Fall Updates

Yes it is true, Clay is taking trumpet lessons. He kept asking, and we kept suggesting other instruments. Isn't the piano great? What about the flute? But no, he would not be dissuaded. And then once he got his hands on the trumpet, quiet had no chance.  Yesterday was his first lesson, and the instructor started out by asking Clay why he wanted to play the trumpet.  "Well..." Clay began, "I have a lot of free time." This morning Clay came into our room at 6:45 a.m. and asked if we minded if he started practicing.  At least he asked first, right?

Clay has put some of his free time to use by joining the Cub Scouts.  JD and Clay have attended a few den meetings and one overnight. Clay particularly enjoyed "Smash It" night where the idea is to take apart old electronics, and then if the pieces don't all fit back together, well then...."Smash!"  JD and I were worried that Clay might be discouraged by the things he cannot do as a scout, but he has decided to embrace the experience and do what he can.  The Scoutmasters have all been welcoming and helpful, and Clay is so proud to go off to the meetings with his Dad.

 
A week or so ago we enjoyed a Sunday spent with Pat Leahy and his film crew.  They are producing a documentary called Blind Lifter.  This film will encourage kids with all types of disabilities to use exercise as a way of strengthening themselves both mentally and physically.  As you may recall from an earlier blog post, Pat was featured in The Washington Post last Spring for the accomplishments he has made in his life in spite of losing his vision.  We have enjoyed getting to know him, and he has been very helpful in giving me suggestions for Clay.  He and his trainer worked out an exercise program for Clay, and we met so they could show Clay how to use the new equipment.  They filmed Clay and Pat working out together, and perhaps some clip of this will make its way into the documentary.  Clay has been using the new gear at home, and maybe his new arm muscles will come into use to help him hold up the trumpet!  You can read more about the film, and see a trailer for it here: www.blindlifter.com

During all of these activities, which take time and patience, and parents, there is Grace (not the virtue, but our daughter!).   Grace turned 11 recently, and since she has become quite a baseball fan, she picked a day at Nationals Park to celebrate. Then, she and I took a weekend trip to NYC to see the show Matilda on Broadway.  It was a wonderful production, and several of the songs have already become favorites for me and the kids (See below).

Now an update on the medical front.  The project we started at Johns Hopkins last year with support from many of you has had some promising first steps.  The goal of this project is to develop a good model of the tumor that Clay has.  This tumor type does not grow well in culture.  So the project is seeking to develop new, genetically accurate models for the tumor, using neural stem cells (which is where things go wrong and lead to tumors).  These models can then be used for drug screening - to find the drug that will target the "Achilles heel" of the tumor,  and make it collapse, with a minimum of side effects for the patient.  At this point in the project the doctors have developed models for two of the more common genetic alterations.  These models are growing well in the lab.  One of the models causes tumors to grow in mice.  In the next few months, they will determine if the models respond to a drug that blocks the signal that is abnormally activated in these tumors.  If the test drug works, this will be a new path to screen thousands of new and FDA approved drugs to see which could be used to treat PLGA's. 

JD's fraternity at the University of Richmond is helping to continue this critical work by holding the second golf fundraiser this weekend. You can read more about the event, the research and PLGA here: http://akidsbraintumorcure.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=504. 

There is a song in the show Matilda that I can't get out of my mind, called Naughty. The words go like this:

Jack and Jill, went up the hill
To fetch a pail of water, so they say
Their subsequent fall was inevitable
They never stood a chance, they were written that way
Innocent victims of their story!

The endings are often a little bit gory
I wonder why they didn't just change their story?
We're told we have to do as we're told but surely
Sometimes you have to be a little bit naughty

Just because you find that life's not fair it
Doesn't mean that you just have to grin and bear it
If you always take it on the chin and wear it
Nothing will change.

'Cause if you're little you can do a lot, you
Mustn't let a little thing like, 'little' stop you
If you sit around and let them get on top, you
Won't change a thing!

Just because you find that life's not fair, it
Doesn't mean that you just have to grin and bear it!
If you always take it on the chin and wear it
You might as well be saying
You think that it's ok
And that's not right!
And if it's not right!
You have to put it right!

But nobody else it gonna put it right for me!
Nobody but me is going to change my story!

You can listen to it here if you have 4 minutes to spare! The girl playing Matilda was 10 years old and was truly amazing.

http://www.youtube.com/watch?v=dExxFRTwBsw



So thank you to all of you who are helping us to change Clay's story.

Mary

Another MRI

Clay had his 26th MRI last week. We know, or at least recognize, all of the anesthesiologists and the recovery nurses at this point. We get the first appointment of the day so Clay doesn't have to fast for too long. And this has become part of our lives.  But our frequent-flyer status doesn't really make it less stressful, and waiting for the results makes for a few tense days. So we were very happy to hear our second-favorite 6 letter word on Tuesday: S-T-A-B-L-E.  (Our favorite, if you didn't guess, is S-H-R-I-N-K).  So we start year 2 of this trial with another month of pills. 

The clinical trial Clay is on is having a positive impact on the 5 other children as well, and they have opened up the trial to 6 more children (an informal "phase 2"). As the trial goes on, however, they are discovering some more serious side effects than getting blonder hair. One is muscle break down/general weakness, and the other is heart irregularities.  So they will start monitoring all of the children more closely for these side-effects, and we will hope that Clay continues doing as well as he has been.  The next MRI is in December, and we are going to try this one without sedation.  It will be two hours in the "tube" for Clay, but at this point he seems up for giving it a try.  That should cut a few hours off the experience, spare him the side effects of sedation, and require no fasting.

I should be prepared for the tough conversations that usually come when we are driving, but somehow they still catch me off guard.
"Is my tumor gone, Mom?" Clay asked me from the back seat.
I told him a version of what the doctor had just told me: "No, not gone. It might never be gone, but as long as it is dead we don't care."
"What about my eyes Mom, are they going to get better?" he followed up.
"The doctors don't know Clay. It could happen, but they just don't know."
Long pause.
"I'm going to have to live with someone then, my whole life." he said, kind of quietly.
"I don't know Clay, you can live alone if you want to." I started, gathering my thoughts. "Anyway, most people live with other people. After college I lived with friends, and then I got married and lived with Daddy. So, lots of people never live alone. But if you want to you can...your friend Pat Leahy lives alone."
"No, he doesn't Mom. He has a dog." Clay corrected me.
"Oh, that's right. Well, you can get a dog." I said.
"Really! A dog? Yes!" Fist pump in the air in the backseat.

Back to School

First, thank you to everyone who spent days voting, trying to vote, watching the "vote for Marty the SMARTbrailler" numbers like it was a Presidential election, e-mailing me to let me know you were voting, and being frustrated because Clay was stuck in 3rd!

Clay did not win the brailler, but there is an upside to this.  Perkins (manufacturer of the brailler) took my advice and is offering the brailler to the remaining 5 children at a $500 discount.  But, the most amazing thing is that the other families immediately went into "fundraising mode" and they have enough money raised to buy their children braillers.  One of the children's relatives reached out to me, and they are "paying it forward" to give Clay the extra money so he will also be getting a new brailler with the overflow funds courtesy of the kindness of strangers who are now "virtual" friends. 

School is off to a great start, and Clay is doing well carrying his backpack with the old, heavy brailler inside.  Once the SMART brailler arrives we will be able to get him a smaller bag, which will be a big help, particularly when he is trying to climb the bus stairs.

Clay had his monthly check up the day school started.  He is on his 12th month of pills, and he will enter into year 2 of the clinical trial next month after his MRI.  His doctors asked if we would like to stop the medication.  Of course I thought I heard them incorrectly.  It turns out they are required to ask if we would like to stop at the one year mark.  None of the four parents on the trial are choosing to stop, as each child is having a good response with very few side effects.  The great unknown and the potential reason for stopping is that this drug has never been testing on children Clay's age, so they have no idea what the long term side effects are.  Of course this is terrifying to me, but not as terrifying as going backwards to where Clay was before this medication pulled him out of the downward spiral he was on.  So we continue, and we hope and pray that his blonde hair is the only price he will pay for getting a second chance. 

Send the SMART brailler to Clay

Voting to send the Perkins brailler home to one of the six children who tested it out this summer is now live. Voting will be open until Sept 8 and you can vote once a day.  Please pass the link along to friends who might be interested in voting for Clay. Thanks!

Vote for the Derderian family at   www.wonderbaby.org/backpacking-smart-brailler-vote

Chillin in Maine

Hello from Maine! We are having a wonderful August enjoying beautiful weather and a relaxing spot on Sebago lake where the biggest decision required of us is when to take out the kayaks. Clay is feeling good and is enjoying swimming at one of the 13 beaches that ring the island.

Wi-fi works well here and we got word that voting to win the SMART brailler will begin Monday. The contest is being set up so people can vote once a day, from Monday until around September 8. You can read about the 5 other children in the race to win the brailler here: (scroll down once on the page).  Of course every child should have access to whatever aid will help them learn Braille, and right now this new brailler is the best option. It is no iPad, but it is the best brailler.  So please cast your vote for Clay. I am hoping all of the kids will get offered a discounted price from Perkins, but only 1child will get the brailler outright.

http://www.wonderbaby.org/articles/backpacking-smart-brailler-event

I will post the voting site link on Monday. I hope everyone is enjoying these last few days of summer.

Goodbye Marty!

Today we dropped Marty the brailler at the UPS store to send him on his way to the 6th and final child who will get to test out Marty for a few weeks.  You can read about this child at the bottom of this page:
 http://www.wonderbaby.org/articles/backpacking-smart-brailler-event

Clay took Marty to summer camp at his elementary school the past few weeks where his braille teacher met him for a few sessions of braille practice. It was great having the SMARTbrailler be part of this.  In just a few weeks Clay has really adjusted to having a brailler with audio feedback. It will be difficult to give that up and go back to the old style non-verbal brailler in September.  The new brailler has really encouraged Clay to communicate -- he wrote my brother a birthday card, and he wrote me notes on his activities one day that I was out of town.  (Roasting marshmallows in July, Clay?!) It will also be difficult for me to not have Marty around, as I have been using the brailler for my course,  Introduction to Braille.   It's been great to have something everyone in the family can use.

Yesterday Clay had a few friends over to see what he has been doing in braille.  He showed them some non-contracted letters and they each enjoyed seeing him spell out their names.  His buddy Nick has been trying to figure out how he could learn enough braille to write Clay notes!  Here is a short video of Clay giving a demonstration.  (My video skills are about as good as my braille skills, so forgive me!)  I think a great feature of this brailler is the pre-loaded app that gives letter and word quizzes.  They encourage independent use of the brailler, and with the cheering voices, they are also fun.  They are perfect for children learning to read and spell, exactly right for a child Clay's age.

We will post again once the contest to win Marty goes live in September.  

 

If you want to learn more about this tool, it can be found here: http://www.perkins.org/smartbrailler/

Inspiring Role Model

If you live in the Washington area you may have seen this article in the Post Magazine a few weeks ago.  If you haven't seen it, it is a wonderful story and worth your time to read it.  http://www.washingtonpost.com/lifestyle/magazine/bodybuilder-pat-leahys-lack-of-sight-doesnt-affect-his-vision/2013/06/05/c9040f42-b9bb-11e2-92f3-f291801936b8_story.html
After reading the story I thought this was just the type of person to be a role model for Clay.  Fortunately the Post put me in touch with Pat, and he agreed to spend an afternoon with all of us recently.  We joined him and his guide dog for lunch, and then a tour of the gym where he works out.  It was a great afternoon for us all. Pat is funny, kind, and inspiring.  He uses technology more than anyone I know and he told us about some great iphone apps -- including one that identifies colors (useful for getting dressed), and one that can tell the denomination of money (useful for not getting ripped off!).  Pat spoke easily with Clay and Grace -- probably because he has a niece and nephew almost the same ages.  He taught us a bit about guide dogs, and Clay was happy to meet a dog who has a purpose other than jumping on him (unlike our terrier Pearl).  He showed Clay which machines he works out on, and Clay was in awe of the sled that Pat pulls across the gym with heavy weights riding on it.  Clay loved the rope machine that simulates the moves necessary to pull up as if scaling a wall.   Pat works full time, but is also working on a documentary that focuses on getting children with disabilities to use exercise as a way to strengthen themselves physically and mentally.  I overheard Clay telling his camp counselors this week about Pat. I also heard Clay saying "feel my muscles...I've been working out in a gym!." Here are a few photos from our visit with Pat.