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.

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

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!

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

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