Thanksgiving

 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


jd

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

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. 

Oct 22

Today is our 16th anniversary and JD has taken a 5 a.m. flight to Boston to attend a conference on Pediatric Oncology. I just attended a friend's 40th birthday party which made me reminisce with JD about mine--a long weekend in Bermuda...just a few years ago, but in many ways a lifetime ago. Recently I came across this Native American saying "sorrow shared is halved and joy shared is doubled." That is the essence of marriage, and of good friends. Since I don't have any nice photos of JD and I, here are some happy Nantucket sheep.

We recently enjoyed a trip to Nantucket with the Hubbells -- a repeat for me -- and a treat for us all. The kids loved flying in a 9 seater plan from Boston over to Nantucket, and the weather was perfect. We attended the Cranberry festival which featured sheep shearing and cranberry bog flooding, we walked on beaches -- empty except for the seals-- the men fished one day (bluefish) and caught scallops the next. A wonderful memory to hold us over the winter months ahead.





















Clay has caught a few bugs but otherwise is holding his own. He and I are quite a site each morning taking our naturopath-inspired potions, but they seem to be doing the trick. His next MRI is early in November. Please pray for positive results so he can stay on this protocol which he is tolerating well.

Gone Fishing

Unfortunately the photographer (me) did a lousy job of getting a photo of Clay with his 12" croaker fish, but I love the expression on his face after reeling in the big one. 

Notable news on the home front is that I have left my position at The Washington Post.  The .com division where I have worked for 8 years was "absorbed" into the newspaper, and most of my close colleagues have already departed.  It was a great place to work and I am fortunate to have had the experience, but now I am looking forward to a break.  One less ball in the air to juggle sounds good to me. 

I have started working with a Naturopath doctor, and am eager to have the time to focus on alternative remedies.  The doctor at the clinic this week reminded me that we are at week 25 of a 26 week protocol. That means we have gone to the clinic every week for 25 weeks. 

Clay is feeling well and is enjoying the independence of going to school each day.  He has charmed the teachers and he tells me he likes to just visit the nurse sometimes (and not because he is feeling badly!).  Last weekend was Grace's 8th birthday, and both Grandmas came to celebrate.  One morning at the breakfast table with JD, his mom, and Clay,  Clay quietly says, "Daddy... are you just so happy because your mom is here?! "   He is a special boy, well beyond his 4 years in so many ways. 

Half Full

We managed to fit in two trips this summer; one to Blue Hill, Maine and the other to Lewes, Delaware.  Given the uncertainties in life as well as well as the penalty of non-refundable air travel, we could not have asked for more.  Clay caught his first fish (the only catch of the trip); saw the sunrise and the sunset one beautiful day on the beach,  climbed Blue Hill mountain, flew on an airplane, enjoyed a few weeks of camp with his best buddie, and learned to ride a boogie board.  He stayed out of the hospital and his counts stayed high.  A good summer, which we pray will lead to a good school year.  He started preschool last week, and while Grace switched schools this year and so is not with him, neither of them seem to be too upset about going it alone.  Here are the kids at our favorite wine bar in Lewes...more photos to come.

Stable

Clay had another MRI this week and the news is good -- all stable. This means that we will continue on the current protocol for another 3 months. At the clinic the news is that Kristin is getting married and will be relocating to the West coast. This is a worry for us.  Clay looks forward to doing ridiculous and funny things with Kristin each week, such as shooting balloons into the nurses station and making roosters (and loud noises) with surgical gloves.  Their laughter can be heard far and wide and most can't resist a smile watching the two of them.  Last week she was out during his appointment, and I said "maybe she is visiting her boyfriend." He did not want any part of that and said to me, "What?!? I am her boyfriend!"