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.

September 17

Thank you to all our friends and family who have called, e-mailed, and sent prayers our way.  From all of our recent medical consults, this is what we know:  no surgeon recommends trying to remove the tumor.  The analogy I was given is that surgery would be like trying to "drain a bloody sponge."  We also are being told to hold off on surgery in October for the chiari (syrinx) malformation.  This too is likely to be too risky with the recent bleeding.  As far as further treatment, the doctors want to see what the next MRI looks like in about five weeks.  There is a chance we will continue with the vaccine trial.  There is also a new clinical trial opening up that may be an option.  As one of the doctors told me, "we really need a home run."

I recently read "Take the Risk" by Dr. Ben Carson, a neurosurgeon at Johns Hopkins well-known for doing surgery to separate conjoined twins.  He is a man of great skill and great faith, and he writes that before each surgery he tells the parents "Don't worry tonight, worry has never helped anybody. But let's both pray. There are a lot of things in life beyond our human ability, knowledge, and control.  But there is nothing beyond God." 

Whenever I am close to crashing, I look at, and listen, to Clay. He is the happiest person I know, yet he has been given so many reasons to be otherwise.  Today he started working with a mobility trainer to learn how to navigate with a cane.  I walked behind them as he told her jokes, smacked her ankles with his cane, and kept her laughing for the entire session.  He found a baseball on their walk, and in the car he told me, "This is my lucky day."  

Clay's vision

JD here---I write today to update you on Clay's condition and to respectfully ask on his behalf for your  prayers and positive thoughts.

This summer Clay has continued to struggle with the brain and spinal cancer that has challenged  him for the past 3 1/2 years.    The disease has continued to advance which has among other things created a partial blockage of the flow of his spinal fluid.  This blockage, called a syrinx, has led to an array of symptoms including poor balance (constant dizziness), diminished motor skills (tremors, slurred speech), odd sensations and pain (he experiences shrieking, intense pain on his right side whenever he sneezes or coughs) loss of appetite due to difficulty in swallowing (he is so thin now that you can see the shunt tube that extends from his head to his stomach in stark detail) and periods of great fatigue.

 

The past three months we have been consulting with pediatric brain surgeons throughout the country for a strategy to deal with his syrinx.    All of the surgeons agree that it is a risky procedure unto itself but that the chance of a successful procedure relieving the blockage is greatly diminished due to the likeliness that the disease infiltration is too great.  With that said,  Clay is scheduled to have this surgery on October 12 at Sloan Kettering Hospital by one of the surgeons who helped innovate this procedure because continued degradation can cause paralysis or serious breathing issues.    

Contemporaneously we have worked to get Clay enrolled in a clinical trial of an experimental peptide conducted by the University of Pittsburgh  that has shown some promise on another brain cancer type and  which is being extended to kids with Clay's type of cancer.    Clay has had two treatments under this protocol thus far which all agree is not enough to determine its efficacy.   We remain hopeful that this new treatment might be the one to beat back the disease in the long-run but in the meantime Clay has suffered another setback.

 Three days ago he complained of a severe headache and within 15 minutes he explained that "everything has gone black".   A trip to the emergency room for a CT scan revealed a hemorrhage in the area of the main brain tumor which is positioned right next to the optic nerve.    The doctors believe that the excess blood and/or the trauma has cut-off the optic nerve resulting in Clay's blindness.   While they are confident that the bleeding is "contained" they are less hopeful  about the return of any vision.  In attempt to "reduce swelling and give the optic nerve a chance" they have put Clay on powerful steroids for the next five days.    We are all very shaken by this development, including Clay, but he has not lost his sense of humor.   Yesterday Mary explained to him that she had a surprise gift waiting for him to which he responded:  "the good news is I won't have to cover my eyes!".

We intend to not rely only on steroids but also to add prayer to the treatment plan.  On our trip to Lourdes we FELT the power of combined prayer and we seek to enlist that same power for Clay now.    I know and appreciate that most of you have been doing this for Clay throughout the ordeal but ask for a special energy at this moment.   Would you please add Clay to your thoughts and prayers during this time?

PS---I am regularly amazed how Clay's suffering has provided numerous opportunities to see the goodness of the human heart.   Yesterday Clay's friend Nick Ambrozy who is born on the same day as Clay only a few hours apart and who has been Clay's buddy since Week Two asked me how Clay was feeling.   After I told Nick that Clay was having a tough time in the hospital he responded:  "I wish Clay was feeling better.   I would give all of the money in my piggy bank if it would make him better!"  

August 24

An update for everyone asking about Mousey: he and Clay have been reunited! Apparently he slipped out of the car at the Pittsburgh Zoo. It took a week or so but the zoo keeppers found him high in a tree in the Lion exhibit. After a short stay in the hospital, he was returned to Clay via taxi! He has a few scars and his arm was in a bandage, but otherwise he is just like new ;)  Things would not have turned out this well years ago before Google Translate and a French website that sells discontinued loveys...
Even better, (thank you Betsy), Mousey has a friend he met in the hospital, affectionately named "Mousey backup" by Clay. 


Fortunately Mousey arrived just in time to catch a plane to Maine, where we enjoyed a wonderful week on Sebago Lake.  Clay was able to join the kids camp program each day, and also enjoy some of the night time activities as the resort assigned him his own camp counselor.  We also enjoyed a short visit in Portland with my brother and his family. 

On Thursday JD and Clay went on a very early flight to Pittsburgh for the second round of vaccines.  The doctor was pleased that Clay has remained "at baseline" since starting the trial.  The next visit in early September will include another MRI.  Because so few children are in this trial, we are not sure when we might see positive results.  One boy who responded did so in 6 weeks; another took over 4 months.  JD and I continued to talk to neurosurgeons this month, and we have a surgery date now scheduled for mid-October in NYC.  We are hoping that we will not need to keep this appointment, but we feel that should his symptoms of the chiari malformation worsen it will be unavoidable.  Now we are starting to think about school, and how Clay will manage navigating the building, taking the bus, and other things that rely on a good sense of balance and coordination that he doesn't have right now.  As is typical, Clay does not seem to have given it a second thought, and is looking forward to meeting his new teacher and seeing some friends. 

Pittsburgh Trial Started

It has been a busy month.  On the medical front we consulted with several of the country's top neurosurgeons regarding Clay's syrinx problem. None of them feel that surgery will be a definite cure to his symptoms -- they call his an "open up and see" case.  The chiari decompression is typically done to open up space in the brain stem, by removing the blockage and putting in a patch to provide more space. In Clay's case, they feel tumor is all tangled up in what they would normally remove, making the surgery more risky and a positive outcome less certain. 

In the meantime, we just yesterday were confirmed and started the Phase 1 clinical trial in Pittsburgh that I mentioned we were hoping for in my last post.  All the doctors agree that if this approach works, it could alleviate the syrinx issues and hopefully reduce the symptoms being caused by the syrinx (by shrinking the tumors causing the blockage).  It was a very long, tense day, because Clay was sitting exactly on top of the fence of being accepted or rejected due to the complicated nature of his case. The day started at 5 a.m., with JD and Clay walking over from the Ronald McDonald house (where the 4 of us had slept the night before) for an MRI.  Grace and I joined them just as Clay was waking up from the anesthesia.  Then, from 11 to 4 p.m. we met with the lead doctor and the medical team who will be our new doctors as we transfer Clay's care to Pittsburgh.  Clay received his first shot of the vaccine, along with another shot of ICLC, the immune-system booster that attracts the T cells to which the proteins hopefully bind.  As always our boy was a champion.  Dr. J told him "Wow, you are the best patient I have ever had!" and he replied, "I know! That is what all my doctors tell me."  We will go to Pittsburgh every 3 weeks for the shots, with MRI's generally done every other visit.  The biggest danger is that swelling will worsen Clay's already poor vision, so he will be watched very closely.  He is not allowed to have any chemo while on this trial, but they can use steriods if necessary.   Two children with similarly aggressive low-grade gliomas have had excellent responses on this trial, but the numbers of children in the trial are very small.  At the end of the day we had a difficult drive home dodging thunderstorms almost the entire way. 

Today Clay is feeling ok, with an achy leg as predicted (from the shots).  He is more upset, however, because Mousy (his much-loved stuffy, featured in several blog photos), seems to have jumped out of the car while we were in Pittsburgh, perhaps when we stopped at the Zoo.  Of course this mouse can not be replaced and Clay cried himself to sleep last night saying "I told him I would never leave him."  I started to cry as well.  Of course I recognize my reaction to this loss is silly, but I can not forget what comfort this mouse has given Clay during his surgeries, hospital stays, chemo sessions and difficult moments.  I am keeping my fingers crossed he will find his way back to us somehow.

 

June 25, 2012

Thanks for calling and e-mailing and praying for good results.  We met with Clay's doctor this week and while the tumor seems stable in size, it is "enhancing" more, which usually points to growth activity.  So not the news we were hoping for.  Further, the problem in Clay's spine caused by back up of fluid has gotten worse.  We are considering entering a clinical trial being run out of Pittsburgh that uses a new approach -- a peptide vaccine, matched to glioma associated antigens that are evident in some people with brain tumors. Clay tested positive for these factors, so we are in the process of getting all of his records sent to determine final eligibility.  If you are interested, here is some more information: http://journals.lww.com/oncology-times/Fulltext/2012/05250/Glioma__Pilot_Trial_Shows_Peptide_Vaccine_Active.7.aspx


We are also consulting with several neurosurgeons to determine if and when we should do surgery to remove the bubble of fluid in Clay's spine that is now causing him balance and coordination problems.  Like all the decisions were are forced to make, this is a difficult one due to the risks involved in spinal cord surgery.

JD is going to Toronto this week to participate in the International Symposium of Pediatric Oncology. The lead doctor on the Pittsburgh clinical trial will be there, as will most of the leaders in this field.  

Clay finished out his Kindergarten year of school with a musical and a fun filled last week.  Each child was awarded a certificate that highlighted what others in the class felt were their most obvious skills: funny, pretty dresses, strong, good at puzzles.  Clay's teacher broke into tears when she handed Clay his certificate and read his strength: COURAGE.  So much to ask for.

Mary

May 29

Thank you so much to all who were able to attend the concert at the State Theatre, and thank you to those who weren't able to attend but made a donation. We had a great weekend and enjoyed having both my Mom and JD's Mom here for the weekend for Grace's Communion and for Mother's Day.

After the long Memorial Day weekend we are settling into the summer heat.   Last week Clay and I took a quick trip to New York to meet with a Traditional Chinese Medicine doctor, who came highly recommended from a woman I met on the Lourdes trip. I had been searching for someone experienced in traditional Chinese herbs and tonics, and so felt this introduction was kismet. We had an interesting meeting and the daily tonic should arrive this week.  I am expecting it to be nasty tasting, and have already told Clay that he will have to think of it as drinking a crazy brew from Harry Potter... 

Clay's next MRI is mid-June and I will post an update then.  We are currently seeking second opinions on further procedures should we need them,  but praying that the word will be "stable."

Home

We were all sad to leave Lourdes.  Every day there included something wonderful, and each of us was touched by the specialness of the people and of Lourdes itself.  In a Mass at Sacred Heart Church (the site of Saint Bernadette's Baptism) the Cardinal said something that expressed exactly what I was feeling.  He said that "Lourdes is a place filled with so much suffering, yet it is perhaps the happiest place on Earth."  My words won't be able to compete, so I am going to show some of my favorite photos.

Blessed Mary Statue on the night of the candlelight procession

Thousands of people holding candles singing Ava Maria

Clay and I receiving medals from Cardinal Wuerl

Outdoor Mass at the Grotto

Grace is très français

The Domaine at night

JD rides with Clay

Clay charming one of the older Dames of Malta

The snow-capped Pyrenees

One of the many wonderful Dames

Looking at the town of Lourdes from the Castle

Some of the our teams Knights & Dames

We have a busy weekend ahead. Tomorrow, Grace will make her First Communion.  The timing could not be better -- after spending every day in Mass last week I have no doubt she will feel comfortable tomorrow.  Tomorrow night is the benefit concert at The State Theatre  (if you haven't bought tickets visit www.drumfishmusic.com )  And then on Sunday -- a day of rest  --  Happy Mother's Day to all the Mom's out there!

Mary

Hello from Lourdes!

We are in Lourdes and are overwhelmed with the beauty, symbolism, and kindness surrounding us.  This truly is a magical place.  The Pilgrimage started with a candle lighting ceremony after Mass in the Rosary Basilica, lead by the Archbishop of Washington, Cardinal Wuerl.  He saw Clay in the crowd and pulled him to the front to light the 100 pound candle, which will burn all week in the Grotto. Here are a few photos from that ceremony.

We bathed in the waters from the Grotto on our second morning, and we attended Mass this morning outside the Grotto. This is the site where Mary appeared on many occasions to Bernadette. At each Mass dozens of Priests participate, as well as a Cardinal.  Each Mass is specifically for the Order of the Malta.   Last night we participated in the Outdoor Marian Candlelight Procession.  Thousands of people, walking and riding in carts, move in procession in the main area called the Domaine, while the Five Mysteries are told (in several languages) and everyone repeatedly sings Ava Maria.  I have not seen nor heard many thing more beautiful and meaningful than this. 

Lourdes, France

We met with Clay's doctors last week to go over the MRI, and although the tumor is stable, a new problem has developed.  The tumors coating his spinal column have narrowed the passage where spinal fluid flows, causing a syrinx (a medical term for something like a cyst in the spine).   We met with a neurosurgeon and he outlined the surgery that is typically done to help alleviate this backup of fluid.  Unfortunately the procedure would not be straightforward for Clay, and the surgeon is not certain that surgery could successfully remove the syrinx.  We are feeling pretty beaten down with this latest news, and instead of celebrating stability we are back to getting second (and third, etc.) opinions on what to do.  Some syrinxs remain stable while others progress with debilitating symptoms, so we need to have our plan in place.

The four of us are going to Lourdes, France next week, thanks to our friends the Pizzano's, who put us in touch with the Order of Malta.  For anyone unfamiliar with Lourdes, it is where the Blessed Mother appeared to a French peasant girl (Bernadette Soubirous) on 18 occasions over a period of months in 1858.  Mary requested that people come to Lourdes on pilgrimage, which they have been doing for almost 150 years. Lourdes draws 6 million people a year, and it is second only to Paris in the number of hotel rooms.  The Church has recognized 68 miracles there, and the International Medical Committee of Lourdes has recognized another 2,000 unexplained cures.  The Order of Malta is a lay religious and Hospitaller organization that dates back to 1099 AD, and we are joining their annual pilgrimage.  We will visit the baths at Lourdes to bathe in the waters of the Spring, walk along the Grotto, and spend time in mass and other ceremonies.  If you are interested in reading more about the trip you can go to www.lourdes-france.com.  Grace is still hoping that we are joking about this, and that we are really going to Disneyland.  Truly, I am hoping to find some understanding, some peace, something, that will give me the strength that Clay needs from me in his journey.  When we told Clay's birth-mother about his diagnosis, and some of what we he had been through, she said, "Now I know why God gave Clay to you, it was so you could save him."  I hope with all of my being that she was right, and that God will hear us in Lourdes. 

Stable

The MRI reported that all is stable, maybe even slight shrinkage. We are very happy with this news and can now expect Clay will stay on the current protocol in some fashion for the next few months. Some children are staying on this protocol for up to 2 years. We count our blessings that this medication, Avastin, is available to us. Two years ago it was not out of clinical trials. We learned this week that the clinical trial we were hoping to enroll Clay in at Johns Hopkins has been canceled because too many children were progressing (meaning their tumors grew) while taking the drug. So we are thankful that Clay did not qualify for this trial in hindsight, but crushed that another treatment option is off the table.

Benefit Concert

The details for May 12 are set and the information and ticketing is here: www.drumfishmusic.com. There will be three bands playing at the State Theater that night, and proceeds will go to the PLGA foundation (now called A Child's Brain Tumor Cure) to sponsor research focused on finding better treatments for low-grade gliomas. As you all know by now from this journey with us, too little attention is directed to the tumor type that Clay suffers from, and too few clinical trials have focused on developing new treatments. Currently children like Clay have no options but to try one chemo protocol after another, trying to buy time to allow their brains to mature before facing radiation. The doctors and researchers believe better options exist, but there is a desperate need for funding to develop them and get them into clinical trials.

Thank you to my dear friend Sharon Grace for making the connection between a great band looking for a cause (Drumfish) and a great cause looking for an event (us!). If you are local and able to come we look forward to seeing you. Please also feel free to widen the circle and invite others to this event.

JD will take Clay tomorrow morning early for another MRI. We pray that the results will be stable and Clay will be able to continue on this protocol. We will post an update in the next few days. Thank you for your support and blessings.

March 14

Thank you to everyone who voted for Rex Burkhead -- he won!
http://espn.go.com/blog/ncfnation/post/_/id/59671/rex-burkhead-wins-uplifting-athlete-award

We are hoping this will generate some attention for funding more research for pediatric low-grade gliomas.

Save the date: on May 12 we are planning to have our own version of a charity 10K to raise money for PLGA -- but one that does not require running shoes! Instead, we are teaming up with 3 bands for a night of music at the State Theater in Falls Church. The lead band is drumfish and you can listen to their music at www.drumfishmusic.com. We are thrilled to be doing this event and hope many of you will join us. More details to come.

Clay has been feeling ok but the chemo is taking a toll on his stomach. He has enjoyed some recent tennis lessons and a field trip to the Air & Space museum, as well as a kids show of Aladdin ending with ice cream. We have given up sweets for Lent so he enjoyed this dispensation even more. I took him for a new baseline on his vision, and the doctor was pleased with his depth perception and color. His right eye is worse than his left, but it is far better than it was in December. The doctors cannot agree on whether the deterioration was caused by the tumor, or the drug we tried in December. But regardless, we feel it gives us one less option for treatment in the future, on the chance that it was a rare side effect of the new drug.

I hope everyone is enjoying this crazy warm weather (82 yesterday here) as much as we are. Time to dig out the summer clothes and see what fits.

Mary

Post-MRI

JD and I met with Clay's doctors yesterday to go over the MRI. The results were "good" in that the main tumor is slightly smaller than in the December MRI. Not "great" since Avastin typically gives the biggest shrinkage at the beginning of the protocol, and therefore the doctors' expectations were high. The tumor appears to have reconfigured, and pulled back from the optic nerve, which has allowed Clay to regain his vision. For now the plan is to continue the bi-weekly protocol and rescan in another two months. Next week the PICC line will come out. We are going to give it a go with doing future treatments with an IV. This will spare Clay another surgery, and the worry associated with having another foreign body in him (the port).

Please take a minute to cast a vote for Rex Burkehead, a running back for the Nebraska Huskers, for Uplifting Athlete of the Year Award. This award goes to the college football player that has made a lasting impact on a rare disease. Rex has befriended a boy named Jack, who suffers from the same disease as Clay. Their friendship has received some media attention already, which is helping raise awareness of both the disease, and PLGA -- the only group that is funding the research for low grade pediatric gliomas. If Rex wins, he will be featured on ESPN and numerous other national sports shows but MOST IMPORTANTLY he will receive his award directly from the National Institute of Health. This would be great for our cause and getting PLGA on the research agenda for the NIH and NCI.

The final award decision is based on total number of votes (there are 4 competing athletes). Between now and February 26th, you can cast your vote for Rex by going to http://www.upliftingathletes.org/take-action/rare-disease-champion (scroll to the bottom of the page to register your name and vote...It takes ONE MINUTE). Please spread the word and ask friends and family to do the same...)

As always, thank you for your support.

Feb 5

The past few weeks have been good ones, with Clay going to school most days. He has made some nice friends, and his teachers could not be more wonderful. Here he is with a school buddy working on his latest project. He is learning all sorts of things, and this week reported to me that Pluto is no longer a planet, but a "dwarf planet." When I asked what that meant, he told me that "you used to be able to drive there, but now it is made of gas, so you can't." Hmmm. I wonder why Wikipedia is missing this important detail.


We enjoyed a visit from Aunt Amy and Grandma Inez this past week. The kids favorite activity was fondue dinner at the Melting Pot. Really, what could be better than dipping marshmallows and cheesecake into hot pots of chocolate? We also started a 1,000 piece puzzle that kept us all incredibly focused, however, there is a good chance the puzzles completion may require another visit.

Clay's next MRI is tomorrow. We will give an update after our consultation next Wednesday. Please keep Clay in your prayers tonight.

Jan 15

Two doses in and so far so good. I took Clay on Wednesday to the clinic so Dr. P could see him. He said "Wow, who are you? You look fabulous, and there is so much more of you!" Clay has gone from 39.5 lbs to 48 lbs in about 3 weeks. We continue to taper the steriods, but it is a slow road. Clay was down this week for a few days with the stomach bug, but today when he woke me up at 7:30 he reported that at 3 a.m. he had been downstairs to have a bowl of cereal and a corn muffin. So his appetite is back. His vision seems to be holding steady -- we don't know where it is compared to what was his normal, but he can see colors, can color, and can get around pretty well. We aren't done holding our breath since we saw how quickly his vision deteriorated last month, but we are hopeful. The plan is to have 2 more doses of Avastin, and then do an MRI in the middle of February. If we see stable or shrinkage, then we will remove the PICC line and schedule another port placement. This will put me out of a daily job flushing his line, but it will mean Clay can swim and shower again.

January 4

Clay's vision has improved over the past ten days. Before Christmas he was able to detect only shadows and contrasts while today he is able to discern most images and colors. He is able to recognize letters and numbers on his kindergarten work book. While none of these observations are clinical measurements the improvement is unmistakable. Does Clay have "normal" eyesight or even "normally bad" eyesight? No. He suffered permanent damage after his first trauma and this latest episode has further degraded his capabilities. However, the recent improvement has moved him from "clinically blind" to a state where he can function under his own power. For this gift, we are truly grateful!

To what do we attribute this trend? The steroids have had an impact right from the start, but Clay's Doc feels that most of the improvement is indication of the Avastin/CPT11 doing its job. Dr. Packer, not a very effusive person, wrote to us that this news "made his New Years." Packer feels that in the situations in which Avastin proves effective that it shows efficacy very quickly. Mary and I are being very cautious in this stage; we are guarding against "false positives" and are aware that even when the drugs are working against the disease they make Clay very susceptible to life-threatening brain bleeds as a side-effect. But, as we have outlined in previous posts, there are few options left for Clay--- his disease is non-operable, radiation therapy is a final-ditch effort that would need to be so comprehensive that he would be severely damaged by it, and there is no known chemo or biologic cure. Our goal is to "buy time" in hopes that medical science can out-run the disease.

Finally we do not underestimate the POWER of positive energy and prayer that has been directed at Clay. Mary and I are convinced that the support is not just comforting but impactful. Whether it be the nightly reminder from the McDowell children, the prayer groups of neighbors and teachers, the Pizzano family's gift of water from Lourdes, or the daily half-hour devotions of my Aunt Roni, we know these and many other signs of faith and love are helping. Thank you all!

As far as daily life, Clay continues to succeed in having an upbeat attitude. There have only been a few times during these "dark" hours when his frustrations and fears have overcome him. For instance, after Christmas eve mass our family tradition is for each person to open one gift from under the tree to take a little pressure off the wait till Christmas morning. This year Clay unwrapped his selection and tossed onto the ground sobbing: " I hate this, I can't see my presents." In addition to the vision problems, Clay is also tolerating discomfort of an IV line (temporarily implanted in his left arm), along with side-effects of a massive steroid dose----the most noticeable being his ravenous appetite. He is eating something close to 5,000 calories per day---awakening at 3 am to eat bowls of cereal for what is the first of three breakfasts. He has gained about 20% of his body weight in 10 days. Even so, yesterday Clay returned to kindergarten where the excellent teaching team guided him through a successful first day back.

-- JD