Debate

Soon, the first presidential debate will air.  I may have to tape it and watch it.  Aly has swim practice tonight.  I really want to know who to vote for this year.  I consider myself a true independent and typically vote for whomever comes closest to matching the positions on the topics that I feel are important.  This year, at this point, I really have no idea who I will vote for and I'm not using this blog to state my political views.  I know we can't keep going down the same path, but I also don't think the other side will do much better.  If I had a third option I'd be a happy camper.  Many have said to me, "well you do have a 3rd option, but then you'd be throwing your vote away."  Well, really, what is the difference if I don't want to vote for either candidate?  And maybe, there are enough people, like me, that feel the same way?
There are so many topics that you don't hear any discussion about and many aren't addressed until they are experienced first hand.  I have been posting on Facebook, for the month of September, facts about pediatric cancer on the Rally 4 Aly page.  September was pediatric cancer awareness month.  Another mom, who's also had a child with cancer, posted a picture that said something like, for most people September is cancer awareness month, for people experiencing cancer, every month is awareness month.  Aly's cancer battle has opened my eyes to so many things, good and bad.  I see so many deficits now that I didn't see before.  Issues with health care, cancer treatments, patient care.  Issues with schools and how there is a major lack of funding to handle special education and children with disabilities and other health issues.
I really wish there was a way that I, just one person, could make a huge difference!  I know I'm like so many others, when I look at the obstacles and what it would take to make just a small change, I freak out and think, how does anything ever change?
I had a meeting, last week, at Aly's school.  I am going to preface this by saying, they have been outstandingly accommodating to Aly and her needs.  I love the staff and I can't say enough good things about all they have done for our family.  I think the change needs to come from state funding, or higher up in the chain of command.  I saw issues when I worked, for a short time, as a para for special ed., a few years ago,  and now that Aly's vision issues have put her in the special ed. category, I see it even more.  There is a lack of funding for staff to help with special needs children.  It seems that is where the first budget cuts are made.  It seems to take months to get your child "qualified" for special education and then once they are the needs aren't easily met.  I attempted to see if Aly could get into an adaptive phy. ed. class because she is unable to participate in any sport that has flying objects.  Yes, limiting right?  So, I was hoping that the meeting would provide a quick solution.  Instead, it showed me that options are very limited and very complicated.  It is unfortunate.  How does one going about changing something like that?  It is a minority of children that need these programs and because of that it seems that they lose out.
I sit here and wonder about how viewpoints can be changed.  I've seen so many facts, this last month, in relation to how children's cancer research does not get the funding because it is such a small fraction of cancers overall, yet it is one of the leading causes of death in children.  I ask myself, am I doing what is necessary to help Aly recover from her cancer experience?  No follow up, such as physical therapy or psych help was ever suggested.  Yet, I read adult cancer magazines and they say how helpful physical therapy is in recovery....I think about Aly's experiences in the hospital and how much better it could've been.  Even after having the treatments at a children's hospital.
I, still, would like to start some type of children's cancer survivor group, but there again, I don't know where to start.  It would be nice to have some type of chat session where kids could just get together and talk and share their experiences.  I still haven't found anything like that for Aly.  It surprises me.  I'm still digging....

Ok, I'll get off the soapbox now...Aly had an appointment with our eye doctor this week.  As expected, there has been no significant change in her vision.  Aly has a very small area, in her right eye, that she can see out of when her left eye is covered.  The vision in that area has changed for the better.  It is clearer than it was (her last appointment was right after treatments were completed), but it is such a small little area, it doesn't help her function any differently.  We asked about any possible medical advances in vision research.  He said, "at this point there is not enough concrete evidence to warrant any attempts."  He said there has been work done with stem cells, in China, but the numbers don't back up the work.  He said the risks far outweigh the potential benefits.  He told Aly to wear glasses, at all times, to protect the vision she has left.  We need to be thankful that she has some vision and is able to be pretty independent and read, learn, enjoy as much as she can....

 

Conversations with Aly

I think I may change the blog to "Conversations with Aly"...

She is such a mature soul, but still has that childhood innocent thinking that reminds you that she is still a kid.  Yesterday, she and I were on the way to my nephew's son's birthday party (Happy Birthday, again, Jack!).  A song came on the radio and I said, "I like this song, but I don't like what it is about."  Aly asked what I meant and I told her that it sounds like the song is about a girl with a drug problem.  It has such a happy beat to it, but the lyrics are sad.  Aly goes on to say, "Yeah, I'm never going to mess up my life with drugs.  I take enough, but those are there to help me."  Then, "I WAS happy to have them in the hospital because they'd help me forget about what was going on."  Sometimes I am just flabbergasted and left without words to say when I talk with Aly.  This conversation led her back to memories of being in the hospital.  One pain medication she took made her see webs, and she started talking about  how she couldn't remember why she started calling them "web-ies".  She then said she remembered me taking her down to the jacuzzi at the hospital, and she remembered we were laughing at something but she couldn't remember what it was.  I reminded her that we had put a little bubble bath in the jacuzzi and how the tub was pretty much overflowing with bubbles because the jets were so strong!  That was right after her brain surgery.  The first time she felt like getting up to walk.  We pretty much bribed her to walk saying, "they have a jacuzzi tub on this floor, that could be your walk for the day."  She could never get enough "warm" things.  We also talked about "toasty tea".  Aly loved the hot tea and how it made her warm inside.  She talked about how the nurses thought that was "so cute" when she called it toasty tea.  She couldn't figure out why they thought that was so funny and cute!   She also talked about how one night she was really chatty and she felt sorry for Kevin because he was trying to sleep, but she couldn't sleep and just wanted to talk.  She felt sorry for him because he had to get up and go to work the next day...I am just glad that she seems to remember more good times than bad times from being in that dang hospital! or maybe that is what she chooses to talk about.  I don't know!  All I know is I was glad it was a 20 minute drive so she could get all this out!

Anyways, things are going pretty smoothly... knock on wood!  I'm still totally frustrated with doctors, that will be a never ending thing I'm afraid.  At Aly's appointment on 8-31, we were told a person who does yoga with children survivors would call us and give us information about her program.  We were told we'd hear from the ENT who was going to do botox injections to see if they'd help Aly's jaw.  We were also told we should hear, soon, from the psych people who did the neurology test on Aly.  At this point, we have not heard from the yoga instructor, we have not heard from the psych team and it took 2 weeks of phone tag to connect with the ENT doc who told me to call right back for an appointment for the injections.  This was last Tuesday.  They said their first opening was October 22, a month away!  GRRR...I don't get it, never will get it.  When Aly went in for the psych testing, the doctor actually said, "I'm not good at getting the reports out on time.  If you don't hear from me within 6 weeks, call my office."  Really????  Is that my job responsibility, to be your secretary?  I'm beginning to think that is my new role, following up on doctors.  If only I got paid to do so!  I'd be making good money by now!  The worst feeling is that I am feeling complacent, like it is ok to wait this long for results.  It  seems to have become the norm in today's society, so do I just let it be that way or do I hound people like there is no tomorrow?  It is just SOOO frustrating.  

Good Stuff

Well, I should have posted this sooner, I put it on Facebook...Aly is a student council member!  She is excited.  I'd like to see the short video recording she did.  All candidates had to do a little campaign video.  I was told that she said the school has done so much for her, she wants to give back.  Cool!  Her first meeting is tomorrow morning.  They get to help decide what dress up days the middle school will have for Homecoming week.  Sounds like fun!  I should tell her to have an 80's day, with all the fluorescent clothing out during back to school shopping, I felt like it was back to school time for me!  I told Aly it all was similar to what we were wearing in high school.  She just rolled her eyes at me!  Isn't it true though?  I saw bright shirts cut short, or off the shoulder style with a tank top underneath, and the bright colored pants that look like they'd glow in the dark and don't forget the shoes...converse high tops and bright laces!  Crazy...I guess it's true that fashion follows a 20 year cycle, so what's coming next the 90's with big shoulder pads??  LOL!

Anyways, in other news, Aly had a check up with the Endocrine Dr. today.  It went well.  She went over the results from labs taken before her most recent MRI.  They checked her growth hormone levels.    She said they were doing great, even on the lower dosage that Aly is on.  The normal range is anywhere from 97-332, with the mean being 194.  Before Aly started the hormones, her level was around 40.  On the hormone treatment, it is currently at 297.  Yeah!  That means that we can actually decrease a bit.  She is on the higher side of the normal range.  That makes me feel better about the whole issue.  I wanted to be sure she was getting what she needed, but not have other issues/side affects that she was having on the higher dosage.  Aly is glad that she can continue the smaller dose.  It doesn't take as long to inject.  It also seems to be producing some height!  From the time she completed treatments in November 2011 until May 2012 she only grew .95 cm.  From May 2012 until today, she has gained 4.26 cm, which is about 1 1/2 inches.  Fantastic!  It is nice to have some good news and proof that we seem to be on the right track.  The Dr. said Aly should continue to grow upwards and develop lean muscle mass as she becomes more active.

Good Day!

Back to School!

Today is the first day of school for Aly!  Thomas has been in school for 2 weeks!  I drop Aly off, in the mornings, on my way to work.  On the way to school Aly says, "I'm kind of excited that school is starting."  She is happy to be able to attend the first day.  Last year, she didn't get to join her classmates until November 1st.
This year she has some big plans, already.  She wants to campaign for student council.  She spent all evening, last night, coloring a poster that says, "Vote for Aly".  So cute.  During the open house, she picked up some worksheets that have to be filled out in order to run for council.  It had questions to answer.  One was, "what makes you a good candidate?"  Aly said that going through and surviving cancer has taught that she can do things she didn't think she was capable of.  She also said she likes to volunteer her time and help people at home and in her community.  Definitely true.  I hope she makes it.  She would be a great student council member.  Anybody who has kids at Middle School East...ask them to vote for Aly!  :)
Aly's cancer doctor said that Aly will need to do another MRI in December.  If that one is clear, we will go to 2 per year!  Yeah!  November will be the one year anniversary of being cancer free!

Another reminder to consider a donation to CureSearch as September is Childhood Cancer Awareness Month.  All donations are tax deductible and 94.6% of proceeds go to research for finding a cure!  We are walking, in St.Paul on Saturday.  We have joined Luke Letellier's team for walking.  Join us if you'd like!

www.curesearchwalk.org/twincities/teamluke

MRI

Aly had her MRI yesterday, and everything was clear!  :)  Let's keep it up!

A Sign...

Have you ever seen a sign that just spoke to you?  That you just got a certain feeling from?  Well, on our very LONG road trip, this sign spoke to me.  Not once, but twice.  It is a town in Southern Minnesota, somewhere near the Iowa/Minnesota border.  I saw it on the way out of Minnesota.  I thought about it, many times, during our trip.  The first time I saw it,  I wondered what it would be like to live in the city of Hope.  Or say, "I'm from Hope."  During our trip, I thought, "I hope I see that sign on our way home."  I was trying to rack my brain to remember where that city was, yes it was a very long drive and I forgot where it was.  I kind of watched for it, off and on, on our way home.  Somehow, once again, it stuck out like a sore thumb (do you ever wonder where that saying came from?)  Anyways, yes, there it was, just after crossing the border into Minnesota.  Not the greatest picture but I got it.  I was driving, and well, yes, trying to operate the camera on my iphone at the same time!  Naughty, I know, but I just had to snap it.  I just thought it would be a cool picture...exit here for Hope!  I am planning to frame it and hang it somewhere!  :)
Mainly "Hope" kept crossing my mind because it seems to mean so much to Aly.  She doesn't talk about it often, but it keeps popping up here and there.  When she was first diagnosed, her fourth grade teacher, Mrs. Woods, gave her a stuffed dog.  Aly named it Hope.  Most recently, we ordered an American Girl Doll for Aly...for those of you not on Facebook,  I had posted that AMG FINALLY came out with a bald doll.  Aly had to have one.  During Aly's fight, I had ordered an accessory for a doll Aly already had and I asked them why they don't have a bald doll and made the suggestion that it would be nice for girls going through cancer or other illnesses that cause balding to have a doll that looked like them.  (No, I'm not taking credit for them actually producing these dolls.  I'd have to guess they've received MANY requests.)
To get back on track...Aly received the doll and, yes, named this one Hope.  I didn't feel like I needed to ask her why.  It has been a recurring theme.  Every time this word is mentioned, by Aly, it warms my heart.  This girl is something so special.  She can't stop thinking about hope and hoping for a better future...adults take notice, your kids can teach you things!
Our trip went pretty well.  Our first stop was to get Tom settled in his dorm in Lincoln, Nebraska.  Yes, I shed some tears.  Not too many, knowing that I'd see him a week later for his birthday.  But, yes I will admit it.  I shed more because he seemed to really want us to leave!  He seemed excited for the adventure that was about to begin.  Nobody ever told me it would be so hard to let your kids grow up and watch them pull away!  Of course I loved getting a text from him, tonight, asking if anything would happen to his white clothes in cold water!  Mom is still needed after all, YES!
After leaving Tom, we continued on to Austin, TX to see my brother Jeff and his lovely wife Steffani and their grown up kids.  Steffani has been through the college years and she knew exactly what I needed.  We arrived late Friday night, and on Saturday morning, I was told I had a "meeting" to go to.  Steffani had set up a massage appointment for me.  Then she took Aly and I to get manicures.  What a treat!  Thank you Steffani!  You knew!  :)
During our trip, Aly came down with an inner ear infection.  We ended up taking her to an urgent care because she said she was in so much pain.  She was having what she described as a headache and the pain was at the base of her skull and she said, behind her right ear.  She was crying and just out of sorts.    At some points she was just so dramatic, I couldn't believe there would be that much pain.  The doctor took one look in her ear and said, "oh yeah, it's very red in there."  He said Aly had, "a doozy of an ear infection."  As soon as we heard that there was major relief, mostly from Aly.  It was like a switch went off and she was back to her old self, for the most part.  She still had some pain and discomfort, but it seemed a lot less than before.  She admitted she was extremely worried.  Granted, she has every right to be after all she's been through, but it was noticeable that she was overreacting.  It is frustrating that something like this would cause her to freak.  It wasn't a pleasant thing to see, and it tells me, further, that she would benefit from some type of counseling or group session with other survivors.
Once the diagnosis of the ear infection was taken care of, and antibiotics started, Aly was feeling better and wanted to give our trip to Schlitterbahn's a try.  We had to switch our plan from Monday, to Tuesday, but we got it in!  Thank you to the Wesloh family who have connections at Schlitterbahn's.  We were given free tickets to enjoy the waterpark!  It turned out to be a great blessing because we weren't able to stay all day and make the most of the park.  Aly wasn't feeling the best, so we took it easy, mainly staying on the lazy river rides.  She still had a lot of fun, and said it was everything she wanted!  Uncle Jeff attempted to take her on a tube slide, but they ended up waiting about 30 minutes and then the ride broke down!  That was the only disappointment!  To wait all that time with anticipation only to have it dashed!  Aly's ear pain was starting to return as they were waiting, so they gave up and came down from the ride line.  It was time to go.
We have also been continuing the increase on the growth hormones.  It was increased to .5 dosage this week and right away, the desmopressin to control her urine output stopped working as well.  She has now been getting up 2-3 times in the early morning to go.  I called the Dr. and, as usual, our doctor was out of the office.  Do they ever work?  I talked with the Doc on call and was told to drop the dosage back down.  This doc said that if we continue on the lower dose Aly will not get the optimal results, so they will have to discuss what to do.  Our doc said that some kids whose body is not making any growth hormones can do very well on the small doses.  I REALLY don't get the difference in opinions.  I will have to wait until Monday and ask our doc AGAIN!  Have I said before that I feel like Aly is a lab rat?  I have lost so much faith in doctors.  It is a sad statement, I know.  I need that city of "Hope"...I think!
Wednesday, we drove back to Nebraska.  Thursday we spent the afternoon with Tom and took him out for a birthday dinner of his choice.  He then asked if we could meet him for a late breakfast between his morning classes on Friday before we left for home.  That was a nice treat (his asking).  We made it home Friday evening.  I am feeling overfed, overly lazy after sitting so much, but the sun, relaxation and fun was much needed!
Today, we volunteered at the Meat Raffle.  We met another family going through cancer.  The raffle was to raise money to support Devon, a 5 year old boy, with Lukemia, and his family.  It seems the circle is getting bigger and bigger.  I don't know if it just because we've been through it or if a bigger light is shining on cancer, or if there are truly more cancers diagnosed.  We have also signed up to walk in the CURE Search Walk on September 8.  We have joined Luke's Team.  I asked Aly if we should join Luke's family or start our own team for the walk.  She, being the unselfish person that she is, said, "I think we should join Luke's."  If you'd like to join us or donate towards the search for the cure please follow the link below!

http://www.curesearchwalk.org/twincities/teamluke

Wow Time Flies!

I don't know where this summer is going!  Just one more week until we are taking Tom down to start college in Nebraska!  I have some pics on here from our trip to Atlanta.  I had to wait until Aly returned home because she had the camera! Then I had to find time to sit and load them onto the computer! :)  We've been staying up late watching the Olympic coverage.  It is so much fun.  Aly has been really interested in the swimming.  The underwater cameras are fantastic for seeing what they do.  Aly has been intently watching and figuring out how to improve her own strokes!  We catch her saying, "oh, ok, " and "I see, " while she's watching.

It can't hurt to watch the best in the world, right?

The growth hormones are going good now that we are starting over. Just to give you an idea, her original dose was 1.5 ml.  Now, they started at .1 ml and we are increasing by .1 each week.  She is currently at .2 ml.  The doctor came back to us and said, "some kids who don't produce ANY growth hormone can get by at a much lower dose."  Well, I guess!  Sometimes I feel like Aly is the test subject.  Why did they start her so high then??  They want us to increase until we get to .6 and see how she's doing at that point.  We

measured, Aly, a couple of days ago and she has grown bit.  Less than 1/2 inch, mind you, but she was so thrilled!  I know her feet have grown too.  We bought her golf shoes on her birthday.  She's worn them about 3 times and now they don't fit!  UGH!  That is the one downer!  I wish I could return them.  They look brand new still!  Anyways, so far so good.  She is not having any issues, like she did before, at this point.  Hopefully, it will continue to go smoothly!
Aly continues to have the jaw locks.  I've been waiting to hear from the doc, as Aly would like to do something about them, I guess I

need to call, again!  Hopefully, we'll be able to get in before school starts and see if the botox injections will help!
The next couple of weeks are going to fly by.  We are head to Nebraska next Wednesday.  Tom can move in on the 16th.  From there, Kevin, Aly and I are going to drive down to Texas to visit Uncle Jeff.  It was promised to Aly that she would receive a trip to Schlitterbahn's, the largest water park in the U.S.  It is between Austin and San Antonio.  We will stay a few days and then stop back in Nebraska to help Tom celebrate #18 on the 23rd.

Upon our return, it will be shopping for school clothes for Aly.  Nothing is fitting her anymore.  She, right now, is trying on all her clothes and she just came and told me she has 7 shirts that fit.  We've been trying to find jeans that fit around her swimmer's legs and newly obtained belly. We've been to 4 stores and no luck.  What is with all the skinny jeans?   She looks healthy and tanned from the time in the pool!  It is wonderful!  We are volunteering at Ditto's Meat Raffle on 8/25.  The swim team is donating proceeds to a young boy with cancer, so we want to return the favor everyone did for us.  Join us if you are looking for something to do.  1:30-5pm on Saturday 8/25.
It will also be MRI time on 8/31.  Please say a prayer that it will be clear, AGAIN!

Anyways, just wanted to check in.  It's been busy here with getting Tom ready to go, family visiting, and just summertime fun!  It is so nice to be able to say we've had some fun this summer!  Thank you for your continued support, prayers, thoughts!