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.

YES!!!

We got the good news late on Monday that the tumors are again responding to the medication!  The MRI showed shrinkage in all places where the tumors were progressing when Clay was off medication during the winter.  So big smiles all around. Since Clay is the first child back on treatment after the 2 year trial, the doctors were uncertain what the response would be overall, and particularly where Clay had surgery.  So Clay's doctor also had a big smile on her face.  Thank you to everyone reading this for routing for Clay this past week!

3 Months In

Clay is finishing up his 3rd month on the re-treatment trial.  That means it is time for another MRI, which is scheduled for next Monday.  Please keep Clay in your prayers that the drug is working and his tumors have stabilized.  The lack of an update over the past month has meant good news, as Clay has been feeling well and has fully recovered from the spinal surgery.   It was such a L O N G winter.  We were happy to get away to Delray, Florida in March for Spring break, where we soaked up the much needed sun rays.   Since then, Clay has been keeping busy on weekends with Tae Kwan Do and swimming lessons.  Both are helping rebuild his strength and stability.  He has earned one star and a 1/2 bar so far in Tae Kwan Do.

Someday...

Clay's class had a "poetry reading" event at school yesterday where they each read a poem they had written. At the end, they each read a bit of their "Someday..." poem.  Here is Clay's:

Talking to NIH

As you may recall, J.D. and Clay spent a day on Capitol Hill last year meeting with several Senators and Congressmen about the low level of funding from NIH that goes towards Pediatric Low Grade Gliomas.  Just last week, Congressman Chuck Fleischmann (R-TN) took their meeting to heart, and questioned NIH Director Francis Collins on the status of research into PLGA brain cancer.  You can watch the video here (it is short, don't worry!).  This is a great step and we are thankful to Congressman Fleischmann for using his precious minutes of air time to get the issue in front of the NIH Director. We are working with the PLGA Association to get more families and supporters to follow up with letters and calls to NIH supporting this initiative.

http://www.tubechop.com/watch/5313257 


Clay is doing well back on the medication, and we pray his next MRI in April will show stability in the disease. 

While we like snow as much as the next guy, we are getting antsy for Spring, like everyone on the East coast.  With Clay's recovery from surgery and then piles of snow days, we are burning through lots of firewood. Daylight savings time begins on Sunday, which is a step in the right direction.

Re-Treatment

Thursday was a very long day as we knew it would be. It started at 8 am at the clinic with signing the consent forms to begin the re-treatment trial and doing routine exams. Next, cardiology for an EKG and ECHO exam. Next, the routine eye exam (really?) to make sure the drugs had not damaged Clay's retina. Next, the MRI, which was running a routine 1- hour late.  All went fine to this point, except for the fact that Clay had nothing to eat for 24 hours and he seemed to have picked up a stomach bug along the way.  Post-MRI and anesthesia we wheeled a very "fuzzy" Clay up back to the clinic, to have the doctor come out with a sheet of paper, telling us he could not get the drugs because his sodium and calcium levels were too low.   So we ended our 10 hour day empty-handed and very angry.  That night we pumped Clay full of calcium pills and TUMS tablets, as well as gatorade and salty canned chicken soup (have you checked the sodium levels on that?!).  Friday, I took him to the clinic again for another blood draw.  Four hours later they called to say his levels were still low, but sufficient enough to qualify for the trial and get the drugs!!!  JD picked them up after work, and today Clay started re-treatment.  Big sigh.  No Valentine -- no diamond earrings -- could be better than the 56 small white pills sitting on my dresser. 

Post-Surgery Checkup

Clay and I went to Hopkins yesterday and got the all clear from his surgeon-- "no restrictions" -- not even on unloading the dishwasher, much to Clay's dismay.  It was wonderful to have such a happy appointment, and to see his surgeon so pleased with Clay's progress and the outcome of the surgery.  I have been thinking a lot lately about the job of a neurosurgeon.  Are there any other jobs where one person so directly impacts the life of another?   I am reminded of the joke,

"What is the difference between God and a surgeon?"
 "God doesn't think He is a surgeon." 

But really, I get that stereotype, but it is true -- God is certainly in the surgeon's hands and in his brain, and in his choice to do this work.  We were fortunate to have the best.  He told us that he was able to remove about 80% of the tumors he took out, which should give Clay some space in his spinal column and put him out of immediate risk...as long as we keep the tumors from growing back. 

Which leads us to tomorrow, which will be a very long day at Children's.  Clay has 4 tests (ophthalmology, EKG/ECHO, Clinic) and a brain/spine MRI to get through, in order to get back on the re-treatment of the clinical trial drug he took for the past two years.   We feel very cornered where we have to do whatever they ask of us in order to be considered for re-treatment.  The protocols are not written with concern for the children and what they experience, but for the researchers and the data outcomes.  If a person is the sum of all they experience, it is my quest to try to provide experiences that will help Clay feel like he is a 9 year old.  Some days, some months, that is almost impossible.  So we focus on the positive, and our friends and family help. 

Just this week, Clay's Boy Scout den came over to present him with the news that while he was out, one of his fellow scouts, Griffin Walker, built him a car.  They raced the car during the Pinewood Derby, and it came in 2nd Place!  They did a great highlights video and the kids can be heard chanting "CLAY, CLAY, CLAY!" during the race, while Clay's white car with all their signatures  on it crossed the finish line.  Clay loved the visit, which ended with him showing everyone his large scars on his back and the boys, mostly open-mouthed, saying, "Cool."

Home Sweet Home

Clay and I were handed our walking papers from Hopkins on Sunday.  The neurosurgery team came into our room about 8 a.m. and asked Clay how he was feeling.  Clay popped up from sleeping and replied, "I am feeling good, because today we are busting out of here." Which they gladly agreed to.  He got one last Italian ice from the nurse for the ride home, and we wheeled out of there around 2 p.m.

I was very impressed by the care Clay received at Hopkins.  They were attentive, caring, professional and organized.  If any of you have spent time in the hospital, you know what I am saying and how rare it is to have all of those things together.  It reminds me of the joke, what do you want, fast or good?  Well, it seems like we got both.

Clay is moving around better each day, although he is still on heavy-duty pain medicine around the clock.  So we will have a quiet week at home, praying he has no complications as the wounds heal.  Today we spent some time going through a box of cards from his classmates and teachers, many which included fun jokes from his friends.  It is good to be home, although we have to get used to not being able to order every meal by calling the in-house patient food line, 2-FOOD.   Ahh, it wasn't that good anyway.

Day Two

Hospital time passes like dog years. Although we have only been here two days, it seems like far longer.  Clay's recovery has continued to progress nicely.  Yesterday we moved out of the PICU into a regular pediatric room.  Much better sleeping with the lights out (mostly), fewer machines beeping, and check-ins every four hours instead of hourly.  Today started at 6:45 a.m. with his surgeon doing rounds.  The day quickly picked up with subsequent visits from: physical therapy (PT), neurology, oncology, radiology, pain management, and the librarian (who brought Clay two books in braille). Oh, one more: A volunteer with child life, who came in to play music with Clay while I took a quick shower (clearly this was his favorite, see:). 

The best news of the day, however, came with PT.  Clay stood up, walked around the room, and sat in a chair for 45 minutes, with not too much pain.  He was so proud of himself, and so happy to be back upright after the forced 24 hours flat. 

After this success they pulled him off the morphine drip and moved his meds to oral, so he also got to lose two of the IV's in his hands, further increasing his joy.  We had a nice visit with my Mom, but then we missed dinner since Clay got called for his post-op MRI.   This was no fun as we made him do it without sedation, and it was uncomfortable lying flat again in the scanner for close to an hour  But, our pal Laura had provided Clay with a CD of his top 12 songs, and so he powered through the scan listening to this.  (At one point he yelled from the scanner to the technicians "My mix tape is over, please start it again!") 

Tomorrow should be a quieter day since it is Saturday.  There is some talk of us going home in the next few days, which would be just fine with us.  Thanks for all your kind notes, prayers, and support. 

Surgery Over!

We are settling in the PICU room with Clay for the night after surgery that went as well as we could have hoped for.  The three of us arrived at Hopkins at 7 a.m.  (Four, if you are counting Clay's faithful and ever-present Mousey). There was a small "change order" thrown our way when our surgeon, Dr. Jallo,  said he and the team had decided it would be best to remove TWO spinal tumors that were growing rather than the one we had discussed ("We are running a two for one snow-day special today...")  In the stress of it all that didn't really register until the surgery was underway, and although the reasoning to get as much tumor as possible during one surgery certainly made sense, it was difficult news to absorb. 

The surgery was planned for 4 to 4.5 hours, but the doctor emerged into the waiting room in just 2.5 hours, with a smile and news that all was well.  He was able to remove most of the tumors with no obvious stress to Clay's spinal cord.  By the time JD & I arrived in the PICU, Clay was awake, and alternately flirting and bossing his nurses around.  Thank God.  He is now on a morphine drip (Why is there no two for one special on THAT?), and we are only 4 hours into 24 hours of mandatory laying flat on his back.   We are not out of the weeds, and the next few days will be critical to make sure Clay can sit up, walk, use the bathroom, and manage the pain.   It is going to be a long night, but a happy one that a successful surgery is behind us and the healing can begin. We hope to move out of ICU in a day or two, to a "regular" room.  Thank you for so many good wishes and prayers sent our way.  We will give another update tomorrow. 

Pre-Surgery ER Update

Clay had a rough weekend.  On Saturday evening he complained of general pain in his right leg.    On Sunday morning he awoke with strong, intermittent pain in his right arm and chest.  He also has had a poor appetite with random vomiting spells. His Docs recommended getting him to the emergency room at Hopkins for immediate evaluation.    The tests did not show any new bad news so the conclusion was that Clay is experiencing neuropathic pain as a result of the increasing pressure on his spinal cord.  The plan was to have Clay on a regime of steroids to hopefully give some quick reduction in swelling while he awaits his surgery on Wednesday morning.  (it is almost impossible to coordinate Clay’s complex care on an emergency basis during a long, holiday weekend. ) JD and Clay did an overnight at Hopkins,  finally being released Monday evening at 6:30 pm.   While Clay still feels rather crappy we have learned that even a couple less nights in the hospital and instead in his own room is of great therapeutic value.

JD here----As many of you know Clay had experienced a period of blessed stability in large part due to the experimental therapy he was receiving as part of a FDA Phase 1 Clinical Trial.   The trial had reached its legal limit on November 1 and all 7 kids on the trial were required to disengage from the therapy for a minimum of three months prior to "reapplying" for further use.   While this arrangement was established after a very complex decision-making process the simplest explanation is that the possible long-term side effects are a complete unknown which makes both the researchers and manufacturer very reluctant to push the boundaries any further. 

Clay had his first MRI scan since the conclusion of the protocol on January 2 and to our dismay the results showed renewed  growth across the entire disease "footprint" in the brain and spine.   Of particular concern is a specific lesion on his lower spine that the Docs now conclude was showing modest growth even while Clay was on the therapy but which has grown at a rapid rate since the conclusion of the trial.   Beyond the fact that this spot is exhibiting a confounding and worrying unique growth behavior the concern is that the lesion is in a position and of a size to be a serious threat to Clay's nerve functioning.  Due to the pressure on this spot of his spinal cord they believe he is in danger of losing sensory and motor ability in the lower half of his body.  It is the Docs' view that Clay cannot risk waiting for a chemo therapy to act (or not) on this spot and so have recommended immediate surgery to "de-bulk" this one tumor in hopes that it will relieve the pressure on his spinal cord and buy some time for the next chemo therapy agent to exert some control over the growth of his entire disease state. 

Of course this procedure has much inherent risk---opening up the spinal column and operating on the spinal cord is no run-of-the-mill procedure but Mary and I have interviewed neuro-surgeons and have decide to have Dr. Jallo at Johns Hopkins perform the procedure which is now scheduled for the morning of Wednesday,  January 21st.  Jallo is a nationally acclaimed surgeon who specializes in spinal cord operations.   We feel very fortunate to have the "best of the best" just an hour from our home and are hopeful for a good outcome under his care.   The projected recovery period includes 3-5 days in the hospital and roughly two weeks of recuperation before returning to school.  We will keep this page updated as we have more information.   Once more into the breach!

 Clay's spirits are high though he admits to being a bit "nervous about having to be on 'his' back" for so long.    His school mates and teachers gave him a cheerful send-off yesterday with a pizza party and arms full of stuffed animals,  get-well notes (in braille) and books on tape.   When we first shared with Clay the news of the need for this operation and its intent he responded by saying:  "Dad, wouldn't it be great if when  they took out this tumor it was attached to the other ones and they all came out!"  Yes Clay, that would be great.