Monday, April 23, 2012

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  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. 

Friday, April 13, 2012


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.

Tuesday, April 10, 2012

Benefit Concert

The details for May 12 are set and the information and ticketing is here: 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.