Welcome Pearl

As promised, here are some puppy photos of Pearl.

Grace and I picked Pearl up at the airport last week, at United's Cargo terminal.  Grace asked me, "Mom why are we here with all these truck drivers?"  Picture Grace holding the empty pink collar and leash she had selected for Pearl (see photo).

From snowy Colorado to 90 degrees in Arlington, Pearl has adjusted quickly to life in the Derderian household.  The breeder asked me "do you want a male or female?"  I told her I did not care at all, but I wanted the one with the 'mellowest positive energy' (Thank you Cesar of "Dog Whisperer fame for that advice).  We we may actually have gotten what we ordered as she seems to be a fairly reasonable, calm terrier...almost unheard of!  JD seems to be the most smitten, which is fortunate because once again he has the early shift (which includes, of course, Clay). 

Does anyone remember the crazy bird in the movie "Up"? You may walk by and hear that sound emanating from our home as the kids have fallen in love with saying "ACK!" to anything Pearl does that they don't deem acceptable.  Why is it kids know perfectly well how to enforce the rules but rarely to follow them?  On that note, Happy Mother's Day to all. Stop by (with a treat) to say hello to Pearl.

Team Derderian

We had a great group to run the 5K on Sunday -- over 30 runners, and 90 supporters in total for Team Derderian!  10,000 runners in all!  It was a hot sweaty race and wonderful to relax afterwards and have a chance to catch up with everyone in JD's office overlooking Freedom Plaza. Thanks to those who came from near and far -- Rhode Island, Pennsylvania, the Eastern Shore.  Thanks to all our family and friends for making the effort to make this day a success and bring us one step closer to finding a cure for Clay and the many others suffering from brain tumors. 

April 28

Updates are difficult to write these days as we keep waiting for good news that continues to elude us. Clay is continuing to have bad headaches and we are in a wait-and-see mode, trying to avoid shunt surgery which would drain the fluid build up in his ventricles.  Waiting for the new chemo to work (we are 3 weeks in).  Waiting has never been easy for me in the best of times.  But waiting for your child to stop crying from pain is unbearable and is taking its toll on us all.   The other weekend Clay said to me "I wish we were frogs, then our heads would not hurt so much."

We now have over 25 team members running this Sunday, and many more who are on the team as supporters in funding to find a cure for brain tumors.  For those running, we look forward to seeing you at JD's office before the run for a quick hello and packet pick up.  The overwhelming support we have received is a bright spot in our lives, so thank you again. 

Grace and I are going to the airport today to pick up a new family member -- an 11 week old Kerry Blue Terrier.  Her name is going to be Pearl.  Cute puppy photos to come.

April 16

Thank you to all of you who have donated funds or are joining us in the Race for Hope on May 2.  There are over 440 teams signed up so far, and the event has raised over $1 million to date. JD and I are reminded through events like this how lucky we are to have such support among our family and friends.  There is still time to sign up to join us -- online registration runs till April 25th.  

After 1 more visit to the ER and seemingly endless talks with doctors, other parents, and hours of late night reading, we have settled on new a protocol which Clay started yesterday.  The good news is that this type of chemo does not require a 3 hour infusion over an IV drip, so we are now in the "express lane" for weekly appointment that should take about 2 hours instead of the 5 hours we have been committed to for the past year.  The side-effects should be minimal, with low blood counts being the one to follow most closely.  Our biggest concern remains the headaches Clay is still getting and we pray these will soon subside.

Clay started school last week and so far so good. He is a social guy, and is loving the interaction with teachers and his peers.  One person missing from his life these days is a favorite nurse, Kristin.  She is taking a break from the clinic by volunteering her services on the Mercy Ship, currently docked in Togo, Africa.  Every week we hear "Kristin will be back soon...in May."  So Kristin, this picture of Clay is for you -- a recent photo of his creation made at the Art Table.

April 1

So much for Gleevec.  I won't go into all the details, but we ended up in the ER last Friday morning with Clay, after a very long Thursday night with him feeling terrible. A CT scan showed he had an elevated intercranial pressure.  But, after several hours hooked up to an IV, an opthamology exam, and an MRI, things looked much better and the swelling had decreased somewhat.  They admitted us for observation overnight to the PICU (Pediatric Intensive Care Unit).  Unfortunately it was a busy day and the only bed left was in a room with 3 other patients.  For those of you lucky enough not to have first hand experience with the ICU, here is the thing: there is no sleeping in the ICU.  The lights do not get turned off, ever.  They monitor your vitals every few hours. And there are lots of noises -- patients, machines beeping, visitors talking, doctors and nurses doing rounds,  tv's blaring.  Clay said to me every hour or so, "It is morning?"  to which I would say, "no, the lights are just still on. It is 2 a.m (3 a.m., 4 a.m., you get the picture).   We were overjoyed when we were discharged 24 hours later.  And the headaches have subsided this past week and Clay is back to his happy self.  So we are again meeting with our doctors and deciding on new next steps.  But we are home and that is wonderful.

Happy St. Patrick's Day

As I sit here eating my green bagel at lunch, I am hoping for a bit of the luck of the Irish.  The past few weeks have delivered us a one-two punch (if my boxing terminology is correct).  In the midst of our mourning Bronnie, we got a less than positive report from Clay's last MRI.  After several meetings with Clay's doctors to determine our protocol options, we have a decided to modify his chemotherapy with the addition of a third drug, gleevec. It is a relatively new drug that has great success with specific types of Leukemia, but the medical community has also seen some response with low grade brain tumors.  We hope and pray it has a positive impact that will keep us from progressing to an entirely different protocol.   Everyone admits that the current protocols are not targeted to low grade pediatric tumors.  The next round of drugs that are more targeted to these types of tumors will not be ready for clinical trials for at least a few years.  The race for a cure is critical. I am re-posting our link to the 5K on May 2 in DC so you can join our team!
http://www.braintumorcommunity.org/site/TR/Events/RFH-DC?fr_id=1490&pg=teamlist

On the pet front, Clay has a new goldfish in his room, named "Pancake."  Grace, however, is holding out for a puppy.  The search is on! Clay is looking forward to starting school after the Spring break. Actually, both kids are excited -- Grace is determined to walk Clay to his classroom each morning, and escort him upstairs to catch his ride home at noon.  We are keeping our fingers crossed that he will stay strong and healthy enough to go.

Finally, thank you to whomever sent us the dinner from Whole Foods several weeks ago -- no card was enclosed but we thoroughly enjoyed it!  


-- Mary

Join the Race for Hope - DC - 5K on May 2

Please consider sponsoring us, or even better -- running with us --  in the Race for Hope to find a cure for brain tumors.  It is on Sunday,  May 2 and begins at Freedom Plaza.   Using the link below, scroll down to the "Teams Registered" and find us under "Team Derderian."  Click "Join Team."  This is a family event and there is a walk for kids at 10 am as well as the run.  The race starts at 9 am -- very reasonable! If you can't be in DC - or are strictly a non-runner -- you can still participate as a "virtual runner."  Click to Join team, and then follow the options to participate as a virtual runner.  Here is the link:

http://www.braintumorcommunity.org/site/TR/Events/RFH-DC?fr_id=1490&pg=teamlist


Proceeds benefit National Brain Tumor Society and Accelerate Brain Cancer Cure.

Thank you in advance to anyone up for joining us in our efforts to fund research for finding a cure.