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.