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.

Three Dog Nights

I have just finished reading "A 3 Dog Life" by Abigal Thomas. The title refers to the Australian Aboriginies practice of sleeping with their dogs for warmth on cold nights, the coldest being a "3 dog night." It certainly has been that kind of night lately with our record breaking snowfall last Saturday. This memoir details the years following a car accident the authors husband was in one night in New York city while walking the dog (that she made him get). Passages like this one in particular grabbed me:

'There is no irony here, no room for guilt or second-guessing. That would be a diversion, and an indulgence. These are hard facts to be faced head-on. We are in this together, my husband and I, we have been thrown into this unfamiliar country with different weather, different rules. Everything I think and do matters now, in a way it never did before. I seem to be leaving in the road behind me all sorts of unnecessary baggage, stuff too heavy to carry. Old fears are evaporating, the claustrophobia that crippled me for years is gone, vanished. What for years had terrified me now seem ridiculously easy. I haven’t got time for this, I think."

In addition, the woman is a knitter, which I am also relating to, having spent a ridiculous number of late-night hours trying to finish up the kid's Christmas gifts.

Clay is doing great with good blood counts and few side effects. Tomorrow is round 3; 4 is on New Year's eve. We will spend Christmas week at home with both Grandmothers. All the best to you and yours this Christmas.

Mary

Edward Derderian

JD’s father, Edward Derderian, died on November 20th at the age of 87. Ed survived the Great Depression, helped win WW II as a decorated airman, and served most of his career with PPG Industries. While he had a strong work ethic Ed had a gentle personality. He was the guy that you called when you were in trouble and needed help. It was a combination of him being handy (he could fix almost anything) and non-judgemental that made him the favorite for when you were in a tough spot. He was devoted to his wife of 52 years and his family and loyal to his lifetime friends. He passed on his wisdom by “doing” not “saying" and was a man who loved by giving and sacrificing. He was a good man and will be missed.

One of our friends suggested that the timing of Ed’s passing might be so that he could be in a better position of influence to watch over Clay. We find a lot of comfort in that concept and as a result decided to ask that in lieu of flowers or gifts that folks make a donation in Ed’s name to the PLGA Foundation which is dedicated to supporting research of childhood brain tumors. The Foundation has already received a number of donations in “Grandpa” Ed’s name. The above photo shows him enjoying Easter several years ago with his 5 grandchildren and wife.

Clay is 4

We've had a few busy weeks since Clay's last treatment: a visit from my uncle in California, Thanksgiving, Clay's birthday (celebrated early), and a visit from my brother and his family from Maine. The kids had a blast getting reacquainted and everyone enjoyed the surprise early snow this past Saturday. The sleeping-in for Clay was going great (7 a.m. almost every day!) until Clay's Grandma R gave him a ride-on digger for his birthday...now he wakes up early to play with it. Nonetheless, we are very grateful to Aunt Tanya for putting it together while Jim, Grace and I took in the train exhibit at the botanical garden.

The MRI done over the break gave neutral news-no changes in the tumor size or spread. The doctors say this is to be expected over the course of treatment. While the results were disappointing for us, we are trying to stay focused on the fact that Clay is happy and feeling well. Round 3 starts this Thursday. -- Mary

Nov 17

Nothing much to report as we near the 4th round in this cycle. The last two weeks have been good ones for Clay with little side effects and overall good blood counts. We are looking forward to a two week break after this week's treatment; however, this break involves an MRI. Early morning update: we are now trying a sticker chart to stop the 5 a.m. wake ups which are getting very old (particularly for JD who is Clay's morning companion). We bought a birdhouse clock where bird singing is the alarm -- but apparently Clay wakes up and stares at the birdhouse for as long as he can, then comes into our room and says "the bird is NOT singing!" Any ideas for keeping a child in their room at least until 6?!