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.  

Sweet Bronnie

We are terribly sad this week as our companion and friend of the past 11 1/2 years is gone.  After several days of ups and downs in the ICU, Bronnie passed away on Saturday.  Our home is too quiet, the space is too big (particularly the couch), and our hearts are filled with sadness.  She was a constant companion to me, and my comfort in a world turned upside down.  She was JD and my link to the past, to our lives before children and so many responsibilities. She made us laugh, she taught us to love, she was a best friend.

SNOW SNOW and more SNOW

Last Friday the schools closed and the snow began falling.  We baked treats, enjoyed a nice fire, and shoveled lots of snow.  Then our cable went out (phone, tv, internet...so much for the efficiency of having all your services with one provider).  By Tuesday, schools were STILL closed and the second snow began falling. Now we are all going a bit crazy.  Our backs are sore, and looking outside, you would never know we already shoveled 2 feet of snow, as 2 more seems to have fallen.  The stores are out of eggs and milk, we are almost out of firewood, and the wind is blowing snow everywhere.   Clay lost his boot in the snow and no amount of digging could unearth it.  Grace created an "icicle castle" but has now turned her attention to videos (and learning to knit).

Our poor dog Bronnie is in the dog ICU as of last night.  She had a bad reaction to some medication while at the vet -- luckily JD got  her settled at the hospital before we got snowed in.  But her absense is even more noticeable since we are all home, and we are used to her constant companionship.  If we can get out of the house, tomorrow will be Clay's last treatment in this round, then another break till round 5 starts in March.   Hope you are all keeping warm. 

Almost Halfway

Thursday was the 2nd of 4 appointments in 4 out of a total of 8 cycles, which means we are almost at the halfway point in Clay's chemo.  We have 18 appointments left.  The first one in this cycle was a difficult one, as seems to be the pattern, and Clay had a lot of aches and pains. This week they cut out the vencristin, and already we see a big difference in how he is feeling.

If you sent us a gift certificate to the Lebanese Market over the holidays, thank you!  It came with no identifying information.  Since it is Clay and my favorite place to eat lunch, we have enjoyed it thoroughly.  Please identify yourself!

Blogging is very much a one-way street.  When I started writing, it was the easiest way to reach out with news about Clay during a very difficult time.  Now that our lives have settled into a "new normal" I am not sure what to do.  Could you let me know if you would like to continue reading the blog --  by commenting, or by signing in?   I know in the past it was difficult to leave comments, but I think I have fixed that so it should be easier.   

What does all of this have to do with Elmo?  Well Grace and I enjoyed a mother-daughter weekend in NYC recently, visiting our friend and Grace's godmother, Caroline.  We packed a lot of NY experiences into 24 hours.  Did you know that taxis now have tv playing in the back seat?  I had to keep saying "Grace, look OUTSIDE the taxi!"  But we did not expect to see Elmo and Cookie Monster hanging out in Rockefeller Center.

Finally, something to be thinking about as the snow continues to fall in Washington... JD and I are going to be recruiting a team for a 5K "Race for Hope" in May.  Here is the link.


http://www.braintumorcommunity.org/site/PageServer?pagename=RFH_DC_HomePage


Please consider joining our team -- more information to come after the snow has melted and we can find our running shoes.

Housecleaning

We are all enjoying the break from Clay's treatment these past few weeks, and wanted to do a bit of housecleaning -- primarily thanking all of our family and friends who have helped make the past year better than it would have been.

First, a huge thank you to those who have contributed to the PLGA foundation in memory of JD's dad.  Several people have asked for the link to the site.  It is:
www.fightplga.org. 

We also wanted to thank the Thursday supper club families who have helped us out these past 9 months with wonderful meals each week.   We know how much work it is getting a hot dinner on the table for your own family, let alone doing double work to provide another family's meal.  Although I have intercepted a few folks at drop-off, mostly these have been silently left on the porch each week.  Thank you Glenda for organizing this, and thank you to each of the families who have helped us make it through our clinic-Thursdays with a warm meal waiting at home.  I am hoping I've included everyone:  

Tanya Vichnevsky, Klings, Forsythes,  Mathesons, Tombs, Ambrozys, Julia Forsyth, Pettys, Gillicks, Simons, Jacksons, Kellys, Harveys, Mandleurs, Egans, Lilleys, Hagertys. 

Finally, a general thank you for the countless cards, gifts, baked goods, and other kindnesses over the holidays. 
 
-- Mary

2010

Clay had his last treatment in this cycle on Thursday, New Year's Eve. This round was a good one for Clay and this last treatment was no different- he has barely missed a beat since Thursday. Over the break we've enjoyed visiting with friends and family and even a few rounds on the ice rink with both kids.

Grace presented us with a story this morning that she wrote at night. I don't think I could summarize the past year, or the hopes for the future, any better than our 7 year old (my only edits are spelling)...

The Stormy Night, by Grace Derderian.
"Once upon a time there were a boy and a girl and there names were: Grace and Clay. They played with each other and they loved each other very much. One day when they were playing outside they saw a dark cloud. They ran inside and hid under the covers. They were really scared. When they pushed off the covers they heard thunder and they saw lightening. They went back under the covers. After the storm was over they went to a restaurant, it was called Pietanza. Grace ate spaghetti with red sauce and Clay ate pasta with butter and Parmesan cheese. The end."

Happy New Year to everyone.