First MRI on new trial

Clay was to have his first scan since beginning this latest experimental protocol on December 22 but due to him having a cold the Docs postponed it until December 24.   So Clay, JD and I spent Christmas Eve day at Childrens' Hospital listing to the whirring of the MRI machine.  We met with Clay's oncologist on December 26 to review the results.  The doctor is "encouraged" primarily by the lack of enhancement on this scan.  Enhancement indicates tumor  activity,  the more active the tumor  the more contrast dye it attracts which appears as white on the otherwise black/gray scan.  The last MRI in October showed lots of white areas in the main tumor.  This MRI showed much less white. So the Docs feel this reveals the medicine is doing something to the tumor.  It will take another MRI to tell if we will get shrinkage.  Unfortunately shrinkage is what we need if Clay is going to experience any improvements in his symptoms such as his facial palsy, spinal fluid blockage or  especially his vision, which is of course what I (and many others) have been praying for.  Clay's adaptation to his blindness has been slow and halting.   For the first time in the nearly four years of his fight Clay seems discouraged.   He is truly grieving this huge loss in his life.  And nothing drives home knowledge of this loss more than the Christmas season which is filled with so much visual stimulation.   He has received many wonderful gifts from family and friends that are geared to a blind person.  In fact, one family who saw the Post article is having their children read chapters of books and are e-mailing us audio files.   But Clay has not yet "embraced" a blind life, and to be honest we are not there yet ourselves.  So for now Clay will remain on this drug trial with some notion that it is providing some benefit and our hope it will produce the shrinkage he needs to give his vision a chance of returning.   

Happy Birthday Clay

Today Clay is 7.  To celebrate his birthday we are going duckpin bowling with a few friends of his.  Our family did a test run last weekend to prepare him, since every new situation is challenging for him without his sight.  By the end of the game he was throwing the ball down the lane, but at first he refused to bowl.  Bowling, especially duckpin, is a good activity because of the audio feedback--he can hear the pins go down.  For his school class treat today he requested cookies from a nearby French bakery, and tonight we are going to dinner at a Mediterranean cafe that is his new favorite.  His taste buds, along with his hearing, are working extra hard these days. 

Both Grace and Clay are going to Sunday school each week at our church where they have wonderful teachers. Clay's teacher has her 6th grade son come in each week to be Clay's buddy, which makes him look forward to class.   In preparation for Christmas they were asked to write letters to Jesus, and I was touched by the beautiful simplicity of Grace's:

Dear Jesus,

Thank you for... my parents, my brother Clay, my grandmas, my cousins, my uncles, my aunts, Katie, enough food to eat, Abby, good books, ice skating, clothes, my dog Pearl, Laser tag, softball, animals, Christmas, God, Thanksgiving, and my Birthday. 

 Love, Grace

What touched me about Grace's letter is that she included mostly people and activities, not things (not even her ipad...wow).  It reminded me of the book by Robert Fulghum, All I Really Need to Know I Learned in Kindergarten. Here is a bit of his poem:

Most of what I really need
To know about how to live
And what to do and how to be
I learned in kindergarten.
Wisdom was not at the top
Of the graduate school mountain,
But there in the sandpile at Sunday school.

These are the things I learned:

Warm cookies and cold milk are good for you.
Live a balanced life -
Learn some and think some
And draw and paint and sing and dance
And play and work everyday some.
Take a nap every afternoon.
When you go out into the world,
Watch out for traffic,
Hold hands and stick together.
Be aware of wonder.

So to Clay, my beautiful, kind, amazing boy, who has already taught us more of these lessons than a lifetime ever could, Happy Birthday. 

Thanksgiving

It is easy to find things to be angry about, things to make me feel like God is not paying attention.  A glance through the newspaper shows so many stories of sadness and horror both close to home and worldwide.  I look at the photos of Clay that hang in my study and I can not bear seeing what he has been asked to bear.  But then we have moments like this, and I am thrown back into appreciation of all that we do have -- that we still have each other at all.

We had an early morning appointment today at Children's Hospital to go over Clay's blood work and do his weekly check in.  This is all standard by now (even the 30 minute wait in the waiting room no matter what time we arrive) and Clay and I joked about how fast the phlebotomist drew his blood ("Mom, he must have had A LOT of coffee this morning he was moving so fast!").  Then, two hours later, a second appointment with Physical Rehab to discuss doing electric stimulation to his face to help the palsy that is Clay's latest symptom.  After this, we got a snack in the atrium and made our way back to the garage, back to the car, back towards home.  Soon after pulling out of the garage, we heard a siren. 

"Mom, what is that, an ambulance?"
"Yes."
"Mom, which way is it going? To the hospital or away?"
"Sounds like to."
Long Pause.  "Mom, that is so sad. What do you think happened?"
"I don't know Clay, but at least they will be in good hands at the hospital."
"Mom, do you remember when I went blind, Dad was my ambulance."
Long Pause. "I remember."

A few hours later, back in the car, running to another appointment for Clay.  Grace is with us this time, and we are chatting about something else, something "normal."  Clay interrupts the conversation:
"Mom, you know what I am thinking about, right?"
"Well, no, not really Clay."
"Yes you do, it is from before, remember?"
"The ambulance?"
"Yeah Mom, I am so sad about that, I can't help it, I just am. I am so sad for that person."

I told him I had read a book where there was a prayer to say when ambulances go by.  Here it is:

 Siren Call
"God grant courage to those who suffer
Strength and peace to those who help."
Amen.
(by Kate Braestrup (http://www.katebraestrup.com/-- Marriage and Other Acts of Charity)

Her simple prayers have become some of my favorites. This has become our dinner prayer, which Clay is happy to say most nights.

For the food before us,
And the family beside us,
And the love that surrounds us
We are truly grateful.

Happy Thanksgiving.

--Mary

9 Days In

Clay started the clinical trial last Wednesday, a day late due to hurricane Sandy.  My Mom joined us and we settled in for an 8 hour day of almost hourly blood draws (to see what the absorption rate of the medicine is).  The first month on this trial requires weekly examinations and one more long blood-draw day (next Tuesday). Then, if all goes ok, just monthly exams.  Today was one of the check-ins, and Clay is tolerating the medicine very well. He has a good appetite and is feeling pretty good overall.  Two pills twice a day -- easy compared to the other protocols Clay has endured, and at this point he is a "master pill swallower" as he tells everyone.

A huge thanks to so many people who who joined in on the golf fundraiser last week in Richmond!  Particular thanks to organizers Dave Ong, Brian Betz, and Mark Guarino.  This was an amazing show of support and will allow us to fund the project at Johns Hopkins.  More on that to come.

The Big Mo!

On Wednesday we received a voice mail from Cardinal Wuerl (in Rome for the Pope's canonization of 7 new Saints) in which he expressed his concern for Clay and shared that he would dedicate to Clay the Mass he was leading in Rome the next morning.  On Thursday the Washington Post featured an article with a photo of Clay and Mary which did a great job of raising awareness of this awful disease.  And on Friday we received confirmation that Clay had been accepted for enrollment in the study of an experimental therapy that has shown some promise.   Clay will begin this protocol on Tuesday provided the Potomac does not rise too much.   Lets hope this is the start of a long stretch of good news.    Thank you all for the support and the prayers.


Article in the Washington Post:

//www.washingtonpost.com/lifestyle/home/clay-derderians-bedroom-commemorates-hismake-a-wish-trip-to-the-florida-keys/2012/10/23/6d99d5c0-1a1e-11e2-aa6f-3b636fecb829_story.html

Oct 22

 

JD here.  The last six weeks have brought little positive health news for Clay, much confusion about next treatment steps, and numerous examples of the goodness of people and the presence of God in our lives.   Unfortunately, there has been no improvement to Clay's eyesight. His most recent MRI showed some new disease activity that led Clay's team of doctors to conclude that the latest experimental therapy being administered at the University of Pittsburgh had failed.   The plan was to enroll Clay in yet another experimental drug trial (this one can be administered by Children's National so no long distance travel) but the day before the process was to begin he developed partial paralysis on the right side of his face.   Adding insult to injury Clay now has a "droop" on the right side of his face and it slurs his speech.  Since the protocol for the study requires the patient to be "neurologically stable" for seven days, this latest event forced us to give up Clay's "slot" in the trial.  The past week has been filled with countless phone calls and emails as we and Clay's medical team have worked to get the author of the study to create an additional slot for him.  Clay's doctors (Drs. Packer and Jakacki) have been particularly aggressive in using all of the influence at their disposal to help, for which we are very grateful.  We learned yesterday that the study has been enlarged to include Clay.   Of course he needs to remain "neurologically stable" until Thursday morning to be able to qualify.   We are holding our breath until then---while this therapy has not yet been tested in children under 12 years old, the results have been very positive for some of the children 12 and over.  While the promise of this experimental therapy gives us new hope we are constantly aware that we are running out of "tools in the tool box" to use to help Clay.

While the medical situation is as clear as mud Clay is doing his best to adjust to his world without sight or light.  The Jamestown School has been very responsive and has established a special education program for Clay that allows his to go to school from 9am-1pm.   To help Clay socialize his teacher instituted a plan to have a few children from his class join Clay for lunch.  We learned at Clay's teacher/parent conference that instead of this being a bother for his classmates, his teacher is having to set-up a rotating schedule to handle the demand to join his lunch program.  His classmates have been welcoming and understanding -- showing a level of empathy and support well beyond their 6/7yrs of age.  Of course these latest setbacks have caused a new level of frustration for Clay, yet, despite all of the pain and fear his spirit remains strong.   Example:  "Dad, I had a great day today; I learned 4 more braille letters!"  We thank God every day for giving us Clay.

Golf Fundraiser for Pilot Program at Johns Hopkins

Some good friends in JD's college fraternity have put together a golf event during the University of Richmond's upcoming Homecoming Weekend in early November.  The link is below: 



http://www.firstgiving.com/fundraiser/lxagolfouting/LambdaChiAlphaGolfOuting

100% of the money will go directly to a project at Johns Hopkins that we are piloting to begin to build a mouse model for the type of brain tumor Clay suffers from. This is the first step in developing a better way to test protocols.  Please follow the link and read about the work that we hope will begin soon at Hopkins.  And thank you for any help you might be able to offer -- the fundraising is open to all, not just golfers and not just fraternity brothers!

We have been busy getting services lined up to help Clay acclimate to school. He still has no vision.  Our school district has been very proactive, and now Clay travels with a posse -- an aide who is at school whenever he is; a mobility specialist who helps him with cane and navigation skills, and a vision specialist who has started Braille lessons.  Also occupational therapy and physical therapy. 

Clay has an MRI on Friday.  We are praying for shrinkage, which would allow Clay to continue the trial he was on.  Please "storm the heavens" for Clay on Thursday night in your prayers.

Thank you for the cards, food, presents, visits, relics, and continual outpouring of love and support you all have given us.   It is what keeps us going many days.