One Definition of Rally:

One definition of rally..."To summon up (one's strength, spirits, etc) or (of a person's health, strength, or spirits) to revive or recover."



If you'd like to know how you can help, please email to juntunenfamily@msn.com

Tuesday, January 29, 2013

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.  

Thursday, January 24, 2013

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!  



Sunday, January 20, 2013

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!

Wednesday, January 16, 2013

Upcoming Event


WHO: STMA fans 

WHAT: Girls’ Basketball game vs. Monticello 
Childhood Cancer Awareness night 

WHEN: Tuesday, January 22nd 
9th grade and JV games @ 5:45 p.m. | Varsity game @ 7:15 p.m.

WHERE: STMA High School gymnasium

All money raised on the 22nd will go to the families of Aly Juntunen and Tyler Purohit, 6th 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 22nd.  The 9th 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 6th 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 17th.  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



Friday, January 11, 2013

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!

Sunday, January 6, 2013

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!