Sunday, July 20, 2014

Summer Update

Summer is passing too quickly. Clay has been busy and has had a few "firsts" recently.  Right after school let out he attended a week of summer camp at Columbia Lighthouse, in Silver Spring.  Each morning a driver picked him up and returned him home at the end of the day.  There were about 20 kids at the camp.  This is the first time he has attended camp for children with visual impairments, and I think overall it was a good experience for him.  For the final day of camp they performed skits, and of course Clay chose to tell jokes.  Besides swimming, they did adapted sports such as beep-ball (like baseball) and practiced their navigation/cane skills. 

Since then he has been doing twice a week swim lessons, and has made great progress.  He recently passed the "swim test" at our pool.  Here he is with his swim teacher Hannah, celebrating his feat.

Clay is also doing braille lessons a few days a week, and surprisingly is enjoying this as well.  He recently cleared out a shelf in his room for his braille books at his own request.  As I am also taking braille, we are good study buddies and sometimes I have to call him to help me with the braille page I am trying to translate.

A real treat was a recent Nationals ballgame with our friend Pat Leahy.  We got down onto the field to watch batting practice, and Clay and Grace enjoyed getting signatures from several of the players.  Clay's highlight was  having Ian Desmond give him his bat, pine tar and all.  Here is a shot of us down on the field.  Ian is 6'8" which is why I only reach his shoulder.  Grace is very into baseball these days so she is able to give Clay blow by blow details on what is happening on the field. 
Phase 2 of our research project at Johns Hopkins is underway.  A huge thank you to our friends who have helped move this along.  Dr. Raabe is pulling experts from several areas to focus on low grade gliomas, and his hope is to have a center at Hopkins dedicated purely to Clay's disease type.  We are not there yet, but hopeful that this will move forward in the future. 

We are vacationing close to Boston this August, and I will be able to get to my classes more easily, while we all enjoy some down time.  Clay's next MRI is in September, and then we face very difficult discussion on next steps.  Please keep Clay in your thoughts and prayers so he might have a good year as he starts 3rd grade this Fall.

Monday, May 12, 2014

Spring Update

We have been busy the past few months, with no emergency updates.  We enjoyed time with family from far and near over the Spring Break/Easter holiday, and most recently for Clay's 1st Communion which was Saturday.  We were so proud of him walking into the church with a buddy by his side.   His mobility teacher, Nina, met us at the church one day the week prior for a practice session.  Father Burchell prepared Clay to receive the Eucharist, by letting him practicing with an unconsecrated Host.  Saturday morning Clay said to me, "I am so excited today is my Communion! I wonder what the Host will taste like when it is holy!"  Here is one of my favorite shots:

The past month or so I have noticed Clay pushing himself to do more.  He now feels more comfortable going outside and navigating the yard.   For Mother's Day he asked if I would like him to buy me a coffee at Starbucks, and he, Grace and I walked the half-mile to the store.  After school he will often go down to the swing set and play.  He now swings like any 8 year old, and I have to restrain myself from asking him to slow down.  This is something Grace and he can still enjoy together, and as you can see, she keeps her eye out for him (when she isn't fighting with him).

Clay is feeling well and is now on month 21 of the clinical trial.  We are in conversations about our options for the Fall when Clay will reach the 24-month mark and be forced to stop the drug according to rules of the trial.  Our best hope is that there will be an addendum to the trial that will allow the children to be retreated with the same drug should they relapse.  We hope to know for sure within the next month.  At this point Clay has one more MRI in June on this trial, and then 3 more months of pills if all is stable.

As always,  there is lots of research to do.  I went to the Perkins School for the Blind outside of Boston recently, as part of my Master's program.  Technology has provided so many new options for people with low-vision or blindness, and I spent a day with the folks at Perkins who provide these tools, learning all about the products they offer (such as the Smartbrailler Clay uses).  On the way home I met with a researcher at Schepens Eye Research Institute.  Dr. Feng Chen is the lead researcher studying paths to regeneration of optic nerves.  There are several possibilities that are still in the early stages, but she is optimistic that they will find a way to regrow damaged optic nerves within the next decade.  It is just as complicated as bringing new brain tumor drugs to trial, but I left feeling thankful that science, and brilliant people like Dr. Chen, are working to find solutions for currently untreatable injuries and disease.

We have a research paper from Dr. Raabe on Phase 1 of the mouse-model project at Johns Hopkins, and I will post that shortly.  We hope to begin Phase 2 within the next month. 

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.