Great News

We met with Clay's doctor on Thursday. Since the tumor is stable and we are approaching the one-year mark of this protocol, we have decided to take Clay off chemotherapy for now. There is no predicting what is ahead...about 50% of children have no tumor growth in the first two years off chemo. So we will watch and pray. The next step is another MRI in three months. If that shows continued stability, then the port that is in his chest will be removed. Since we already skipped a week for our vacation, and the second week for the MRI, this is actually Clay's third week with no clinic visit, no anti-nausea medicine, no chemotherapy! This Friday, instead of going to the clinic, Clay was able to go to school. We went to the park, we walked the dog, we tried some corn beef and cabbage for St. Patrick's Day. The sun was shining in DC and the temperature reached 80 degrees. A great Friday.

Good News

Clay's doctor called yesterday to say that the MRI showed everything is stable, which is the report we were hoping for. We will meet with him next week to discuss the MRI in detail and discuss next steps. Thanks to everyone for keeping Clay surrounded by your positive thoughts and prayers.

Hawks "Clay"

We just returned from 5 wonderful days in the Florida Keys at Hawks Cay (renamed during our trip to Hawks Clay to better suit us. ) It was just what we needed -- warm, sunny skies; several swimming pools (one with a pirate ship in the middle); great food; and endless activities including a kid's camp. Clay's favorite activity was jet-skiing. He and JD rode one jet ski, Grace and I rode another, and the guide rode the third. Grace kept asking me if we were lost in the ocean, as all the boys were soon out of site. The photo on the left is a shot of Clay just after the ride. It was hard to get on that plane heading north yesterday, and Grace kept asking "why don't we just live here?" Good question.


Please keep Clay in your prayers tonight as he has an MRI in the morning.

Miscellany

Clay is finally back in school a few days a week, now in the "lunch bunch" session. This afternoon session is only for 5 year olds, so there are far fewer children in this group. Clay seems to like this better -- less noise and confusion, more attention, more opportunities to make friends. His Montessori class has 26 kids, and for the winter that is just too many chances to catch a cold. He is slowly putting on weight and his energy is back. He (and JD) are enjoying a Karate class each Saturday. We are keeping our fingers crossed that February passes without any more drama. His next MRI is March 10. This is a big one for us---if things are stable we have a real chance to discuss taking Clay off chemo. Please pray for positive news from this MRI.

It hit me last night just how much time Clay has spent with JD and me this winter, after hearing his commentary while trying to open a Chinese fortune cookie. He was sitting at the kitchen table struggling with the cellophane, while I was nearby in the kitchen, and I hear: "Come on!! Easy to open?....who are they kidding?!" I don't think this is how most 5 year olds talk, is it?

Kristin, I am sorry to report that Clay has moved on...
On our way into the clinic last week he told me "I still love Kristin, but she is married now, so I have a new girlfriend." This new love is far younger (aren't they always?), and he is working on a Valentine necklace for her. But we sure miss you each week Kristin! Here is a birthday photo of our little heartbreaker, enjoying himself at the Zoo (thank you Lawrence for the photos!).


Mary

A New Year

We made it through 2010 and for that we are thankful. We may have limped over the finish line, but we did it together, with family and friends all around. The consistent theme handwritten on the Christmas cards we received was "2011 has got to be better." Indeed!

Today Clay and I visited the Lego exhibit at the National Building Museum. Just outside the building we saw Aslan's likeness (the lion from the Narnia series) in all his Christmas glory. Clay gave him a big roar! And I noticed the quote below the lion:

"The wicked flee when no man pursueth but the rightous are bold as a lion."

There is magic everywhere when you look for it. Clay is our lion. We have struggled this year, but we have also pulled together and we have learned to rely on each other. And on others. We have learned gratitude, and we have learned to enjoy simple pleasures. We have learned what a gift each good day is. We have grown in many ways we would not have ever asked for. But now we are lions! Roar!

Five

Clay turned 5 last week, and we celebrated with a party at the Zoo. The rain held off and the Pandas were both outside playing. Hindsight being what it is, we were very lucky that we celebrated early. On Wednesday Clay turned feverish and JD (again) headed with him to the ER.  Two more days spent at the clinic on Thursday and Friday and Clay is again home and recuperating.  The diagnosis this time was pneumonia and RSV. Seems his weakened state from the shunt surgery left him vulnerable to all the colds going around.  This came after his first chemo visit in weeks where both of his doctors said he looked the best they had seen him in a long time, and they confirmed the stable status of the tumor.  With Santa expected later this week and family and friends around, we are hopeful for a good few weeks keeping warm in front of the fireplace.

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.