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

Sunday, October 28, 2012

jaw locks

Well, the doctor said it would take 3-5 days for the botox to start working.  On day 4, Aly went through the day without a single jaw lock.  She was thrilled.  She had activity night at school so she didn't have a chance to tell Kevin the news before she left for that.  She told me to, "make sure you tell Dad I didn't have ANY jaw locks today.  I even ate one of those caramels and it didn't do anything."  She said she hadn't felt anything in the jaw area.  Usually she gets a tight feeling or it just locks, but this day nothing!
However, yesterday she had a jaw lock and just the one.  I was doing some cleaning and Aly came in and said, "Mom, my jaw just locked."  Oh, you could read the disappointment all over her face.  She was ready to cry.  I didn't really say anything as I was right in the middle of my cleaning project.  I should've stopped and said something or give her a hug.  She left the room for a little while.  Then she came back and sat on our bed.  Kevin was in the room and I was in the adjoining bathroom, still cleaning.  I heard Kevin ask her why she looked so upset.  She started to explain how she "went through the botox for nothing."  Kevin and I both said she has seen improvements and I reminded her that it was day 5 and the doctor said 3-5 days.  I encouraged her and said that even an improvement, being less jaw locks, should be worth it.  I hope this works.  I hope she has more days like she did on Friday, with NO jaw locks.  Sometimes I feel like I am giving false hope, or trying to convince myself that these things will work.  I hate these disappointments as much as Aly does.  I wish a long string of positives would start happening for her!

Monday, October 22, 2012

It's almost November!

Time continues to fly and I heard something about possible snow this weekend in the forecast!  Yes, that nasty 4 letter word!  At least it is nasty to me.  I think there should be NO snow allowed before my birthday!

Anyways, one year ago, Aly was just completing radiation treatments in Florida.  She was done on October 25th of last year and she was looking forward to being home, just in time for Halloween!  So, we are just about to the one year mark of being cancer free!  We are blessed that the cancer treatments are becoming more and more a distant memory.  We can only continue to pray that the cancer is gone forever and we will never have to experience that again.  We will continue to pray for a cancer cure and for better treatment options in the future.

Today, Aly and I ventured to Children's to have them do botox injections into her jaw muscles.  She continues to have jaw locks and this may be something that will help.  I was under the impression that it could get rid of them all together, for good.  After seeing the doctor today, it sounds like it may only be a temporary fix, IF it works.  He told us that they are typically done about every 3 months!  I'm not sure I like that option.  I guess we will have to wait and see if it does work and then figure out what to do.  He told us that it typically takes 3-5 days to show proof.  I was already optimistic as Aly said her jaw did not lock during lunch or dinner.  Only later, did she tell me that she had a caramel which produced a lock.  Now, she just returned home from swimming and said it locked during swim practice as well.  So, I guess we need some patience.  Please let this help her and relieve this annoying affect.  We still don't know what is causing it and that is the most frustrating to me.  No one will say, it is from the radiation or it is from her brain surgery.  No one knows why it happens some times and not others.  I still don't understand why everything to do with Aly seems to be such a mystery!  I know that she NEVER experienced these before treatments and that they started during the last week of radiation treatment.  Nobody wants to take claim.  Kind of like certain politicians!  (rim shot please...)

Even with it all, Aly continues on the path of being as normal as possible.  She went to a friend's for a birthday party sleepover on Friday.  She had a swim meet on Saturday and Sunday.  The 6th graders are getting ready for a 3 day field trip to Long Lake Conservation Center on November 7th and, recently added, an overnight field trip for student council members on Nov. 1!  The council will attend a leadership conference in Alexandria.  She is excited and looking forward to both trips!

I will forever wish that there was more we can/could of do(ne) to help with her vision.  Her vision loss has seemed to have taken the most away from her.  I watch her become more isolated because she can't be as active as she once was.  I know it affects her friendships as she is now unable to do many things her friends want to do.  They don't come around as much anymore.  Aly seems to have to initiate calling or going to doors to ask someone to play.  It hurts me to have her tell me she's going out to play and ask what time she should be home...only to return 5 minutes later when no one is able to play.  I watched, at the swim meet, as a girl waved at Aly and Aly didn't respond.  I asked, "did you see______waving at you?"  Her response was, "no."  I hope that kids don't think she is standoffish or ignoring their hellos and waves.  I almost feel like she needs to wear a t-shirt that says, "you may think I can see you, but I can't"  or something like that.  Aly functions incredibly well with the lack of vision she has.  To look at her and watch her you'd never know.  I just want to know, how to put the word out so others know she's not trying to ignore, she just doesn't see.  You can be standing next to her waving your arms up and down and she can't see you.  She frequently walks right past people because she has no peripheral vision.  This summer, she was teased, by Tom, because she ran into the dining table one day.  So, I taped up a pair of Aly's swim goggles, to mimic her vision as described to me by the doctor and by Aly.  I made Tom wear them for a little while.  It is not quite the same, as we can turn our eyes to compensate, but it is still pretty dramatic to put those goggles on.  If anyone wants to borrow them, I'd be glad to share!  It just pulls at my heart, all the time.  I don't know what else I can do.  Moms just want their kids to be happy and it is REALLY hard when they aren't!

That's all for now....

 

Wednesday, October 3, 2012

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....