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.