It has been 2  years since the last post, but we figured maybe some friends and family still have this marked for updates.  If so, we wanted to reach out again.  Clay has been in Childrens’ National Hospital since Thursday morning for an array of issues which combine to form a “failure to thrive”.   He is experiencing nausea, vertigo, neuropathy and a palsy shake.  He has lost 10 pounds off his small frame due to a reluctance to eat because of his gastrointestinal distress.  Clay’s energy and cognitive focus have declined to the point he has been unable to complete a full school day.   And most alarming to us is Clay’s loss of his joie de vivre.  He is anxious and clinically depressed.

The good news----this latest malaise is not attributed to NEW growth of the cancer.    The not-so-good news----the Docs have yet to be able to pinpoint the reason for Clay’s recent issues.    We must keep in mind  his brain and spine have been infiltrated by cancerous tumors which would be enough to screw up a body.   But why the pronounced symptoms at this juncture?  One suspicion is  this is a sign of accumulated impact from the experimental chemo which for the past 5 years has kept Clay’s cancer from spreading.    Is Clay’s body being undermined by the very chemo drug which has kept him alive?   Before fully contemplating the need to look for an alternative therapy (there are no readily available good options) the Docs are performing every possible diagnostic in hopes of identifying a factor/factors that may be catalyzing his condition.  His latest MRI reveals a "bleed" in his tumor located near his cerebellum which could contribute to some of these symptom.  This “establishing baseline” should be complete on Tuesday and the entire team of Docs will gathering  to discuss the data and provide some next steps for getting Clay’s quality of life to improve.   We hope and pray for some relief for Clay; right now he is in a physical and mental crater.

All Good

Clay's last MRI, done last Saturday, was stable.  Great news.   It was a wonderful holiday, surrounded by family and friends.  Clay has been busy, even though his riding lessons are done until Spring. He participated in his school's winter concert last week, playing the clarinet; and earned his gold belt in his Tae Kwan Do classes this weekend.  Here he is proudly wearing his new belt. 

Monster Mash Success!

Our 1st annual Monster Mash was a real spooktacular time! Cardinal Wuerl gave the blessing, Dr. Raabe from Johns Hopkins spoke about low grade gliomas and the challenges in treating them, Congresswoman Eschoo spoke and Congressman Crowley auctioned of the top pumpkins. Clay recited his "Someday" poem, and Fox News picked up the story, which ran on the 10:00 news that night. Clay was thrilled when kids at school the next day said he was a "movie star."  We raised close to $300,000 which will fund 3 research projects next year.  If you want to see photos and read more about the event or see the news clipping, it is all up on www.imagineananswer.com
Thanks to so many people who donated money or services! We are so touched by such widespread support.

Clay's last MRI was stable and he is feeling good.  He is learning the clarinet at school, and continues with riding and tae kwan do.  I'm changing his profile picture to one taken at the stable with his instructor, Brooke.  I love that photo!  We are settling in with our new puppy, Hazel, who is now 12 weeks old.  She loves soccer.

October 23, 2015

 

JD and I are working towards starting our own foundation to raise money for research for pediatric brain cancer.  We are calling it "Imagine An Answer."  Our first event is next week at Eastern Market on October 27th,  "Monster Mash Pumpkin Bash." Over 20 Members of Congress are carving pumpkins for the event; we will have a silent auction and then auction off the pumpkins as part of the program.  So many people have worked to make this event a success -- Lebanese Taverna is catering, H Street Country Club is doing a special cocktail, we have a DJ, Tracy's Kids is doing artwork from the pediatric art room at the children's clinics they serve, we have Annin flag decorations, a full program and new website, to name a few contributors.  All of the information is at www.imagineananswer.com if you would like more information or are able to attend.  JD has been working around the clock to make this happen.  We hope to make this an annual event and all of the funding will go to research to make better, less damaging treatment available for kids like Clay.  

I have been putting together a slide show to show during the event.  It includes many photos and short stories of kids with brain cancer.  Each child's story is testament to how limited the current choices are for effective treatment, and how devastating the side effects of these treatments are. What Clay has been through is not unlike many of the others children.  We have to do better at finding answers of how to tackle this devastating disease.  We have to give these kids a better chance at a childhood that is not filled with suffering.

www.imagineananswer.com

 
On the non-medical front, we have a new member of the family.  Hazel   is a 9 week old Australian Labradoodle.  (Australia's first seeing eye dog breed for allergy sufferers!) Clay and I went to get her last Monday in Windsor, Pa. Here is a shot of Clay on the ride home.

She is a real sweetheart so far and is doing well with her training.  It is nice to have a dog in the house again.

Clay is loving horse riding, and is starting to help with all phases of the ride, including getting the horse ready for the ride, and putting him back in the stall afterwards.    Here he is on a recent lesson.  Each week they do a new drill.  Bareback was his least favorite.  This week was learning to direct the horse over planks.  The founder of Sprout is amazing, and has a real knack for knowing how to adapt the lessons for Clay.  They are having a fundraising 5K this weekend on Sunday if anyone is in the mood for a jog in the country! You can register at the race.
www.sproutcenter.org

Settling into a routine

No news is good news on the medical front and Clay continues to do well on the current protocol.  We have been busy getting back into a school routine, after a long and wonderful summer.  Clay has his same wonderful braille teacher, his same wonderful O&M teacher, and two new wonderful classroom teachers, so I won't complain that it took three years to reach this point...

On the recreation front, Clay has started horse riding lessons horses at Sprout.  This is a therapeutic horseriding center for kids with various disabilities.  The owner / founder is a former school teacher, who was left money by her uncle (who was paralyzed by polio) to do something to empower youths with disabilities.  So, her family bought 17 acres in Aldie, Va., and here we are.   Clay has already trotted, gone outside on trail rides, and is learning to direct his horse "Pippin" to go where he needs to go.  I imagine the movement must feel wonderful to Clay as he travels on Pippin through space no longer easily accessible to him. 

 

Second class, "Look mom, no hands!"   I love watching him concentrate while he is riding Pippin, but of course, being Clay, he still manages to get in lots of talking and laughing during his lessons.

Fall is a busy fundraising season and we have various races and activities going on: A 5K race in Washington DC on October 3 to support the brain tumor trouncer team at Children's Hospital; a 5K race on October 25 in Aldie to support Sprout, and a Tae Kwan Do kick-a-thon on October 3 to support the Adaptive Tae Kwan Do class that Clay does on Saturday's.  Let me know if you would like to participate in any of these events and I can give you more information.  

And the most meaningful family event this month, our wonderful Grace turns 13 on September 25th. Hold onto your reigns Clay, a teenager is in the house!

All Good

We drove 11 hours on Tuesday from Hyannis, MA to get back into town for Clay's MRI. Yesterday we got the news -- shrinkage all around! Clay has been on the re-treatment medicine now for 6 months, and we got the green light for another 3 months.  The doctors are all very pleased with the way his disease is responding to being back on the medicine, and the best news is that this time there is no forced "end date" for us to stop.  In the meantime, some other MEK inhibitors are making their way down the approval pipeline, and we pray that these will be effective also in the future.

This news capped off a great month in every way.  NJ, ME, MA, lots of action and lots of visiting, 2,100 miles clocked on the car odometer.  Clay enjoyed fishing, learning to throw on a pottery wheel, art class, kayaking, swimming almost daily, and of course consuming lots of lobster and ice cream.  We were lucky with great weather the entire month.  Since we had stayed in the same house in MA last summer, it was all more familiar and easier for Clay this time.  Now we are home for a few weeks, and braille "summer school" is underway...

July 1

Several people have e-mailed and called, hoping things are ok since I have not posted a blog.  Things are all good with Clay...he had his clinic appointment yesterday and we got the green light for another month.  Strep hit our house in May/June, and it took Clay a few rounds of antibiotics to clear it.  We think all the time spent in hospitals has made him have a pretty high tolerance for bacteria so strep didn't respond like it should have.  But this appointment brought good news that he has put some of the weight he lost back on, and things are looking great.  His next MRI will be the end of July.

Clay has been busy the past week with BELL camp at a church nearby.  This is a NFB camp (the National Federation of the Blind) and is almost exclusively run by people who are also blind or visually impaired.  There are 5 children, and about 10 volunteers/teachers.  There is one young woman volunteering who Clay finds particularly hilarious, so he is enjoying himself.  They play adapted games, do braille lessons (in a fun way...), make themselves lunch, do crafts, and field trips.  After spending the year being the only cat in a classroom full of rocking chairs, Clay is enjoying being with other visually impaired folks who have the same challenges that he does.  

On Saturday the kids and I head out for most of the month -- a stop in NJ to visit with family, a stop in Maine to visit with family, and then a few weeks in Massachusetts ourselves and some time with friends.  Bliss!  Happy July to you all.