but I think it will work great to see everyone at once and maybe it will help to get everyone on the same page.  She will start the day with her 2 hour MRI of brain and spine.  Then she'll see her cancer doctor, the neurologist and physical therapist.  She will also have a hearing exam and echocardiogram.  The chemo she had, sometimes causes issues with hearing and other things.  So far, everything has been good.  Again...knock on wood.

Aly has had a good week at school.  She was elected to the Executive Student Council!  This means that she will be on student council through 8th grade.  She will not have to "run" for the next 2 years, which will finish off her middle school career.  She was super excited!  I believe she is going to be an unbelievable leader as she gets older!  Today, she talked to one of her teachers to see if they could have a "grey day" at school.  As I mentioned, May is Brain Cancer Awareness Month.  She talked to me, on Friday, and said she'd, "really like to raise more awareness about brain cancer, because not a lot of kids are aware that it is Brain Cancer Month."  I told her that is a great idea, and asked if she wanted me to help.  She said she wanted to handle it herself, so kudos to her!  She came home, today, and said there are steps involved to make it happen, which may take awhile, so they are not sure if it will happen in time for May.  I hope it does!  She REALLY wants to make it happen...THINK GREY...YOUR GREY MATTERS!  :)

      

Grey Matters in May!

We can finally consider it spring.  We had our first day of 70 degrees on Friday and another today!  Oh, that felt wonderful!  It's been a very long winter.  Last year, at this time, we'd already had many warm days and Aly's pool was being installed.  This year, we don't even have the cover off yet.  It sounds like the 70 degree days are going to change into cold days, once again, this week.  We were hoping that a couple of days driving to  Lincoln, NE and back would keep us in the warmth, but it sounds like NE is also going to cool down.  We are going to pick up Tom, from college, on Wednesday and coming back Thursday.  Nothing like 2 days in the car!  He has completed year one.  I can't believe how that flew by.  Like all new college students he experienced some ups and some downs, but for the most part it seemed to go good.  I think it is hard to go wrong when you are studying something you love and are required to play in golf tournaments as part of your program!  He will return home and quickly start working at Medina Golf Club next Monday.  Also, a part of his program is an internship at a golf course, every summer!  Again, there should be no complaining there!

Moving on to May...May is BRAIN CANCER AWARENESS MONTH.  I am still in the process of raising funds for the Pediatric Brain Tumor Foundation's, Ride for Kids that will take place in July.  My goal is $500, not much when looking at the great scheme of things.  Please consider donating.  No donation is too small, if you can spare a single dollar, I'd appreciate it.  Here is the link to the donations page I have set up.  (Thank you to those who have already made contributions!!!)  

http://pbtf.convio.net/site/TR/2013RideforKids/General?px=1186085&pg=personal&fr_id=1220#.UXyEGxwRQY5

With the change of seasons, Aly has come down with either a cold or seasonal allergies.  She was feeling a bit miserable and stuffed up today.  Her mood has also been a challenge.  She is still feeling down in the dumps about friends.  She had a great time on her birthday.  She took a couple of new friends to a place where you can paint resin figures and we also went out for dinner.  The following week she had time with her cousins and aunts.  She's also had time with another new friend, some neighbor friends and she's reconnected with another girl, whom we met through cancer.  She is back on the swim team with Aly and they chat a lot during swimming.  It is nice to see, and I hope they can continue to get reconnected and talking.  Even with these events, she has her moments of sadness and worries that kids are trying to avoid her.  Sometimes, I can see why she feels that way, but other times she needs reminding that she's had time with friends and I keep pushing her to call the newer friends. Today, I was doing some spring cleaning and she came and sat down in the kitchen.  She was clutching her favorite monkey, Tiny, and she had this sad expression on her face.  It was obvious she was upset, so I asked what was wrong.  First, it was "nothing", then it was, "I don't know" (several times), and finally, as I was ready to give up asking, she says, "I feel like kids are avoiding me."  This after she had spent a couple of hours talking and hanging out with a couple of neighbor girls.  They had other things going on, so Aly was left on her own later in the day, and there was really no one else home today.  Sometimes, she is set by the boundaries of the neighborhood and doesn't think of picking up the phone.  The new friends are not that far away and can be picked up in a short time.  She just forgets to think outside the box sometimes.  Other times I think she worries, now, that she is going to do something to make these friends go away.  She still needs time to get over what happened recently.  It is still a fresh memory so it seems.

I hate seeing the worry and frustration.  I'm feeling like a failure, like I'm not doing all that I can to help her and keep her happy.  She is busy.  She has something going on every day of the week, but somehow all she keeps seeing is the quiet times when she is alone.  Me, being the major introvert, I like and cherish my alone time, so it is not easy for me to always sympathize.  I have dug every pre-teen/teenage problematic story out of my own life to give comparisons to her.  It is not an easy time for any kid.  I just wish I could figure out how to make it easier for her...    

HAPPY BIRTHDAY!!!!

Aly is turning 12 on Thursday, April 11!  Happy Birthday to my sweet, courageous, hopeful, strong, super girl.  Your are a special girl, with an amazing spirit.  I hope that you have a great, great birthday.  My wish, for you, is to be happy.  Be happy with who you are, be happy with the traits that God gave you and use them to the best of your ability.  When life gets you down, remember how strong you've become and the courage it has taken for you to get through the tough times in the past, present and continue to use courage in the future.  I love you with all my heart!

 Happy Birthday Alyona!


I'm sorry I haven't written lately...it's been a tough couple of weeks.  It has nothing to do with Aly's health, she is doing good, health wise.  Emotionally, it's been tough.  Without going into specifics, and to respect privacy, I will just basically say it continues to be the friend thing.  She's had to let go of a friendship that's meant the world to her, through the cancer ordeal, but that friendship has been strained and seems to be no longer mendable.  It's truly unfortunate that it's come to the breaking point right in time for her birthday.  Sometimes I think she is going to start hating her birthday because bad things seem to happen around her birthday.  It was shortly before her birthday that she got her cancer diagnosis...This is just really bad timing.  Not only has it hurt Aly, it has hurt me as well, and I'm not understanding the actions of some.  Even though the cancer is gone, the healing process continues and will continue for quite some time and may never be completed.  I can only say that I would not wish cancer and the effects it has on those surrounding it, on my worst enemy.  Don't get me wrong, here,  we have had great support from family, friends and the community we live in.  That's not what I'm trying to say.  However,  we have found out how scared people are to communicate emotionally and honestly through a crisis like cancer.  They don't want to place any more burden on an already delicate situation.  As an adult, although it hurts, I can process it, make sense of it, begin to let go of it.  As a child, it doesn't make any sense.  It is just another reason to continue to isolate yourself.  It does bad things to the self-esteem.  It makes you wonder what is wrong with you.  That is what has been happening lately.
As a parent, all I can do is to continue to emphasis the good, start to try to steer in a different direction, focus on the positive, try not to show too much emotion and pile on all the parental type sayings, like, "if one door closes, another is going to open" or "sometimes if you are holding on too tight, you can't see what's waiting for you."  I've signed Aly up for many activities this summer.  A kids club at her middle school for June.  A camp for kids who have/or have had cancer in July, and a YMCA camp, to build leadership skills, in August.  I can only pray that she will make connections with new kids who will understand and build confidence.

Aly is in a girl's group, at school.  She's started to make friends with a couple of girls and has invited both to come to do a fun activity and eat out, on Friday, to celebrate her birthday.  I am going to try to foster these friendships, over the summer as well.  She also JUST got an unexpected phone call to play.  It is amazing how one little thing like that can change the world of a kid!  We'll see how these activities go...

Aly had her semi-annual eye exam with the eye specialist.  Her eyes remain stable.  He said her eye nerves are functioning the way they should, something about fluid draining properly, and although the nerves were damaged beyond repair and she will not regain the sight lost, they are stable and look good.  He also said Aly's eyes are working better together.  I'm not an expert, so I can't say what he really meant by this.  Aly has a tiny spot in the upper right eye, that she can see out of, if her left is closed.  She has to turn her head at odd angles to be able to see out of this spot, but what she can see was clearer than it was.  Unfortunately, it is really not helpful information because it is near impossible for her to find what she's looking at, with that eye alone.
After the appointment, we stopped and picked out new eyeglass frames and also ordered some prescription sunglasses.  She's had the transition lenses, but they do not give good protection, especially when riding in the car so we're going to try glasses and sunglasses.
Her health also remains stable.  She is due for an MRI in June.  The jaw locks are still on and off.  The hormone dosage still going good.  We are waiting for lab results of a blood test, to check levels, that was taken last Friday.    

Other than that, us Minnesotans are bracing for what is supposed to end in 8 inches of snow tonight and over the course of tomorrow.  The barometric pressure is haywire (I can tell by my headache).  The winds have been howling and the precipitation, which currently sounds like sleet, has just started.  Maybe Aly will get a snow day birthday!  Yeah, that stinks in mid-April! A better treat would be a string of hot days so we could open up her pool and swim!  As long asthe snow doesn't affect our birthday plans!

Thanks for checking in!  If you feel like it...please comment on the post and wish Aly a happy birthday!

Those were the days...

Hi All!

Is spring EVER going to get here?  We all want to get out on the golf course!  The snow needs to melt faster!  It is spring break, this week, for Aly.  Unfortunately, we don't have any fun or exciting plans.  Kevin and I are taking a few days off to try to fill some of Aly's time off.  It sounds like it will finally reach 50 degrees on Friday, so we'll have to find something to do.  Maybe go to a drive to Stillwater for shopping and lunch?  Something to get away for a short time.  I'm taking tomorrow off and am planning to take Aly and a friend to Mall of America for some ride time!  Aly loves the rides, especially roller coasters.  She is the dare devil of the family.  She is looking forward to it.  I've reached the point where I just get dizzy and start feeling sick, so it's not much fun anymore!  Stinks, getting older!

Speaking of getting older, Aly's birthday is coming up on April 11th. She will be 12 this year!   I'm busy searching for gifts.  She's a tough one to buy for.  She has received many nice gifts through her cancer experience, all the gadgets a preteen likes, so we usually have to come up with something creative.  I'll have to keep working on that!

Aly continues to have her ups and downs.  I wish I could wave a magic wand every time she gets down.  Last week, it was the friend thing again.  This time, she came home from school, one day, and told me she feels like the third wheel in two groups of girls.  There are 2 girls, whom she's friends with, and they both have other close girl friends, and Aly was feeling left out, saying how each of the groups are doing fun things and she "never" hears about what they are doing until after it has already happened.  I think most of us have experienced that at one time or another.  It is hard being a middle schooler.  This weekend went better as some neighbor friends came over to play.  She had a good time.  At one point the girls were sitting in our guest room and I was on the computer, next door.  Aly had left the door open, for a change, so I was eavesdropping (a mom's right, right?).  Our house, and our next door neighbor's house have bedroom windows across from each other.  When Aly was a little younger, Aly had the, mentioned, bedroom.  She and her friend, next door, used to write messages, to each other, on a small white board, and communicate by showing the messages through the windows.  The girls were talking about that and one of them said, "those were the days!"  I got my laugh for the day.  They talked like they were old retirees or something.  It was cute.  Aly was in a great mood after that play day.  It made me happy to see she was happy.  Today, she was invited over to another friend's house and she has her date to go to MOA tomorrow, so all is currently good, in the friend world.

Aly has made it to the growth hormone dosage goal, without any issues.  Yes!  I'm knocking on wood again...I don't want to jinx her.  It seems I continue to do that.  I find it interesting that she's not having the same problems as she did last time, such as the jittery behavior and medication problems.  She's had a couple of days where things have been thrown off, but for the most part, it's been good other than the fact she is really sick of getting a shot every night.  We will have to have her blood drawn, soon, to check the hormone levels to see if they are where the doctor wants them to be, where Aly should see the most potential growth.  The jaw locks continue to be sporadic.  Last week, she had 2 days without ANY.  Then, of course, I ask about them, because I haven't seen her have any at home.  The next day, she has several.  Jinx!  It still boggles everyone.  How weird is it that they happen on the first bite of food or gum, and then don't happen again until the next meal?  Why the first bite?  Why is it happening at all?  Some days, she'll have none.  No rhyme or reason.

Finally, our family will be attending the Ride for Kids, put on by the Pediatric Brain Tumor Foundation, on July 21, in Vadnais Heights, MN.  Aly was out of town, with her grandparents, last year so she didn't get to ride, but we had a friend of the family ride, in the ride, on Aly's behalf.  This year, we will be in town, so Aly will be able to ride as well.  They find bikers with sidecars, so the kids can ride along.  The Pediatric Brain Tumor foundation does wonderful things to help families and kids. Besides medical research, for a cure, they give scholarships and so much more.  I have set up a fundraising site, in honor of Aly, if you are interested in donating to a very worthy cause.  Each day, 11 kids are diagnosed with a brain tumor of some kind.  Please consider donating in honor of Aly's survivorship and to help other kids and families like ours.  If anyone would like to register to ride, you are welcome to do that as well.  It is a fun event and awesome experience to see all the bikers take off in support of the kids. If you are a motorcycle enthusiast, it is cool to go and check out the variety of motorcycles.  Follow the link if you are interested in joining or donating.  Thank you!

http://pbtf.convio.net/site/TR/2013RideforKids/General?px=1186085&pg=personal&fr_id=1220#.UVIfeBwRQY5

Working!

I've had so much going on, the time has gotten away from me AGAIN!!   Sorry for the delay in posting!  I can't believe it is March 14th!  Goodwill is opening a new store in Maple Grove (a second one) and I am now working there.  I have been in the process of training my replacement at the old store and trying to get organized at the new store.  I have been working over 40 hours a week (my usual is 25 hours) doing both.  So, I've been feeling a bit overwhelmed.  I don't know how I ever worked 40 hours before (when Tom was younger and when I was younger! :)).  Kudos to you moms who do.  It is not easy!  The saving grace is that my fabulous mother was in town, visiting, and she kept me caught up at home doing dishes, laundry and keeping Aly busy!  Thank you Mom!  My pocket book also thanks you because I will get a nice paycheck tomorrow!
This week, things are slowing down.  The new store opens tomorrow.  They are having a preview sale from 4-7pm if you are interested.  You will need to buy a $7 ticket at the door.  Otherwise they open for usual business on Saturday.  It is off of Elm Creek Blvd by US Bank.
Ok, on to Aly...
Things are at a maintenance level.  Which is good.  Our busy day, of the week, is Thursday.  She has physical therapy and then we travel to Children's in Mpls.  for yoga.  Aly is really enjoying both.  Sister Kenny is a great place for kids!  Aly is doing all sorts of things.  I don't know how some of the exercises pertain to hand/arm strength, but it sure looks fun.  I guess it has to do with coordination and the therapist was explaining something about balance and middle ear function and getting the brain to work with the ears/eyes.  I don't know, but is somehow helping.  One thing Aly struggled with is spreading butter or peanut butter on bread.  They had her test her ability, at the clinic, last week and she did it great!  I am so happy that we found them after all the struggles of searching!
The yoga has been enjoyable for both of us.  It is not a strenuous yoga.  They focus on simple stretches and breathing.  It is so very relaxing.  I hate having to get in the car and drive home afterwards.  Kevin joined us this evening.  He was catching a bus, tonight, in Mpls., to go visit Tom, in Nebraska, so we dropped him off after yoga.  Tom has spring break this coming week, so Kevin is going down for an extended weekend and they will drive back here, together, on Tuesday.  They are hoping it will be warm enough to play some golf down there and Tom has a hockey game on Monday he wants to play in.
KNOCK ON WOOD, the increase in growth hormone dosage is not affecting Aly's sleep or medication to control the urine output.  What a relief!  Hopefully, this increase will give her the growth spurt we are all looking for.  She continues to have the stupid jaw locks.  Not any worse, not any better.  Just a consistent frustration, along with having to give herself a shot every night for the growth hormones.
Two Saturdays ago, Aly and I had a girl's day out with my sister (Aunt Jill).  Jill lives downtown Mpls. Aly and I drove to her place and from there Jill drove us to Uptown.  It was a lovely weather day, if you remember, nice and sunny and rather warm.  We had a blast shopping and having lunch with Jill.  We found some really cute things and really cute stores.  We happened upon a shop called Bobiam.  They feature, artwork, and clothing with artwork printed on it, all done by kids under 18.  It was very cool.  They also have art classes, yoga classes and some baking classes for kids.  Check them out if you are looking for something fun to do.  Aly found a really cute hat (pictured below).  You can't quite see it in totality, but it has a pinwheel knitted into the top.  I couldn't pass it up.  It fits Aly's personality so perfectly.  The shop had many knit hats done by a teenage girl.  She knits funny things into them.  Some had nerf darts sticking out, others had pastel Christmas type ornaments hanging down.  Just awesome.  We enjoyed a late lunch at the Uptown Diner, after shopping...very yummy food!  It was a good time had by all!  We are going to join Jill, this weekend for the new Wizard of Oz movie.  While the boys are away, the girls will play!  :)  Sounds like it will be a good weekend for a movie.  "Oh, the weather outside is frightful..."
Other than that, time keeps marching forward...very quickly!  I wish spring would come faster...it is so nice of the weather people to keep reminding us how warm it was last March.

Keep on Movin'

Another typical week has come and gone.  I am putting in extra hours at work, so I am behind on everything at home!

Tuesday was Endocrine doctor day.  Aly has grown almost an inch from the last visit, about 6 months ago.  She is still behind her peers in growth and the doctor would like to see some "catch up" growth, so we are supposed to increase her growth hormone dose.  If anyone remembers, when we did this originally, it threw off Aly's medication (desmopressin) that controls her urine output.  It also made her fidgety.  We increased it just slightly this week and are supposed to slowly increase in the upcoming weeks.  It seems to already be affecting her medication dose.  She was on a great schedule only needing to take her medication in the morning and evening.  Now, it doesn't seem to last as long and she's taking it right around dinner time.  We are having to adjust the dose, taking a third dose to get her closer to bed time so she doesn't wake during the night or very early a.m.  So, what is going to happen when we increase the growth hormone more?  Is it worse to not sleep and be tired or not grow and be short?  UGH!  I guess we'll figure that out as it gets more out of control.
Aly was also started on a very low dose of estrogen.  They try to mimic what a preteen girl would go through if she had a normal functioning pituitary gland.  They will slowly increase the doses as she gets older and get to the point where she is taking some form of birth control so she will get the hormones needed and have regular menstrual cycles.  Oh, joy!  When I went to pick up the prescription, I was told the pharmacist wanted to chat with me about the prescription.  She questioned me as to why a young girl would need to take estrogen, saying that it was very unusual.  I had to explain the situation to her and she's then like, "oh, that makes more sense then."
Thursday was physical therapy day and yoga day.  In my last post, I was happy to have found Sister Kenny and how they had an office right in Albertville.  Well, of course, as soon as I posted that, I got a call from them and some things had changed.  First, they had to cancel the prior week's appointment because our insurance company was slow to respond for coverage.  Then, the therapist we had met with the week before said she was going to turn Aly's case over to another therapist who she thought could better assist Aly.  So, now we are required to drive to Buffalo every Thursday as this person does not come over to the Albertville office.  It is, at least, still closer than going down to the cities I guess.  So, we shuffled off to Buffalo for Aly's appointment on Thursday afternoon.  It will be at 3:30 every Thursday, which I am also glad for as Aly will only miss about 10 minutes of the school day.  Because we were seeing someone new, Aly had to do some additional testing before starting the actual therapy.  I am hoping this week, she will FINALLY start the actual physical therapy.  I am still happy with the clinic and am happy we found someone to help!
Thursday night we traveled down to Children's for the first yoga session.  That is going to be quite a haul every Thursday night, for 8 weeks, but I think it will be worth it.  She didn't really get to know any of the kids yet.  I think they need a little ice breaker.  There are 2 girls that seemed to be about Aly's age.  One was not feeling good and didn't really participate.  She kind of sat and watched.  The other seemed quiet and shy.  There are also 2 teenage boys, both older than Aly.  So, a total of 5 kids.  I'm not sure if that is the whole group or not.  All the kids brought one parent along who can also join in on the yoga.  It was a nice evening.  The yoga instructor said she was going to start slow and increase the activity as we go along.  This night she mainly focused on relaxation and breathing.  It was so relaxing, one of the boys fell asleep!  Aly said she really liked the yoga.  They also gave us a DVD to do at home twice a week.  We went out to do some errands, this weekend, and Aly and I found a couple of inexpensive yoga mats at Marshall's, so she's excited to keep doing it.  I think it will be a good stress reliever for her.  Since the yoga is part of a clinical study, they have questionnaires for the kids to fill out, mainly with questions relating to sleep habits and stress.  We went down, a couple of weeks ago, to fill out the initial questionnaire and then they did it again on Thursday night.  We will also have to fill it out again, midway through the classes and at the end.  This questionnaire asks the kids to reflect on the past week and it goes through a list of choices, such as "are you nervous or not nervous" and "are you upset or not upset", both times we have done them, Aly has answered that she is upset and nervous.  So I discussed these findings, with her, on the way home.  She said, "well, it said to think about the past week and then answer.  I have been nervous and upset at some point in the last week.  Like, I was upset that I didn't do as well on a test that I thought I did good on."  Well, I guess I'm glad that's what the answers were about.  I guess as an adult, I would answer that question differently.  Just because you had one or two upset moments throughout the week, would you answer that question as being upset or not upset when reflecting on the week?   It just seemed odd, because there were also things like calm or not calm and happy or not happy and those were answered as calm and happy.  Sometimes I think I should've gone to school for psychology because I'd really like to know more about how minds work.
Anyways, I am feeling more calm because some more things have been crossed of the list of things to do for Aly.  Not quite as much time spent on the phone lately.  That is a bonus!
Aly is looking forward to "Snow Week" at school.  They have different days to dress up.  One day is dressing up as something that ends in er.  She decided on painter (after discussing many things that end in er), so we went to Goodwill and struck it lucky on finding a pair of painter paint type jeans that fit her.  We are going to have some fun throwing some paint on them, as well as a t-shirt, and she's going to stick some paint brushes in the pockets.  Should be cute!
Aly also had some fun in the snow outside today.  It is mild, about 30 and the snow is melting and making for perfect snow fort weather again.  She and Kevin did some more work on the fort started last week...this looks fun, but I am wanting spring so very badly!

Happy Valentine's Day!

Just wanted to check in and say, "HI!"
Things, as in phone calls and appointments, seem to finally be slowing down.  We have found, what seems to be, a good physical therapist at Sister Kinney and they have an office, right close, in Albertville!  SCORE!  Other things going on:

• Aly had her last swim team practice of the season.  It will start again in April.  
• Aly starts yoga class, on Thursdays, as part of a clinical study of cancer kids, to see if yoga helps kids recovering from cancer regain their strength and flexibility.  Of course, it means a drive to Minneapolis every Thursday night, but I'm hoping she will meet and get to know some other kids recovering from cancer.
• Aly is taking guitar lessons on Tuesday evenings.  I'm hoping this may help with her dexterity, and she's been wanting to get back to learning guitar.  She had just started lessons when the cancer diagnosis came at us.  
• The Botox is not helping the jaw locks.  She is still having them a few times a day and also while exercising still.  They want to continue to increase the Botox dosage, but Aly doesn't want to.  I don't blame her, it is not helping and each time means going to the hospital, sniffing nitrous (laughing gas) and being poked in the face with a needle.  She doesn't remember the pain due to the gas, but it is still not a fun experience.  They still can't come up with what exactly is causing them.  I wish they'd just go away, the same way the started!
• Aly meets with the Endocrine (hormone) doc on Tuesday.  Just a check in to see how she's doing  on height and weight to determine if the growth hormones are doing what they are supposed to.  
• This weekend's snow brought the kids out to play.  It was nice to see Aly out enjoying the snow with the girls.  It's been a while!  Everyone is so busy during the winter or hibernating from the cold.  It was a rather warm snow fall, perfect for snowmen and snow forts! 
• Aly is looking forward to having a birthday sleepover at a friend's tomorrow. She is supposed to dress up like she's going to prom and also bring another outfit of her choice (she chose rock star).  Sounds like fun to me!  She also had a play date last weekend, so things are looking up!

That's about it from here!  Hope you all are doing good!  

Just Another Day in the Life...

Ah, yes a 2 hour late start.  Gotta love the 5:30am wake up call to let us know the kids don't need to be at school until 10!  Who can go back to sleep after that?

Our saga of finding physical therapy for Aly continues.  I don't get why this is so hard!  After not finding anyone, nearby, I called Health Partners to see if they could help.  They directed us to Phenomenal Rehabilitation which is right here in St. Michael.  I called and asked if they work with kids and told them what we were looking for, occupational therapy for hand and arm weakness.  They said, "oh yes, we can do that."  I was thinking, "thank God, I've finally found someone and they have available appointments right away!"  Well, no, not so fast.  I took Aly to the appointment, yesterday.  We get there, spend about 10 minutes filling out questionnaires and medical history paperwork.  The therapist comes out and introduces herself and brings us back into a room.  She proceeds to ask why we are there and what kind of treatment Aly is looking for.  I explained that she has dexterity issues, both speed and strength.  She then tells us, "well, I am going to be honest with you.  My expertise is in shoulder problems.  I could help treat Aly, but I think you'd be better off going to an Occupational Therapist."  UGGGHHHH!  I told her that is what I requested when I made the appointment and they had told us, "yes, we do that."  To which she replies, "well, they (meaning the receptionist) sometimes don't know the difference."  Again, UGGGHHHH!  So, another wasted afternoon of getting Aly out of school early, only to accomplish nothing!  This clinic directed us to Sister Kenny, so we will try again on Wednesday!
Aly and I were both frustrated.  When we got home,  Aly proceeds to say to me, "I wish I could have a week where I didn't have to be me....no appointments, no shots."  What do you say to that?  I happened to be at the computer, searching for more info on low vision services and ok, also checking Facebook.  I came across a video that a relative had posted.  It was about a couple who have adopted several special needs kids from across the globe.  I said to Aly, "I know it's hard Aly, but you have to remain positive, because things could be worse.  You are healthy and can function normally."  I told her I had just watched this video about adoption and then we watched it together.  It was very heartwarming and wonderfully done.  This couple had adopted a couple of boys with no arms.  It showed how one boy learned to play the piano with his toes.  This boy was adopted from Romania.  He told his story, that in Romania, when you are born with a deformity, it is considered a curse from God, so he was cast aside and not given the care needed.  He said he weighed 9 lbs when he was 1 year old!   The other boy was shown getting into a special equipped van that he could drive with his feet.  It was amazing.  It spoke about how children can grow and flourish with a little unconditional love.  It also spoke about how special adoption is, that when you are adopted, you are chosen from many in the world.  I am paraphrasing, and not saying it as special as it sounded, but I loved the message and I think Aly got it too.
I hope that we will reach a point where there are less appointments, less frustration.  It is not easy, especially when we've been wasting so much time!  I left messages, for a few people, last Wednesday and just got return calls yesterday.  I also asked Health Partners about low vision services.  They had no clue of where I could find services and the woman also said that they wouldn't cover those costs anyways.  They don't cover the cost of a white cane.  That is another thing I don't get.  How do health insurance companies not cover glasses, eye exams, or really anything to do with eye care?  We've always had to pay out of pocket for glasses and such.  Aren't they a necessity to function?
We are still waiting to see how the Botox is performing.  It seems to have helped, at this point.  Aly had a couple of jaw locks (which is an improvement) over the weekend, but NONE yesterday.  I hope it continues!  Last time she had it done, the Dr. said it takes about a week to see the full effect, so we'll patiently wait, but so far so good.  

Awesome, Awesome, Awesome

Funny...I just finished typing the title of this post, and my mother called.  She said she texted Aly and asked her how the basketball event was, and Aly texted a one word answer back, "Awesome."  

It was an awesome event put on by the girls' basketball team, coaches and booster club on Tuesday night.  We cannot thank you, all, enough for letting us participate in your cancer awareness event.  It is wonderful that you choose to do an event, such as this, and keep it local.  We are truly blessed to be part of such a great community.  The saying, on the back of the t-shirts said, "finding a cure, starts with awareness."  This is so very true, and that is the best message to share.  Thank you, to everyone, who attended and showed their support for Aly and Tyler.  It was amazing.

To start things off, Aly and Tyler got to join both teams for a picture.  Then they were included in the starting line up and got to give all the players high fives.  Aly and Tyler were also brought to center court and a little of their stories were told.  They were greeted, by the crowd, with a standing ovation for their personal fights against cancer.  It was so cool and so moving to see the support.  

During halftime, Aly and Tyler participated in drawing names for the winners of the raffle items.  The first name to be called was Aly's social studies teacher, Mrs. Autio.  Mrs. Autio was one of a few people who was wearing a Rally for Aly t-shirt.  That was perfect!  Congrats Mrs. Autio and thanks for  wearing the Rally shirt!  Thank you to Mrs. Kelly, as well, for the special t-shirt combo she had on!  She had Tyler's T-Sizzle shirt and Aly's Rally shirt sewn together, so she had T-Sizzle in the front and Rally in the back.  Way to rock it Mrs. Kelly!  :)  

At the end of the game, both teams, coaches and Aly and Tyler joined hands, at center court, for a prayer.  They included the kids' fight in the prayer.  It was very touching.  

Thank you, so very much, for touching our lives in this very special way.  We had a great time.  Aly was  so excited and was just glowing after the festivities.  I know it gave her spirits a boost as it did mine, as well.  It's been a tough journey, and even though the cancer is gone, there is still a constant battle remaining.

STMA ROCKS!    

Today, Aly got up bright and early to go to the Children's Hospital for the Botox injections for her jaw.  Kevin took a turn in bringing Aly down to Minneapolis.  They had to arrive at 6:15am, for a 7am appointment.  The doctor likes to put the kids under with nitrous (laughing gas) so they don't feel the pain of the shot.  Last time, I took her, and he said, "these kids have been through enough."  Maybe I should've requested the laughing gas at the clinic last week when Aly had to have 4 shots!  

Anyways, please say a prayer that the Botox will stop the jaw locks.  This time they did a stronger dose.  She's still been having jaw locks a few times a day.  She is used to them now, but it would be nice to have one less thing to deal with!  Thanks!  

White Cane

 Last week, Aly was playing with her American Girl dolls and came up with the idea of wanting a white cane for her doll Hope, who is the one we specially ordered with no hair.  Aly went on the American Girl website and searched for a white cane.  They have other accessories, such as wheel chairs and crutches, but no white cane.  So, Aly proceeded to Google and searched for "white cane for dolls."  She came across a website that shows how you can make one, so that was the craft project for the weekend.  On Friday, Aly and I went to Home Depot and purchased a wooden dowel and some black, red, and white electrical tape as well as some white spray paint.  I also purchased some paint for my bathroom as that was my project for the weekend!  Kevin and Aly worked on the cane.  Kevin cut the dowel down to size and then spray painted it white.  Today, they used the electrical tape and some string to make the finished product.  It looks pretty cool and just like Aly's cane.  Aly was so excited!
I was excited to paint the bathroom!  It looks fresh and new again.  Aly even helped me clean it after I was finished painting last night!  She offered.  She asked if we could play a game and I had said, "maybe after I finish cleaning the bathroom, " to which she replied, "Oh, can I help?"  I'm not going to deny anyone who WANTS to clean the bathroom!  I hate doing it!  While I was cleaning the sink and scrubbing the floor, she was cleaning the toilet and rinsing out the bathtub.  Great teamwork!  Once we were done, we joined Kevin for some games.  Of course, we also had Hockey Day in Minnesota on the tv in the background.  The Gopher game and the Wild game were good!  We were a little worried about the Wild, but they kicked it in gear.
Aly also did more cleaning on her day off from school on Friday.  She's done this before, and it is always a very nice thing to come home to.  She had done the dishes, straightened up things that were laying around, emptied the garbage cans and put her own laundry in the washer.  NICE!  I don't know where she got that love of cleaning from, but I like it!  :)
I'm still going crazy trying to set up appointments.  I've called 2 physical therapy clinics, in Maple Grove.  One is an offsite clinic for Children's hospital, and they have a waiting list, if you can believe that.  The other is affiliated with Gillette's Children's hospital and they are booked solid as well!  I was hoping to find a clinic closer to home, but we may need to start traveling back to Children's.  I am amazed!
I also took Aly in, to her pediatric clinic, to get a couple of immunizations that she needs for school next year and I wanted to get her a flu shot as well.  Like everything else, I've been running behind on maintenance items.  We went, after school, on Tuesday.  We get to the clinic, get ushered into a room.  It was just a nurse's appointment, so we didn't have to wait long.  I give the nurse the immunization form I needed filled out and she goes over what Aly needs.  She needed a tetanus shot, a Varicella (chicken pox) booster and then the flu shot.  She leaves the room to prepare the shots, comes back in, administers the shots and then tells us we should go out to the waiting room and sit for 20 minutes to make sure there are no reactions.  We sat for about 5 minutes and the nurse comes back out and asks us to come back in.  We are ushered into an exam room and she proceeds to tell us that she gave Aly an MMR (mumps) vaccine instead of the Varicella (pox).  As usual, that shock thing just comes over me and I become dumbfounded and can't think of what to do or say.  She says, "I talked to one of the providers and there isn't any concern about getting an additional MMR shot."  She also says, "you won't be charged for the MMR shot that was given in error, and you won't be charged for your clinic visit either."  Well, that was the least of my worries.  What the heck?  How does something like this happen?  The sheet I gave her had the shots, needed, clearly highlighted.  She also confirmed it verbally and I agreed!  I don't know why I can't yell, or scream at people when I get angry.  I shut down and go into shock. What do you do in a situation like this?  It is so unreal?  I can't believe stuff like this keeps happening!  Aly had to have the additional, correct shot, so she endured 4 instead of 3!  Once it was done, I went to the front desk and asked for the clinic administrator.  I was livid.  I have had enough of this type of crap!  We waited for about 5 minutes for this person to come.  I said to Aly, "I'm sorry, but I need to talk to someone as this is just wrong."  Aly's reply, " that is completely understandable and makes sense."  She was angry too!  We went back into another room.  I was near tears as I explained what happened and how Aly has been through enough crap lately, and to have to endure an extra shot was unforgivable.  It was unforgivable that a mistake, such as this, was made.  What if it was something that Aly had a reaction to?  My mind raced to all the possibilities.  I wanted to be sure this nurse was disciplined and that this wouldn't happen again.  This lady was nice and said everything would be investigated.  She, again, repeated that I wouldn't be charged, to which I said," I don't care about that!" I wanted confirmation, from a doctor, that there would be no issues with the extra dose.  I was asked to wait to talk to a Dr.  I told them to call me.  The Dr. called and said there was no issue.  She said she has a deficiency in her immune system in regards to the measles, so she's had 7 MMR shots in her lifetime.  I also looked on the internet and found several articles about how an additional MMR shot just gives added protection so I was extremely relieved, but still angry.  I repeated my concerns with the Dr. and I explained what Aly had been through recently and I made a comment that, "the health care industry is a very scary place."  To my shock, she agreed.  That makes me feel really safe, NOT!  She did say, again, that the incident will be investigated.
I just will never get it, I guess.  Do I let this go?  I don't know how to pursue it any further.  There are so many things, in Aly's healthcare case that I'd like to question, but who do you question?  Is there such a thing as an advocate?  Without spending $$$$ on time, lawyers, etc.?  There are so many what ifs...somedays I just sit and think about what would've happened if things were done differently.  If we would've chosen different paths in her care.  In something so life threatening as cancer or any other life threatening issue, you should be assigned a third party advocate who knows, who's been through it, who can give you advice when you have someone's life in your hands!

Upcoming Event

WHO: STMA fans 

WHAT: Girls’ Basketball game vs. Monticello 

Childhood Cancer Awareness night 

WHEN: Tuesday, January 22^nd 

9^th grade and JV games @ 5:45 p.m. | Varsity game @ 7:15 p.m.

WHERE: STMA High School gymnasium

All money raised on the 22^nd will go to the families of Aly Juntunen and Tyler Purohit, 6^th graders at Middle School East.  

RAFFLE TICKETS for a Flat Screen TV, Timberwolves tickets, and Camp Snoopy passes (among other prizes) will be sold during the JV game and the first half of the varsity game. Drawings will take place at halftime of the varsity game.

$5 for 1 ticket  |  $10 for 3 tickets  |  $20 for 7 tickets   

There will also be a 50/50 drawing ($1 per ticket) and free will donations at the door. 

The proceeds collected for Aly, will be donated to the Pediatric Brain Tumor Foundation, in honor of Aly being a cancer survivor.  Please join us and help raise funds to help Tyler's family and support cancer awareness!

More information:

Please mark your calendars for the annual Coaches vs. Cancer girls’ basketball game coming up next week. We will host the Monticello Magic on Tuesday, January 22^nd.  The 9^th grade and JV teams will play at 5:45 p.m. with the varsity to follow at 7:15 p.m. As we have done the past two years, our fundraising efforts will again stay local. This year we are raising money for two 6^th grade students at Middle School East: Aly Juntunen and Tyler Purohit (see attached picture of both of them). 

Aly was diagnosed with a germ cell tumor in April of 2011.  She has undergone surgery to remove the tumor and has had plates inserted to help her head heal. She has MRIs to check for any reoccurring tumors every 3 months, and has been cancer free since November 17^th.  Aly has lost vision in her right eye and a majority of her left eye. These days she is feeling well, is active in swimming, and is doing well in school!   http://lovingalyona.blogspot.com/

Tyler was diagnosed with Glioblastoma Stage 4, an aggressive form of brain cancer in January of 2012. He has had surgery to implant a shunt to relieve the fluid pressure, biopsies, MRIs, and continues to have radiation and chemotherapy treatments. His latest MRI in December showed no growth or movement of the tumor! Tyler is doing well, but is cautious to not get sick these days. Tyler's favorite past time activities include playing video games, and watching the Vikings.http://www.caringbridge.org/visit/tylerpurohit

I Just Can't Make This Stuff Up!

I know you all may be getting tired of my negative posts, I hope you will bear with me because I really have to share my last two days.  As usual, it is some good, some bad and some just unbelievable.
First, I'll share yesterday.  Aly had an appointment for physical therapy.  Now, I've been through some physical therapy when I had some back issues last year.  I think many of you have probably been through some for aches or pains.  When you think of physical therapy, you think you are actually going to do something physical, right?  Isn't that the whole point?  Doing something physical in order to make your body stronger?  Well, that is what Aly and I expected.  That is not what we got.  We got to the appointment, joined the therapist in her office and here's how things went down:
1.  The first 10 minutes she took refreshing herself as to why we were there, reviewing her notes on the computer, asking us questions we'd already answered...to me, these are things you do before your client arrives.
2.  The next 5 minutes was spent digging through her file cabinet for exercises Aly could do to stretch out her fingers and making copies of those exercises, again shouldn't those be ready beforehand?
3.  Five minutes taken showing Aly how to do the finger stretches (that was it for physical activity).
4.  For another 10 minutes she talked about things Aly could do at home.  She listed off things like doing puzzles, coloring, crocheting (yeah, that is a great preteen thing to do).  It went on and on...playing with clay, bouncing a basketball, playing Jenga, playing the piano, shuffling cards, etc.  She then pulled out a catalog of things that she orders from.  Showing us other items as ideas.  So, basically, I'm to go out and blow a wad of money on craft items and games for Aly to use at home.  Really??
This lady supposedly has some training in low vision therapies as well.  We were directed to her because she was closer to our home than the one we were working with in Bloomington.  Even though she is not licensed, we were told she'd be able to help with some low vision techniques.  I was thinking it would be great to kill 2 birds with one stone!  Well, that isn't going to happen.  So, anyways, she says to Aly, "I see you brought your walking stick with you today."  Aly and I looked at each other like what is she talking about?  Then we realized she was calling Aly's white cane a walking stick.  Hmmm....At this point I felt like I was on that show Punked or it was some kind of practical joke.  Aly and I shared the experience with Kevin when we got home and he was like, "I would've said something."  I've dealt with so many issues like this I tend to go numb and into shock, just sitting there thinking, oh here we go again.  Now, it's going to be more work, finding someone else, starting over, more phone calls, more time wasted...UGH!
5. Knowing that Aly has her "walking stick", she wants to know how Aly uses it so we go for a walk around the building.  This takes another 10 minutes.  The only helpful thing that came out of this whole ordeal was that she noticed that Aly does not use her scanning techniques and scan all the way to her right.  She almost ran into something as we were walking around.  This is why I've been looking for someone to work/reconfirm that Aly needs continued reminders/training in her daily travels.
6.  We went back to the office and sat.  She asked us if we'd be able to do the home activities, as discussed, for the next two weeks.  I did tell her I wasn't going to spend money on activities and she says, "well, I can understand that."  What I should've said is, "I thought that is what our insurance company is paying you for."
Needless to say, I am not taking Aly back there.  Which brings me to today.  I attempted to call and cancel the remaining scheduled appointments.  That should be a one call, 5 minute deal right?  UMM...NO...How about 20 minutes, 3 calls, transferred to a total of 6 different people, none of whom could help me.  SERIOUSLY, I'm really not kidding, six different people.  The last, told me I need to talk with the therapist directly.  Why?  I didn't talk to her directly to set up the appointments!  I ended up leaving her a voicemail.  I did tell her I was not happy with the direction the therapy was going and I wanted to cancel all remaining appointments.  Sorry!
Ok, to get the good part in here, I have to revert back to yesterday.  On the way home from the appointment, Aly and I stopped at Target to pick up some prescriptions and find something for dinner.  We bumped into Dr. Leah Colby who is a wonderful optometrist.  If you are looking for one, she works at Eye West Clinic. :)  She is the one who directed us to the eye specialist that found Aly's tumor.  I have a special connection to her as we went to the same college and played on the same tennis team...anyways, we haven't seen her for a couple of years as Aly's been seeing the specialist.  But long story short, she saw us, Aly had her cane with, and she stopped to ask us how everything was going and get an update on Aly.  I said we have been having trouble finding a vision specialist close to home.  She happened to be working with another child who was losing vision, actually going blind, so she had some ideas.  Oh, thank you Lord.  You knew what I needed yesterday and put me in the right place at the right time.  I emailed Leah this morning and she gave me some leads.  Of course, now I have more phone calls, but I think we're on the right track, at least with the vision work.  She even offered assistance.  If I had that offer more often, life would be so much better.
So there you have it...the crazy, the outrageous and some good!

On another note, I was given a gentle reminder, by someone close to me, that as we start this new year, we do need to look at the positives too.  Through all the craziness that continues, we need to stop and say, "thank you", again, to all those who have kept our family in their hearts and prayers and have helped support us through prayer, through financial gifts, through kind words.  Thank you, to everyone,  for helping us through the past 2 years.  We are forever grateful and would not have made it through without you.  I hope you will continue to keep our family surrounded by prayers and positive wishes.  Thank you very much, may you all have peace and good health this new year!  Thank you!

Longing for years gone by...

As we start another new year, I am longing for years gone by.  The years when the kids were younger and life seemed much more simple.  The years when Aly was a healthy little girl running and biking around the neighborhood with her friends.  The years when Tom was still at home all the time.
Today, Tom headed back to school.  He's been home for almost a month.  It is hard to let him go, again.  Tom and I have always been on the same wave length.  There have been, probably close to a million times, that we've said the same thing at the same time, or I'll say something and he'll say, "I was just going to say that!"  At other times, we can just sit with each other and say nothing.  It is hard watching your kids grow up and leave, or not want to spend as much time with you.  It is nice when they come home, seemingly more mature and realizing that they've missed being around home and realizing what they are leaving each time the go.  I have cherished the hours we have spent together this holiday season.
It is hard to watch Aly continue to struggle with the aftermath of cancer.  There are some, actually many, days when I wish she could just somehow take a break from the pills, from the daily hormone shot, from the constant worry that she seems to have.  I would give anything for her to have her freedom back.  I long for the days where she would go outside, for hours, to play with friends.  She continues to struggle to find kids to play with.  Somehow, I pray that the kids will figure out how much Aly is hurting.  I can't imagine what goes on in her head.  Last year, she was like a rock star, with constant attention.  Constant companions helping her get through the most difficult time in her life.  Now, play dates are like a precious commodity.  I don't know what to do for her.  I can't help that she's been through a life changer and has become more mature than her peers.  I can't change the fact that she is the ultimate caregiver and typically cares more about everyone else than herself.  She loves to hang out with adults.  Maybe because they understand.  Maybe because most adults have been through life changing events.  They can relate.  When she is around younger kids she doesn't understand why they are so loud and excitable.  It's not in her, anymore, to act her age and be a kid.  She told me a story, not too long ago, about a kid that was throwing popcorn and she just didn't get it.  I said, "well, you should be doing stuff like that too!  That's what kids your age do!"
 She did have a friend, from the girl's group at school, come over for a few hours today.  She worked most of the day, yesterday, and this morning getting things ready for her and this friend to do.  She said the friend liked doing crafts, so she took time to organize her craft items.  It was so nice to see her excited about something, yet at the same time it made me heavy hearted to know that these visits should not be so few and far between or cause this much excitement.  She goes days and sometimes weeks without anyone calling or asking her to play.  It breaks my heart.  I can't imagine what it is doing to hers.
Aly is going to start counseling this week.  I'm not quite sure what that will do for her, other than to have someone to talk to.  She doesn't like to talk to Kevin and me about certain things.  I don't think it is going to change anything.  I'm guessing it is just going to add to the maturity issue as she will be talking , sharing and discussing her thoughts with yet another adult.  I still am so surprised that I am struggling to find a cancer group for kids.  To me, it seems like it would be so much more helpful to Aly to meet other survivors, her age, that can relate to what she is dealing with.  I, personally, feel that she would feel better talking with kids her age.  I think it would help her feel more normal, more of a kid again.  I've found a few websites for teens, but most of them are for 13 and up.  Aly doesn't quite fit there, age wise, anyways.  That also isn't face to face.  We are still waiting for the yoga classes to start.  I'm hoping those will start soon.  She is also starting physical therapy this week, to help with the dexterity issues.
We received the bill for her MRI this past week.  I seriously don't know what people, without health insurance, do.  As I said, we have a large out of pocket deductible to meet, every year.  This is the only bill we will see, now, until December comes again.  The MRI, which includes the brain and spine, was $13,000.  We will only have to pay a portion of that, but we get to see the whole bill as it was the first of the new insurance year and our deductible was not yet met.  Well, in one swoop, as I said in the last blog, it is now met.  Merry Christmas to us!
I'm sorry I'm not super excited about this new year.  I've learned to keep expectations low, so that maybe I will be pleasantly surprised here and there.
I took some of Aly's hair extensions out.  The ones on the sides were hanging low, which is a good thing because that means her hair is growing some.  But, they just wanted to stick out funny and no amount of styling would calm them.  So, we decided they should come out.  She's still got some in towards the top of her head where the hair is not growing quickly.  Her hair has been another point of contention, but here, again, she doesn't want to spend time fussing with her hair.
The botox treatment is set for Jan. 24th.  She has an endocrine appointment in February, physical therapy appointments once a week for the next 6 weeks, counseling will begin if we like the counselor she has a consultation with this week.  She also wants to start guitar lessons again and is still swimming with the Sea Devils and yoga is supposed to start this month as well...maybe I shouldn't worry about any free time!