Monday, October 28, 2013

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:

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:

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.

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


Thursday, October 3, 2013

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.