Tuesday, November 30, 2010

Blue Sky in a Rainy Day

Today was Clay's rescheduled MRI.  The news is good--no growth in the tumor, and appropriately sized ventricles, which indicates the shunt is working properly.  Clay's surgeon met us in the recovery room and said that she has not had a patient have such a hard time with recovery from a shunt implant as Clay, but all indications are that he is headed in the right direction. He is far too thin right now, but after he woke up from the MRI he started eating and barely stopped until bedtime.   The MRI wing at Children's has been renovated and the ceilings in the recovery room now have stained glass inserts of a blue sky with puffy clouds and cherry blossom trees in bloom.  A nice scene for Clay to wake up to, and for JD and me the first blue sky we have seen in some time. 

Thursday, November 25, 2010


 Thanksgiving morning

Clay:  "Do you know how much I love you?  As big as this country!"

For a brave little boy's love as big as this country we are truly thankful.  We are also thankful for the family and friends who have dried our tears, made us laugh, helped shoulder our burdens and shared their hearts.   God bless you all


Friday, November 19, 2010

Clay is home and starting to feel better

(JD here for a rare guest posting.)   As Mary explained Clay's brain fluid passageways became so obstructed that his cranial pressure increased to a dangerous level causing him excruciating pain and reflexive vomiting and coughing.   The pain was so strong that tylenol with codine did not make him comfortable.   Unfortunately there was no option other than to have a shunt surgically implanted in his brain to relieve the pressure and to allow his brain fluid to flow more easily.   The shunt is a small plastic tube with a few valves that is inserted in the ventricles of his brain and then extended down his neck to his chest and then terminated in his stomach.   The surgery was performed on Friday mid-day and was deemed a  "success.  No complications arose and a ct scan after the surgery showed the brain ventricles to be responding as expected.

  But Clay's recovery has not been "textbook" as his body's readjustment to "normal" cranial pressure has been slow and torturous.  His doctors now believe that Clay had been tolerating extreme cranial pressure for some time and only until last week when the pain became extreme did the problem truly manifest.   It brings new meaning to the phrase "grin and bear it"---Clay has been in great discomfort for a good while but all you ever got from him was a grin and a "I'm fine" response.   Clay's recovery process has been akin to a diver with the bends----the body is dealing with a sudden change in pressure and it causes the same symptoms that brought him to the hospital in the first place. 

We brought Clay home from Childrens Hospital on Tuesday afternoon.   Or as Clay told his surgeon on Tuesday morning:  "we are busting out of this joint today!"  At that point his symptoms had not really improved-----he was still experiencing severe pain and forceful vomiting but Mary and I felt strongly that the hospital was no longer the right place for Clay.  The old joke about them waking you up every two hours to see if you are asleep is no joke.

On Thursday he  turned a corner----he is eating and drinking without difficulty and  the pain is only relegated to when he is upright.  He is still largely confined to bed or couch but his (and our) energy and spirits are much higher.  His doctors expect this trend to continue and for him to feel better than before once his body readjusts.

What we don't know is "why now?"  Of course this problem is tumor related but we don't know yet if it is because the tumor "moved", grew larger or if  his latest therapy is having some success in killing part of the tumor and the dead cells are causing a blockage.   

Clay seems to have climbed out of this ditch but his path is still long and arduous.   Thank you all for hanging in there with us and a special thanks to Rainette, Maria, Sharon and the Ambrozy's for helping our family get through this hellish two weeks.

Sunday, November 14, 2010


Last weekend Clay started having bad headaches accompanied by vomiting. After two long days in the clinic getting IV fluids to stop dehydration and rule out any infection, we took him for a CT-scan.  This showed further enlargement of his ventricles.  JD took Clay to Children's hospital Friday for surgery to install a shunt. The surgery went well but the recovery is slow as the adjustment to normal pressure is causing nausea and pain. Please add Clay to your prayers tonight.