Wednesday, September 25, 2013

Cancer Thoughts....

In previous years, I have addressed September as Childhood Cancer Awareness Month.  I have celebrated the fact that Elise is with us, and the people we have met along the way.  I still am thankful for my Elise having beat this monster disease.  And I would like to "reshare" some of those thoughts.

I have also, in person, shared how important all the fundraising is for Childhood Cancers, because the public funding and allotments are so stingy with Childhood Cancer  research and support.  Like, shamefully disproportionate:

The American Childhood Cancer Organization says "Cancer will be funded in 2009 at a level of approximately $5.6 Billion. In 2007, the NCI reported that the combined extramural and intramural funding for childhood cancer research was approximately $180 million. However, this estimate could be regarded as liberal as some of the associated research might not be perceived as directly benefiting childhood cancer. Other more conservative estimates, put childhood cancer research funding as low as $30 million annually."  And other research groups that focus on Childhood Cancer, estimate very similar numbers.

The bare bones Childhood Cancer statistics are here:

and here:

For me, I look back at the kids that I know personally that have been lost.
Lana Beth

And the hard thing for me and, most especially, their parents, is: "If research had gotten decent funding, could they have had the One Thing that would have helped them beat it?"

As many people before me have said, people in the position to allocate funds answer to adults, not kids.  So you know how "awareness" helps?  Now you know to ask.  Now you know to do all the fundraising 5ks.  Now you can donate time, money, or toys.  Now you know that we need you.

Please research any group you choose to give to.  Make sure that they are transparent in the allocation of funds.  Make sure you hold them to accountability.

Personally, we were touched by Cure Childhood Cancer, here in Atlanta.  I know for a fact, that they were heavily financially involved in supporting one Elise's doctors' research.  I know that they are funding research in long-term effects of chemo and cancer treatment drugs and protocols at the group that has handled all of Elise's treatments and follow up medical involvement.  I am sure that they were also involved with the experimental treatment that Elise received and that now is the new treatment protocol for all kids with Down Syndrome who are diagnosed with AML here in Atlanta.

Cure Childhood Cancer, also provided Thursday Night Meals for families undergoing inpatient treatment.  We looked forward to each Thursday as a break from hospital food.  More than that, though, it was an emotional release from the oppression of the sameness, and they gave the knowledge that there was someone out there that cared and hadn't forgotten us...or gotten tired of our emotionally draining updates.

I have been impressed with their transparency and their commitment:

But the thing you need to know, is that even if a child fights and wins, it never really goes away.

Elise not only had to battle cancer, but she is dealing with increased mental impairment because of the very chemo that saved her life.  We know this, because nobody dodges this.  The most common side effect of any chemo that I have seen is the inability to organize and process thoughts like before, in varying degrees.  And in the face of every single IEP at school and every story of children with Down Syndrome who are successful and perform on par with typical peers, I wonder again how much Cancer took from her.  Because of the damage the chemo did to her body while killing the cancer cells, she also lost a year's worth of interventional therapy.  In all areas, Physical, Occupational, and Speech, because she was too tired to grow and progress.  And we are still seeing the loss.

Why families who have lost kids fight passionately, most people understand.  They miss their child, and want to honor their baby's memory to help other kids NOT lose.  The ever popular "F U Cancer" indicates just how unending the battle is. 

Those who have battled and made it?  We fight because we lost kids who we "playdated" in the halls during treatment.  We fight because we feel guilty to have won, with nothing more to recommend us than anybody else.  We fight because we know how brutal the path is.  We fight because we fight the long-term effects every single day.  We fight the heart damage, the mental impairment, the systems failures, the lung damage, the liver damage, the secondary cancers, and the chronic fear.

We fight, because it is never over.

Tuesday, September 24, 2013

Post IEP Bipolar Disorder.

Post IEP Bipolar Disorder.  It's not real.  But it could be.  Even confident parents who get their kids all the things they need.  After IEPs that are good and easy, ask those parents when they come out how the feel...And after bad's just not as much of a surprise...

They are happy, positive, and hopeful.  And emotionally spent.  And verging on depression.  And even non-criers, find themselves on the verge of a soggy breakdown.

All at the same time.

Elise's IEP was really good today.  I led out with my two biggest concerns.
We now have on the books, a tentative plan in regards to her physically maturing and dealing with menstruation issues...thankfully, we are not anywhere near there, but better to have a plan, than be completely blindsided whenever it comes.  As of right now, the plan is to bail from school, until she is accustomed to expectations...and then we will revisit.
I also requested to hold her back next year.  She is thriving and growing and learning, and the elementary school offers her more typical opportunities at this time.  At my request, the facilitator/assistant principal, therapists, and teacher all started giggling and revealed that they too, were going to suggest that at today's meeting.  For the same reasons.  I was pleased to have such a confirmation to my convictions, and to have no opposition.
They responded with her achievements, her progress, and her maturity.  She has added sight words, she has improved in handwriting, she has improved in math.  She is attending a typical science class, 4 times a week.  In this class she is surrounded at all sides, with typical peers.  She keeps her hands to herself, she attends to the instructions, and participates in every experiment.  She has friends.  She loves to cut up, and defends her besties with a fervor that rivals a mama bear's instincts.  She can write her name in an intelligible manner that anyone could read, complete with an age appropriate colored bubble dot over her "i".  She can copy sentences with a competence, that most people could decipher subject matter if pressed.
She is making huge progress with speech, as I have bragged on before.  She is learning to use different key words as alternatives, when people do not comprehend.  She is making strides to become clearer.  She is learning that words have more value in stories than she even thought.  Her stuttering comes and goes.
The kicker that I (re)learned today, was that age eleven is typically when kids start losing therapy services when they neither progress, nor regress.  That she has made minimal progress, I am not shocked.  I live with her and stuff.  That we have reached a plateau, that it is highly likely will not change significantly, even into adulthood, is a blow.   
Remember back when I asked "When do you accept that this is where you are?"  This might be it on the physical front.
She is still progressing cognitively, she is still progressing in speech and communication.  But there is so little progress, and has been so little for so long in gross and fine motor, we shouldn't count on having too much more...
She may not ever be able to tie her shoes, button her shirt or pants, or snap snaps.  Even socks present a worthy challenge.  Her handwriting is unlikely to improve significantly.  She will always struggle with balance and agility.  She will struggle with many physical traits that will hamper her significantly.
Not that I won't continue to access therapy until they say "No".  A surprise benefit to holding her back is that, since she will stay in elementary school, she will also benefit from continued therapy services.  It is a guarantee that she will, at a minimum, lose half to 3/4 of her current OT and PT upon progression to middle school.  
Not that Little Miss Resourceful won't find ways around the *typical* way to do things.
But it is time that I start accepting that we have officially lost the wide open door of possibility.
It is time that I start looking only at her strengths and realize that if this is as good as it gets, it isn't "settling".  She is still an awesome girl and she is meeting her potential.  And that's not only okay, it's a good life, maybe even a great one; even if she won't have the life I had hoped for at her infancy.  She is certainly still cognitively expanding, and so that door isn't closing at the same rate...thankfully...  But, I cannot lie to myself, and say that things are going along at a bang up rate.
She is an amazing cookie that has an amazingly positive impact on everyone in her life.  She will continue to grow and make an impact.  I fully anticipate that she will pick the lock on the door of her life and make some spectacular splashes, but she might need more help than originally thought.  But really, wouldn't you want to hang with a smile like this for as long as possible?

However, I will be shopping for stretchy pants with no snaps and super fantastic shoes with velcro, for her as she takes over the world from her SECRET LAB OF POWER...Because there is nothing slowing that brain of hers down yet...just her fingers.


Tuesday, September 17, 2013

10 Things That Are Good

As promised, I do have some gumdrops and lollipops...Here are 10 Things That Are Good...

1)  Elise made her second fashion request in almost 11 years.  Twinkle Toes.  (In case you are curious, her first was little fuzzy "ugg" boots.)  I know you are probably wondering why this is a good thing?  Well, first, it shows a personal style preference, indicating that she knows her own mind.  Second, well, she had to put forth a request, and make it understood.  And "hingk hoes" is a little obscure for breakfast conversation...but she totally pulled it off.  (In a related PSA:  putting Twinkle Toes on your kid in the semi dark could easily initiate a seizure.  I felt well beyond weird the other morning, kind of space travel disoriented, but with a little gag-y eye pressure thrown in...)
2) Elise, while making rotten choices with Amelia, is keeping her hands to herself at school this year.  In previous years, it's more 2 no-touch-days in a school week...and this usually doesn't happen for at least 2 weeks into school year.  This year, she is more like 2 touching-days in 2 weeks...and it started with the start of school.  This is amazing.
3)  She is not wiping food on friends at school, and only occasionally on her sisters.  HUGE leap forward.
4)  She is writing more letters independently and drawing pictures with significantly less coercion. 
5)  When she is "writing" letters to people, she is addressing them with people's names...and the first letter is correct, 80% of the time!!  Also her "E"s only have 3 horizontal lines over 60% of the time, unlike her previous "if 3 is good, 9 would be brilliant" rational.
6)  She is attempting to communicate whole ideas, experiences, and desires.  I grant you, her speech is garbled at best, and it is still very elementary, but she is striking out past 2 word phrases.  I would like to credit her speech therapists with using her interests in speech therapy instead of sticking to "speech therapy protocol" and thinking outside Dolch words.  Pam and Kathleen, y'all ROCK!!
7)  I have started having my girls pick out clothes the night before and put them on the floor laid out like people.  She know what she needs to make a "school person", even if she cannot lay it out smoothly...AND she sticks to the decision in the morning.  BOTH huge leaps!!!
8)  She mostly takes her meds without spitting them out.  I say mostly, because there are still some rather sticky days, but she is getting waaaay better!!
9)  She is all about negotiations.  Now.  This is driving me bat crazy right now...but it is seriously high level thinking.  She is always arguing with me, that "Daddy say 'YES'!"  (Usually I also get the full body attitude wiggle with it!)  When both of us know, that a) it isn't so and b) he was not around to be asked.  But she is ALL her daddy's girl in the world of negotiations.  She will find every loop hole in a phrase.  She will put up insane options and then back them down to ludicrous, hoping that I will fall for the bait-and-switch as proportionally reasonable. 
10)  She is requesting hugs and kisses.  Again, I realize this is not huge to most kids, but for Elise, she used to stand and grunt with her hands out.  Now she demands "Kiss me, please!"  and "Need hug, please!"  And I always comply, even as she invades my personal space and I can't cook for her standing one millimeter outside of my skin.  Because, really, who couldn't use more love?

Monday, September 16, 2013

10 Things I Am Feeling

I have enjoyed reading several honest posts lately...and I swear I was steeping this post in my head before I read of the most striking ones was this one:  Some Kids Are Hard To Raise

I am feeling the heavy of what's going on with Elise...I love reading about how awesome everyone's kids are doing, but it gets a little depressing when you read the 30-eleventh post on how somebody's kid with Down Syndrome is totally on grade level and is hanging with their typical peers...and all that jazz.

I am also feeling a lot of the sensory crazy with both Elise and her twinkie, Charlotte.

Last Tuesday, was Elise's Off Chemo anniversary.  9 years.  On one hand, I feel like I just turned around...I remember everything...I can smell the antiseptic scent of the hospital cleaners and tape adhesive.  On the other hand, I feel like we have lived 2 lifetimes since then.  The time has gone quickly this year.  But it has been such a hard year, I have felt every.single.second. of it.  I don't understand how you can feel both the oppressive passage of time, and the speed with which it passes you you in the same instant, but somehow I absolutely can.

I know that much of the difficulty with Elise, is sensory-based.  I didn't realize how much of that was so, until Charlotte started upping the ante.

I also know that Elise isn't just a child with Down Syndrome.  She also has ADHD, a sensory processing disorder, and is still paying the piper cognitively for fighting and winning against cancer.  Even if she had not had Down Syndrome, she would have been a difficult child to raise.

But lately, I have felt some wistfulness for an easy kid.  Just one.  I don't have one, in case you were wondering.  I have 15 year old son who has charisma that oozes out of his ears, and is very intelligent, but has the attention span of a squirrel when it comes to school responsibilities.  I have Elise.  I have a 7 year old with dyslexia and a type A personality, that is beginning to feel the effects of dyslexia on the perfectly ordered world she craves.  And I have a 4 year old who is beginning to make Elise's sensory issues look like child's play.

I would like to take today to say, out loud what I would like...

1)  I would like to choose a church based on my family's desires, instead of which church has a special needs program that is safe and actually teaches Bible stories to Elise.

2)  I would love to go to the grocery without anxiety over Elise throwing things on the floor that she doesn't want me to purchase...or clothes-lining a stranger child in an aisle...or opening a box of something I wasn't planning to purchase...or filling my cart with pretty boxes of things that she wouldn't eat in a million years that I have to replace on the shelves...or giving her earsplitting hoot because of the nice acoustics in the freezer aisle...or....well, you get the picture...

3)  I wish I wasn't having to plan on holding her back to account for the extra years she gets to stay in school.  I mean, she is thriving with her current teacher, and I am pleased to keep her back in a school that I cannot say enough good things about....but, when you have that kind of flex, and are not anticipating a huge personal maturation, it's kind of depressing...

4)  I wish I could trust her not to take the 30 seconds left alone with her sister to "make her pay" for the emotional withdrawal that she can feel.

5)  I wish this wasn't a true as it looks: 

6)  I wish she wasn't so tapped out when she gets home from school.  She puts every single moment of effort she has into the school day.  She literally has nothing left to give by the time she gets home.  She spends every afternoon and weekend in "repair mode".
7)  I wish she had a lovey or pet or something to help with her self-soothing, because she has sucked her thumb so hard over the last few weeks, she gave herself a blister on her thumb.  And guess what she wants to do to make herself feel better over the booboo on her thumb?  Yeah.  It has been all kinds of lovely.
8)  I wish she would accept that I have to brush her hair and teeth every day.  I don't understand why it has to be the battle it is.
9)  I would love it if she had more coordination/initiative to dress herself...we are still at the 3 year old level of having to have aid in getting stuff on and buttoned and tied and not backwards...and at 110 lbs, she isn't super easy to manipulate quickly.  And there is nothing like trying to hurry and having her have a fit or losing her balance and crashing into you...there are a few muscles that I have discovered by catching *us* from falling...and Aleve is becoming more and more a staple in my first I thought maybe I had fibromyalgia, thanks to the pain, lack of sleep, and general anxiety, and then I realized that I think she maybe has escalated me to shell shock (aka combat fatigue) and then been heavy enough that I am feeling the physical toll of helping a small adult with toddler-like self care. 
10)  I wish her desire to run could be rerouted.  I mean, she still will break out of the car/house and streak off, and yet, I cannot get her to walk or run recreationally.

I know this isn't a roses and gumdrops post.  And I am sorry for that.  But for all her increases at school, it gets harder at home for a while...and based on home lately, I anticipate a great feedback session at the IEP meeting at the end of the month.  I'll let you know.  Also, I promise a 10 great things happening within the next week!