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. 

Sunday, August 25, 2013

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

Saturday, August 24, 2013

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.

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

Saturday, July 27, 2013

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:

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:

Saturday, July 20, 2013

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.
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.


Wednesday, July 10, 2013

MRI Update

On Friday, Clay had his 4th MRI since starting this clinical trial in the Fall.  Yesterday the three of us went downtown for Clay's monthly appointment and to review the results.  We pulled up the scans from October 2012 and from Friday, so JD could see the changes in one clear comparison. They are truly amazing, and a beautiful thing to see. No white spots (indicating tumor spread) no white enhancement (indicating tumor cell activation) no bulging tumor crowding out brain and fluid.  More black (fluid). More space -- literally, in Clay's brain; and figuratively -- for us all to breathe.  After seeing the smile on his face, Clay's doctor said to me, "This is why I get out of bed in the morning."  Amen to that.

Sunday, July 7, 2013

"Marty" is now a baritone?

Clay continues to enjoy working with Marty the SMART brailler.  All visitors get a preview and it is
funny to see how everyone enjoys typing out their name or some funny sentence.  (At left is Clay showing the brailler to his K teacher.)  It must be the spy-like code of typing in braille that keeps everyone interested.  As I continue with the course "Introduction to Braille" that I am taking, I learn new things that help me understand the braille code and how the dots make "sense."  For example, the first 10 letters of the alphabet in braille (a-j) are the same as the next 10 letters (i.e., a is the same as k), minus a dot in the 3rd cell.  The next 5 letters are the same as the last 10 corresponding letters, minus another dot in the 6th cell.  Of course, knowing this does not make it any easier to remember the letters, or to read them using your hands!  Clay helped me with my last lesson, "Using a Stylus and Slate."  Knowing how to use a stylus and a slate is useful for taking notes or for when there is no brailler around.  Here is the amazing thing--you must type the "mirror image" of the braille letter when using a slate & stylus, because after you create your note you flip it around to read it.  So once you have memorized the letter to use a braillewriter, you must "flip" it to use a slate.  Are you still with me?  I would make a terrible spy... 

Tonight when I was cooking dinner, Clay brought over Marty and put it on the stool he usually stands on when he helps me cook.  He sat on the floor at my feet and got to work using a few new features we discovered about the SMART brailler.  First, we changed MARTYs voice.  Trying out the different voices drove our dog Pearl crazy. There are two female voices and one male voice (Ryan).  We settled on Ryan.  Then, we discovered an "app" program for quizzing the braille user on letters and words.  This was much more fun for Clay to do than to have me standing there telling him what to type.  And, he was very pleased with the "good work" response after each correct answer and then at the end the cheering that came with his 100% score.  This is a great tool for teaching him to spell and braille at the same time.

Clay has camp at his elementary school for the next two weeks, and he will bring along MARTY for his braille lessons.  Then the brailler will be off to the sixth, and final child in the testing program.

Thursday, June 27, 2013

Marty Goes to School

Clay brought Marty to school for the last two days. He spent some time showing his math teacher what he was able to do, and then all of the TVIs (teachers for visually impaired) from our county came to see Marty and have Clay give them a demonstration! Of course they all all hoping Marty gets to stay here for Clay's second grade. It is a perfect time for Clay to be using this brailler since he is learning to read and learning to braille right now.  This brailler makes both tasks easier by providing him with immediate verbal feedback.  This allows Clay to work on his own, without needing a braille teacher to check his work. That is a huge benefit at this particular time in his development.  Here he is working with his math teacher doing some simple equations (each of the first 10 letters in braille are also the first ten numerals) and his name:

Grace also continues to use the SMART brailler. She stayed up late to type him a note to sneak in his lunchbox so he could read it with his teachers on the last day.  Marty is enough like a computer that it is fun for sighted kids as well.

To learn more about the brailler read here:

Thursday, June 20, 2013

Marty the SMART Brailler Arrives!

Clay has been watching the mail very closely for the past few days and he was not disappointed.  First he received a box with a Perkins backpack, and the next day he received the SMART brailler.  The backpack arrived, full of fun treats, on Tuesday.  Here is a shot of Clay getting his hands into the backpack.  It was filled with books, a jump-drive, and a few cool "friends" to hang around with while doing braille...

With the countdown to summer vacation on, he was thrilled to receive the brailler on Wednesday afternoon so he could work with it in school for a few days.  It is much lighter than the old-style brailler he works with at school, but still heavy for a 7 year old.  However, he managed without toppling over.

As soon as we got it out of the box we had it on the kitchen table.  After listening to about half of the 8 minute audio tour, he couldn't wait any longer and he just pushed the "off" button for the tour and started typing.  I was amazed to see him type his entire name without one error.  Of course I only knew there were no errors because the brailler announces each letter as you type, and then at the end of the word it speaks the whole word.  There are lots of choices to turn on or off the voice, to select the voice, to do contracted or non-contracted braille, to save your document on a flash drive, to change user profiles, and to review your document.  Very cool!  I immediately see the benefit of using this in a mainstream classroom environment like ours where the teacher does not read braille.  I was impressed to see Clay hit the button to show me contracted braille (like shorthand), and was happy with how proud he was with the verbal confirmation of his correct work.

Today Grace got involved.  She couldn't stand to watch him typing, so as soon as he took a break she took over and very quickly typed everyone's name in the family.  The best part as far as she could tell? "Mom, they pronounce our name right! Nobody ever does that!"  Here is a shot of her enjoying the secret-code concept of braille.  She does not know any of the braille alphabet, but this inspired her to learn it (with help of a braille alphabet sheet next to her) very quickly.

Two days in, we give it two thumbs up.  Clay has already asked if we can keep it for longer than our 2 weeks of the program. How great is that?

We will post back in a few more days.

To learn more about Marty you can go here:
To follow the route of Marty, you can go here:

Monday, June 17, 2013

Lunachick Victory...and Marty

Grace's softball team won the playoff game yesterday after a nail-biting close game with a final score of 7-5. This season has been filled with rainy days and lots of cancellations, so we were glad that both Saturday and Sunday's games got played.  Grace has really improved this season and she had great teammates and great coaches, so it was a wonderful way to end the season...with 2 trophies--one for the division league first place and one for the playoff win.  Here is a photo- Grace is bottom row one  in from left.

Now for Marty.  Clay was selected as one of six children in the U.S. to test out a new Perkins SMART Brailler (called Marty) in advance of its release for sale.  Four children have already had Marty in their homes for 2 weeks each, and Marty is currently on his way to us.  Currently, braillers are very much like typewriters, with six keys to make the dots for the six cell braille letters.  This new Smart Brailler has audio to provide immediate feedback, and lots of other cool features that should make learning braille much easier.  This link will tell you a bit more about the program, and you can also read about the other four families that have already tested out the brailler.  At the end of the program, readers vote for one of the children to keep the brailler.

I have just started an "Introduction to braille" class myself offered by the Hadley School, but I am only 1 lesson in.  So hopefully this will speed me along, as well as be a fun project for Clay and the rest of us.  I will be posting about our time with Marty so stay tuned...and if anyone wants to come by and see the brailler let me know.  
Marty the SMART Brailler

Friday, June 14, 2013

June 14

Thank you to so many friends and family who included prayers for Clay in their Sunday.  Thank you to everyone who has included Clay in prayer groups and prayer chains, masses dedicated to Clay, special prayers in baptisms, communions, and many other times that were supposed to be just about someone else's special day.  Clay has touched so many people in his short life, and hearing these stories reinforces that we are not in this alone.   One of his teachers wrote in a note to me recently, "Being with Clay makes my heart smile."

The service on Sunday was easier than I had expected because as soon as they signed us in they told us that children get prayed upon first.  So after about an hour of listening to a spiritual talk and hearing stories of healing, we were led to the front of the room and Clay was third or fourth in line among other families bringing children for healing. 

So now we wait, and we pray that we start to see positive changes.  In Clay's monthly appointment Tuesday his doctors said he is looking fantastic.  His facial palsy has almost completely disappeared.  One funny story: we have been noticing that Clay's hair is getting lighter.  Grace noticed it first, and then other people started commenting on this to me.  He had lighter hair as a baby, so I just figured it was reverting back to blonde.  Anyway, one of the doctor's mentioned it also this week, and it turns out that the clinical study nurse has noticed it with one or two other patients, so going blonde is now classified as a "side effect" of the medication.  I am getting my prescription filled tomorrow!

Sunday, June 2, 2013

Special prayer request- for Sunday (not Saturday!)

I am writing today to ask for your prayers for Clay's health and specifically for the return of his vision. Please pray for him NEXT SUNDAY, June 9, in the morning.  We are taking him to a special healing mass with a doctor who has healed many of his patients and those attending his masses.  This will be a 4-hour service, so please also pray for Grace's patience (just joking about this one).  I was led to this doctor by an amazing book that details his relationship with God and his healing ministry that arose from his experiences curing some of his patients, and I feel like we need to bring Clay to him to experience this ourselves.  I am certain that God is evident in many people -- and in some, even more so-- and I am hoping to find that presence for Clay next weekend.  If you are in any prayer chains, please pass this prayer request on.  I have heard that the power of prayer is compounded when people pray at a specific time for a specific petition, and so that is why I am asking specifically for your prayers for Clay next Sunday beginning at 10 am.

We enjoyed a happy month of May and a wonderful  Memorial Day weekend.  Friends invited us out to their farm in Virginia, and the kids had a wonderful time making friends and exploring the beautiful property.  We attended a Nationals ballgame with an exciting inning where the Nats scored 5 runs. Finally, the pool opened and the kids enjoyed the first outdoor swim of the season (we sat nearby with jackets on). Clay has been feeling well and doing well in school.  He attended a class trip to the National Zoo, and he has been walking home from school one day each week with either me or his O&M teacher.  He is on month 8 of the trial and the doctors continue to be very pleased.  For this we count our blessings.

Finally, a little housekeeping-- I have had to turn off the comment feature for non-registered users of this blog.  Unfortunately, some people have started posting their business links or worse (far worse...) in the comment section.  Most of you e-mail JD or me your comments, but others leave comments here, so I did not want to turn it off completely.  So please keep commenting, but if you are not registered you will need to do so first.  Hopefully that will keep the "anonymous" posters away.

Thank you in advance for your prayers for Clay next weekend.

Tuesday, May 7, 2013

Race for Hope

On Sunday we joined 11,000 others, including a team of Clay's doctors from Children's Hospital, to run the Race for Hope 5k downtown.  The event raised over $2 million dollars for brain tumor research and there were 350 survivors participating, including Clay.  Grace and I ran the 5k while the boys walked. As Clay crossed the finish line they announced his name and time on the loudspeaker.  It was great to see a few friends participating in the race, including Ms. Foreman, Clay's special education coordinator at school. Here is the race's website if you want to see more information about the event or a few photos.

Thursday, April 18, 2013

April 18

Clay had another MRI on Friday and we went over the results yesterday. Although the radiologists are calling the report "stable" I saw the scan myself and it looks much better than stable to me (and to his doctors). The white spots (showing uptake of the dye) are smaller (or gone in some spots), and the tumor in his brain is skinnier and is leaving more areas of normal brain tissue around it.  We compared this latest scan to October and also to February, and there is consistent shrinkage and decreasing enhancement.  So we now go to MRIs every 3 months instead of two.   Clay continues to feel great and we notice a real difference in his interest in school and ability to focus.  We also had an appointment with the neuro-opthamologist. We were hoping to get some indication that the optic nerve is transmitting light, but that does not seem to be the case.  We are not giving up hope here, and neither is Clay.  If you are praying for Clay, please pray that he gets restoration of his vision.

Last Saturday night JD and I took Clay to a healing mass.  It was a wonderful experience, and it was very different from most typical Catholic services in that there was a band playing, people singing, arms and tambourines waving.  After the Mass, people got up to give testimonials of their healing.  After this, the Priest attended to anyone who wished to have a laying of the hands.  We waited for about an hour to have the Priest come attend to Clay. 

On our way out, Clay was walking between JD and me and he said to us, "Has your heart ever hurt so much it felt like it was going to burst?"
 I said, "I'm not sure, exactly, what do you mean?"
"Well, mine feels like that, like it is exploding inside, and it is going to break into two pieces, split right down the middle."
 I looked over at JD, wondering if Clay was feeling sick or where this was going. 
"Why does it feel that way Clay, what do you think is wrong?" I asked. 
"It is going to explode because I am just so happy," he said, "because I have Daddy and I have you in my life." 
We feel exactly the same way.

Wednesday, March 20, 2013

Monthly check in

Yesterday Clay and I had appointments with his oncology team as well as his physical therapist.  He received medication for the next month, which is Clay's 6 month on this trial.  Physically he is doing great - he has regained most of his facial movements and he has gained weight and height in the past month.  The doctors are working on approval to get this medication into a Phase II clinical trial.  This is a very positive note and means that they are seeing enough response with no debilitating side effects from the 12 children currently in the Phase I trial (Clay being one of them). 

Clay is adjusting to a longer day at school.  He is doing very well with his new Braille teacher who came to Arlington after teaching for years in a school for the deaf and blind.  She told me the hour she spends with Clay each day is her favorite hour of the day.  Clay sent me his first e-mail from school the other day: "hi mom this is your buddy. see you soon."  He has an iPad, a laptop, and a brailler at school and he is learning to use all of them.  Braille is important so he can learn to read and write; but keyboarding on a computer is going to be the easiest way for him to communicate with sighted-teachers and pretty much everyone else he needs to communicate with. 

The best thing about today is that Clay is feeling so well, and the worst thing is that he cannot see.  We are praying for a cure, for a miracle, for an intercession from God to restore Clay's vision.  I know it can happen and I am hopeful it will happen for Clay.  Each day brings challenges, but also laughter and happiness.  The other day I came upon Clay in the kitchen where he was petting one of his small stuffed animals, and saying "I miss seeing you" to it.  Tears of sadness came to my eyes.  Then, later in the day, we were in my bedroom when Grace came running in.  She jammed her toe on the door frame, and started crying.  Finally, through sobs, she said "my little toe, I jammed my toe..." to which Clay replied, "Oh, I know Grace, that hurts so much, I do that all the time now!"  We all laughed, most of all Clay.   His positive spirit continues to lift us all.  It will be four years on Easter Saturday that Clay has been battling this tumor. 

"Survival activates miracles when a person relies on the graces of hope and faith." - Caroline Myss

Saturday, February 16, 2013

A step in the right direction

Clay's nurse sent us an e-mail just hours after his MRI yesterday saying the preliminary radiology report shows less tumor bulk in the brain and spine than the last MRI.  Finally a step in the right direction! We believe this is evidence that God is hearing ALL of our prayers.  Thank you!

Wednesday, January 30, 2013

Jan 30

For those who look for regular posts, sorry for the gap.  It has been a month filled with ups and downs, but just in the past week or so the balance is changing for the better.   This past weekend I heard Clay and Grace upstairs playing together, and laughing.  It was the best noise I have heard in months. 

We had two bad weeks recently where Clay was struggling with weakness, dizziness and loss of balance.  The doctors attributed it to the syrinx in his spine.  We met with the neurosurgeon at Children's in case emergency surgery became necessary.  Fortunately (I don't get to use that word too often), the symptoms disappeared without any medical intervention.  Mostly the doctors just shake their heads, as Clay is truly "an N of 1" to recall the old math equations (n=1).  He has so much going on in his little body, and it is seemingly impossible to connect the dots, even for the most experienced doctors.  It reminds me of some version of the joke "how many doctors does it take to change a light bulb...?" If I see 3 doctors to figure out what is causing Clay's problems, I usually get 3 different responses.  Another complication was just added to the puzzle --  a newly detected heart murmur, which was confirmed yesterday with an echo-cardiogram.  Apparently Clay has a mitral valve defect, which has recently worsened.  So we add cardiology to our list of doctors, and we add another appointment to our calendar, and another concern to monitor. 

Now for the good.  Clay is feeling more upbeat about life again and some of his old spirit is back. He has learned all 26 letters of the alphabet in Braille and they celebrated this accomplishment at school with a pizza party.  If you have ever looked at the Braille alphabet you will understand how difficult this is -- each letter is represented by some formation of raised dots in a grid of 6 cells.   Each week he enjoys a private swimming lesson in a beautiful, quiet spot, (thank you Maggie!), usually accompanied by just-baked chocolate chip cookies.  Clay loves the pool, as he feels freer and more familiar in water.  Last weekend, Clay attended a friends bowling birthday party.  And, on Monday we went ice-skating!  These activities might seem like small steps, but for us they represent a willingness to engage with the world again. 

Physically, Clay is feeling good. The medication is far easier on him than any others in the past, and swallowing pills is a breeze compared to an IV.  He has been dilligent in doing daily facial exercises, and some of his facial muscles are starting to recover. 

The next MRI is scheduled for February 15.  Please pray for Clay that this MRI will show the tumors are responding and are smaller in size.

-- Mary