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!