Monday, March 24, 2014

3 More Months

The results of the MRI were stable, with some discussion about increased enhancement on a few spots. Reading MRIs, we now know, is more of an art than you might imagine.  But it is more tense than normal when you are on a clinical trial where the rules are very exact.  Regardless, Clay was cleared to stay on the trial, and so we march forward another 3 months until the next MRI.  His heart test was also stable.  Three more months and school will be out (maybe, unless we get another snow storm).  We have a lot of work to do to prepare Clay for third grade, when reading becomes much more important to keeping up in school.  But we will get there! Thanks for checking in.

Friday, March 7, 2014

Another MRI Ahead

Time is marching on and we are in month 18 of the clinical trial. Next Saturday, March 15, Clay will have a MRI.  On Tuesday he will have an echogram of his heart to make sure the pills are not doing any damage.  Please keep him in your thoughts and prayers for both of these tests, so he can stay on the medicine and finish up 2nd grade.  A bit of good news is that last month we had a full audiology exam done, and his hearing is perfect.  I was very worried since he has had regular MRIs since he was 3, and they are extremely loud exams.  From now on he will be armed with heavy duty ear headsets during the exam to protect his hearing.

Clay has been working hard at learning to read and write in braille.  He is now spending two hours a day in school on this task, and he is making good progress.  I am so proud of him, and it is amazing to watch him feel the pages of a book and make words and sentences out of the braille dots.  He is also doing well in math, also learning to do this in braille, and he is working on the same second grade material as his peers.  It is our hope that in third grade he will only be pulled out for reading and braille, but will do math with his regular class.  The Smartbrailler makes this integration into the regular classroom much easier. For now the school is using our brailler, but we hope they will provide him with one next fall. 

As part of his lessons he has vocabulary words to learn to spell each week.  This past week's words included "fate." He asked me, "Mom, what is fate?"
"Well," I explained, "it is what is most likely going to happen in the future."
"Oh, I get it, " he said, "like: It is my fate to get singing cards."
"Right," I said, happy for this new phenomenon in the greeting card business.  And, thankful for a simple definition for a difficult concept.

Monday, January 27, 2014

Keeping Warm and Catching Up

With the kids home from school for the past two months it has been hard to do much writing, or much of anything, except make hot chocolate and wrestle to get the remote control (to hide).  Today is the first day that I am optimistic that the kids MIGHT be in school for five days, weather-willing.  I pulled out a pile of paper that had been calling my name, and started to work on reducing the stack.  Then an e-mail came in from Snapfish, reminding me that I wanted to get copies made of a few recent photos.  Two hours later I had downloaded 1,300 photos.  That was not my intent, but that is another story.  Well, if you Give a Mouse a Cookie...the story goes, and I ended up looking through too many of these 1,300 photos.  Don't worry, I won't make you do the same, I know your time is precious too.

But just a few.  These were taken in Georgetown on March 3,  2010, when Clay was 4 and Grace was 7.  Clay had been diagnosed a year before, and I think I was in still in shock, alternating between feeling like the worst possible thing had happened, but also feeling like we would get through this unscathed.  Now I look back on these photos and think, at least in part, what happy days these were.  Then, I had no idea how resilient we would have to be, and I had no concept of how strong our will to survive is.  Since these photos were taken I have learned that today could be the best day.   A few summers ago I was sitting at the beach watching Clay float around on a raft in the ocean.  It was a rough summer as his tumor was growing, and he was suffering bad headaches and nausea.  My friend sitting with me said, "What if this is the best you have?" I remember being shocked that she said that to me, and feeling angry that she thought that was a possibility.  Now I realize that that was a brave and a wise thing to say to me.  A reminder to savor each day.

Four years later we have new challenges to overcome, but we are grateful every day for how well Clay is doing.  His energy is good, and he has been focusing hard on learning to read and write in braille.  
Miraculously, he continues to see in his heart what the rest of us sometimes forget to notice.  On Christmas night, Clay said to me, "Mom do you know who would have thought this was the best Christmas ever? Grandpa Ed." 
"Why? Why this Christmas, Clay?" I asked him.
"Because I got so many cool models.  Grandpa LOVED models!" 
Grandpa Ed, who died when Clay was 5, was an exemplary model builder. 

On the medical front, Dr. Raabe and the researchers at Johns Hopkins are continuing to publish news of their work on low-grade gliomas.  Here is another recent update from his group:

We will be attending a special fundraising event in February, "Belle Notte" to support pediatric brain tumor investigations at Children's National as well as the pediatric developmental neurobiology initiatives at the National Brain Tumor Society. A main goal of both of these groups is to find therapies to help children survive their brain tumors without devastating long-term side effects from their treatments. Clay's doctor, Dr. Packer, will be calling Clay and several of his other patients up for a special recognition at the event. 

Time goes by so quickly.  I am going to take our dog Pearl's advice and go find a warm spot by the fire.

Friday, December 20, 2013

A Happy Birthday

We celebrated Clay's 8th birthday last weekend with a few of his friends at the Melting Pot, a fondue restaurant.  We had been there once before, when Clay had vision, and he had good memories of dipping, cooking, and eating the food.  That first visit was with family; this birthday visit was with 7 kids.  The whole hot-oil and timing how long your food is cooking (really, asking kids to cook their food for 2 minutes without a timer?) took on a new level of challenge, but we did it, and everyone had a good time.  They spelled his name out in brownies for part of the dessert. 
On Monday Clay did his first MRI with no anesthesia.  It was a long day at the hospital, made longer by a traffic delay due to Michelle Obama's visit, along with her dogs, to read Christmas stories to the kids in the lobby. (No, we didn't see her). This was the first time that I joined Clay for the two hours in the MRI room.  Clay had an audio tape to listen to, but nonetheless, it is two hours of listening to very loud knocking, whirring, and occasional jackhammer noises.  All while lying perfectly still.  The scan quality deteriorated as the time wore on due to some motion on Clay's part, but thankfully they got what they needed and we are free for another three months.  Yesterday we reviewed the scans, and things are stable.  The doctors have been told to add some more "checks" for kids in the second year of the trial, and that additional monitoring will start next month.  Some children are having heart irregularities and muscle breakdown, so we will pray Clay shows neither of these side effects.

Dr. Raabe, the doctor at Johns Hopkins who is managing the research we (and many of you!) are sponsoring to help build a mouse model for Clay's disease, was covered recently on his research. You can read the article here:  It is crucial that other drugs be developed that shut down these tumor's pathway's without doing devastating damage along the way.  The drug Clay is on is one such drug, but currently only a handful of kids in the country are on this drug.  Since the long-term side effects are unknown,  its use will be limited to two years.  Currently there is nothing waiting in the wings for Clay when these two years are up.  So this research is the most critical next-step for kids like Clay.

My involvement in Clay's condition has been bumped to a new level as I just completed my first semester of a Master's of Education in Vision Studies program that will prepare me to work with children who are visually impaired.  My first courses were Introduction to the Visual System and an Audiology class.  These classes felt very much what I imagine medical school would be like, all filled with anatomy and disease.  I am excited that everything I am learning is going to benefit Clay and other children like him, and it feels good to be putting an official stamp on work I was already doing on the side.

We wish you and your families a blessed holiday. 

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.

Wednesday, September 11, 2013

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.