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!"