Aly and I had some fun on this beautiful November day!  55 and sunny!  Nice!  CONGRATULATIONS ALYONA!

Celebrations

November is a busy month of celebrations.  It seems a lot of family members and friends have birthdays. We also, of course, have Thanksgiving and we have added a new celebration.  Last November 17th, Alyona had her first MRI after completing cancer treatments.  It was the first clear MRI and she was deemed by doctors to be cancer free.  So, we've added a special anniversary date to our calendar.  Aly was surprised that I remember the actual date.  Well, honestly it is not hard to forget considering it came the day after my birthday, but it is also because it was a blessing to hear the words that there was no cancer to be found.  It ranks up there with other life changing events.  It was a life changing event!  It meant the road back to some normalcy for all of us.
I tried to come up with something special to celebrate this date.  I found a couple of cute survivor items that I ordered for her.  I was so upset that the t-shirt I ordered came, today, and it was way too small!  I ordered a size larger than what Aly normally wears and this one looks like it is 2 sizes smaller!  So,  I'll have to exchange it.  I'm disappointed.  I know Aly, the understanding heart, will say, "oh, that's ok," but it will bug me!  It also bugs me that the other item won't arrive until Monday!  One of these days I will learn to plan better and do things further ahead so I don't run into this situation.  We'll have to do something fun tomorrow.  She is also planning to have a new friend over to play.  Aly has been part of a girl's group at school.  The girls work on social interactions.  This new friend is also in the group with Aly.  I'm hoping a nice friendship will grow from it.
Today, was my birthday.  It was a good day.  Aly took extra steps to make sure I was happy.  She is so giving and tries so hard to please.  She called Kevin to tell him to pick up birthday napkins.  She also texted Tom to remind him it was my birthday, but he remembered on his own.  She texted a couple of others I had not heard from and hinted that it was the 16th.  Too funny.   I also learned that when she and I went to our favorite antique shop, she bought me something on the sly.  I had gone upstairs and she said she was going to stay downstairs and buy a sucker.  She did buy a sucker but she also bought a Mickey Mouse watch for me.  I didn't even know!  I was blessed with all the greetings and well wishes I received today.  Kevin and Aly took me out for dinner and to a new cupcake store in Maple Grove.  Kevin brought home a headband that had a large cupcake with a candle on top.  I was instructed that I had to wear it to dinner.  That was embarrassing, but Aly enjoyed it, so I went with it.  Many eyes followed me as I walked though the restaurant.  One person actually said,"Happy Birthday!".  As we sat down, Aly said, "Did you see all those eyes following you?  That is what it is like when I use my cane or when you are bald."  It is so hard to hear these types of things.  Oh, I'm well aware of those eyes staring at Aly.  I see them all the time.  I constantly bit my tongue for fear of saying,"what are you looking at?"  It amazes me, in this day and age that there is still a stigma attached to people who look different or have disabilities.  Like everything else, I hope that this only makes Aly stronger and makes her even more of an advocate for others.  She is such a caring individual, constantly thinking about others, wanting them to be happy, wanting to help and take care of others.  She is a true gift...

Aly continues to have the jaw locks, but they are now only happening when she eats.  She hasn't had any, recently, during swim practice or flute practicing.  So, maybe the Botox helped in some way but not totally?  Maybe there were 2 spots acting up and it helped one but not the other?  Or maybe they will somehow go away the same way they came.  She also said she didn't have any while she was away on the three day school field trip, but then had them again upon returning home.  Maybe it is less stress that makes them go away?  I don't get it. The doctor suggested we wait a couple of months and try the Botox again at a higher dosage.  It'd be nice if they just disappeared.  Keep hoping and praying....

November...ALREADY??

Wow, well...as usual I'm struggling to find time to get on my blog.  Seems like I'm at work, coming home and getting on the phone, then it is dinner prep, then evening activities!  Everyday, I feel like I am still making calls in regards to something about Aly.  Doctors, school, whatever it is, one call typically turns into 2 or 3.  Never an easy answer, never an immediate yes.  I wonder if this is what it will be like always, or if at some point some things will change???

Today, Aly headed on a 3 day school field trip to Long Lake Conservation Center.  Tom had the same trip when he was in 6th grade.  It must be a good one or I don't think they'd continue to do it.  I'm worried that Aly will be ok out in the woods.  I wish I didn't have to worry, but one thing could lead to another and yep, I just worry.  They return on Friday afternoon.  At least winter has held off for these days.  It is supposed to be in the 50's for the next couple of days and Saturday may be even warmer, but I just heard that thunderstorms are coming Saturday which may turn our weather to snow on Sunday.  Just gotta love Minnesota and the roller coaster weather.

I will admit I am taking full advantage of being kid free for the next couple of days.  I'm getting caught up on Jayne time.  Today, it was a mammogram and haircut.  Tomorrow, maybe some shopping or something fun.  Tonight, it is dinner out with my hubby.

Next week, on the 17th, will be the anniversary of Aly's first CLEAR MRI and the lumber puncture which showed no cancer in her system!  I'll have to come up with something special I think!  I just scheduled Aly's next MRI for December 4th.  If this is clear, she will only have to go through 2 MRI's next year!  Maybe that will help slow a few things down!

The jaw locks continue.  Aly is still having several everyday, although she did not have any during her last swim practice on Monday.  So, maybe the Botox is working to a certain degree, but not totally.  The doctor's suggestion is to wait a couple of months and then try again with a stronger dose.  I am still waiting to hear the opinion of the neurologist.  She is the one who suggested the Botox.  We'll wait and make a decision until then.  We also got the neuro. pscyh. report we've been waiting for since the end of July.  We were expecting pretty normal results as the doctor said about that much as we were leaving the appointment, but one interesting thing did come out of it.  The treatments have caused dexterity issues.  Aly's finger dexterity has been "significantly impaired."  I'm not sure why this is or what part of the treatment would cause this, or if the tumor itself was the cause and like everything else, I'm not sure I'd get an answer from anyone.  It is just another issue to tackle.  The doctor suggested we include that in Aly's education plan, so she is not marked down, in grades, for slowness.  She said it would affect things such as typing skills and playing an instrument.  Aly plays the flute.  She actually has been struggling a bit, especially on faster songs.  It has been a point of frustration for her, and to have an actual reason why is actually a relief in a way.  I told Aly about this finding and she was actually happy to hear it.  She knows, now, that there is a reason for the struggle but at the same time, it is something else that she has to put extra effort and practice into if she wants to continue.

I just keep praying that somehow things will get easier for her....

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!

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....

 

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.