Tuesday, December 22, 2009

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.


Tuesday, December 8, 2009

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

Tuesday, November 17, 2009

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?!

Thursday, November 5, 2009

Nov 5

We just completed the second of four appointments in this cycle. Not much to report - Clay's blood counts are fine but the first week was a rough start. It seems like after a break the chemo hits him harder. That and the 5 a.m. wakeups (changing the clocks did us no favors) made for a tough week.

This Sunday I am joining some of Clay's doctors and nurses in a local 5K to benefit pediatric brain cancer. If anyone feels like a jog on Sunday, check this one out: http://www.thecurestartsnow.org/page.php?id=33 . Clay's doctor and many others are shaving their heads after the race at the Westover shopping center. That will be something to see!

As always, thank you to the Thursday dinner club for the wonderful meals (and wine) in recent weeks. It is a real break to come home from the clinic and not worry about what we will be eating that night.

Tuesday, October 27, 2009

Hope and Glory

We are back from our anniversary weekend and all went well. Irvington is a sleepy little town largely being improved by one family that decided to invest in its future, and it is our third visit (the second for both Grace and the dog). Upon arrival the owner said "I am sorry for the reason for your visit, but glad to have you back." I know people love to make jokes about marriage, but that was a bit rough, so I said, "well some people think an anniversary is a reason to celebrate..." She had confused our reservation with another guest who was in town for a funeral. After that, it was all uphill. They got us a babysitter for Saturday night so JD and I could enjoy dinner out. About 10 p.m., we walked back to our cottage expecting silence and darkness. The lights were on, the kids laughing, jumping. The babysitter was sitting in a chair looking tired and said "Honestly, I lost control about 8:30." Later when we asked the kids their favorite part of the weekend Grace said, "the babysitter, she let us watch TV." Clay said, "Eating!"

It has been a good break for Clay. We wrestled the H1N1 shot for all of us from the pediatricians, and are working on getting the seasonal flu shots as well. Round two starts Thursday.
Happy Halloween!

Sunday, October 11, 2009

1 cycle complete

When we go too long without posting an update, friends and family start to call and fear the worst. So I will try to do more short posts with quick updates. We are finished with the first cycle (one of eight). Ahead lies two weeks off chemo and our anniversary which we have decided to celebrate as a family, even the dog (we will discuss the wisdom of this decision in a future post). The past two weeks have been good ones, enjoying the fall weather, talking about halloween costumes and upcoming holidays. Typical ordinary days that we no longer take for granted.

Clay has tolerated the past several weeks of chemo well, his blood counts are in the safe range, and he continues to amaze us with his spirit. Today JD found him down in the family room at 6:15 a.m. - alone - wearing fireman boots and ski gloves. "What are you doing down here buddy?" "I am a fireman putting out fires!" (you had to ask?)


Tuesday, September 29, 2009

Hello Kitty!

In light of Grace's recent 7th birthday party and this beautiful fall day I am going to post some photos from the past month or so that make me smile. A nice break from medical updates.

Friday, September 25, 2009

Back on track

A quick update: after three extra clinic days, extra antibiotics, and extra shots to boost his white blood counts we are back on track. Clay's blood levels rebounded to normal by Monday, so JD took him for chemo on Wednesday. They reduced his dosage and he is doing well as of today.

In light of this setback, his doctors have recommended no school this fall. This is going to be a disappointment to both kids, since Grace was looking forward to being the big sister walking her little brother to class, and Clay was excited to have his former preschool teacher (who got Montessori certified over the summer and switched schools) in the classroom. The school administration was wonderful upon hearing the news, and they've promised to hold a spot for him should he be able to start in the spring. The concern is all of the viruses already circulating, and what the doctors feel is going to be a tough winter. For a well child this is inconvenient, for a child undergoing chemo it means more hospital stays for every fever -- clearly not worth the risk. So we will be looking for play dates and small group activities instead, and our wonderful sitters have agreed to add more hours. We've been watching the "Little House on the Prairie" movie -- they make homeschooling look appealing enough, except the lessons always get interrupted by Indians, mountain lions, and fires...

Tuesday, September 15, 2009

Cycle 1

Last week began the "maintenance phase" of chemo, which is 8 cycles, 6 weeks each. Yes, 48 weeks, 32 of which require chemo. The appointment last week was uneventful, but seemed more difficult to face after the break in August. Clay didn't at all seem himself afterwards, complaining of headache and stomach pain. On Sunday he developed a fever, so he and JD went off to the ER. Six hours later, at 11 pm, they came home and ate a scrambled egg dinner. Clay's counts were high enough that they did not need to admit him, and he was given the routine order of antibiotics. Yesterday I took him to the clinic for the standard second dose of antibiotics. The bad news was that his blood counts dropped very low (neutropenia), which means his infection-fighting power is suppressed. This also means he can't start at preschool this week, which he was looking forward to as he and Grace will now be at the same school. So, in addition to all the pokes from the hospital and clinic, he got an additional blood-boosting shot (not a medical term I realize) in his arm which stung like a bee. We are hoping the fever does not return, and we can keep close to home until his blood counts are better. The doctors are hoping he can continue with the next appointment...

On to happier news. Clay gained 4.5 lbs and 1 inch in August! (When the doctor saw the chart this week she asked if he was wearing boots.) The MRI done in late August showed the main tumor has shrunk by 20% since chemo began. Our oncologist was pleased, and felt that besides being smaller, it looked less active overall. (again, not the medical term he used). No significant change in the spine cells. The next MRI is after two cycles of chemo, most likely in November.

Wednesday, September 2, 2009

Summer Fun

August was wonderful -- a month of our old lives back. Most importantly, Clay has been healthy and happy. Over the past month he has gained 4 lbs...even for a small person this takes a good amount of eating (and time). To allow for this Clay started waking up at 5 a.m. or so and coming into our room, waking JD up saying "I am super-duper hungry, we can go eat breakfast?" After a few weeks of this routine, we bought him a clock, taught him to recognize the number "6" and started leaving him a bedside snack should he wake at 5. This has been successful. Today he showed up bedside at 6:01 (bonus -- he has learned to tell time!). He is also up a shoe size and has gained an inch.

The beach was hot and sunny, and our house right on the bay. Every day we hit the waves at the ocean, collected shells, relaxed, and the kids rode scooters at night to the ice cream store. Who could ask for more?

Friday, August 7, 2009

Hiatus Ahead

Thursday was the last of the 10 "induction" rounds (oh, have I mentioned the countdown before?!?). The week leading up to this was a much better week than the one prior. Clay regained the weight he had lost and was much more active and himself this past week. So with his blood counts better and side-effects almost gone, they gave him a half-dose of vencristine. The final "kicker" I suppose, before a few weeks off chemo. We had a small family celebration tonight for Clay to mark his bravery and to talk about the upcoming break. He didn't eat the brownie dessert, but he did ok on the pancakes he requested for dinner (...hint of indulgence on my part? please ignore prior posting on health food). Our plans for the break include our annual week at the Delaware beach, and my hope is to post nothing more than beach photos. Please keep your fingers crossed.

Grace just completed a week-long art camp for 6-8 year olds entitled "Me, Myself and I." Those of you with girls this age know just how perfect that is. Today was the "art show" with friends and family invited. Clay, Cara (one of our wonderful babysitters) and I went. It was interesting to see 6-8 paintings from each child posted on the studio walls. Several of Grace's paintings were "Narnia based" (theme: where would you like to be?) with Lucy and Edmund, Asland and the White Witch taking center stage. My favorite self-portrait of Grace's has a bright yellow background and is of her and Clay at the park. I love how she always paints his eyes green and hers brown. One classmate's painting was of a child on a stretcher being wheeled into the ER. Of course I wondered what had happened to this child to inspire them to paint such a scene. Then I noticed that the doctors and nurses rushing the stretcher into the exam room were all RABBITS. Is this something from "Alice in Wonderland" that I missed, or was this child given a bit too much morphine? In an otherwise happy event this made me sad to think about what Clay could already paint.

Thank you to the Thursday night dinner club for the wonderful soup. I would love the recipe posted! Enjoy the next few weeks everyone and thank you for sticking with us.

Saturday, August 1, 2009

The Barn is in Sight

You know how when you take a trail ride the horse starts to gallop and generally perk up at the end of the ride, when they know the barn is in sight and they are almost done hauling your *ss around? That is exactly how we feel with visit number 9 now behind us. This was a tough week for Clay with very little eating, even less sleep, and lots of aches and pains. Given this, the doctor cut one of the medicines out entirely on this visit. We are hoping to have a better week ahead.

JD's mom has been staying with us this week which has been a wonderful help and fun for both Grace and Clay. My mom came to part of this week's clinic and then came back to our house to visit with Inez. I took Grace out for a mother/daughter dinner, and while we were walking to meet up with our mother/daughter friends Grace said, "Isn't Clay lucky...he is home with 2 Grandmoms!"

-- Mary

Saturday, July 25, 2009

Week 8

Last Saturday (which happened to be my birthday) we visited with good friends at their beautiful home on the Eastern shore. Ellie, a true princess and lover of a good party, wished me "happy birthday" at the top of each hour. Grace asked, "are you as old as grandma now?" Using my ever-increasing wisdom, I ignored her. We all enjoyed a beautiful, relaxing day.

Another long visit at the clinic on Thursday, again spent in "solitary confinement" as Clay has a bad cough. Six hours of watching videos and sitting in a reclining chair makes for a long day, almost like being on a long flight, except we aren't going anywhere. Two more appointments in this round to go.

Neighborhood warning: JD has another mulch delivery outside our house. Grace's sign should keep all drivers not focused on the road (Betsy?) safe.

Sunday, July 19, 2009

Week 7

Thursday's appointment was another long one, broken up only by a fire alarm, which required everyone to vacate the building. Thankfully it was not a long ordeal, and seeing the firetruck is always a thrill for Clay. Clay's blood levels are good and the doctor is very pleased with what she perceives to be fairly minor side effects. The biggest stress of the appointment has become the tape /bandage removal after the infusion is done. The needle stick is now fairly minor, but taking the tape off is scream-city with all bets off -- major kicking and the works. If anyone has tips for how to get sticky stuff off, please share them.

While Grace accompanied us for a few hours of this visit, the clinic has signs all around discouraging friends and siblings from coming. They are calling this summer the "blizzard in July" of swine flu. JD, Grace and I each did 10 days on tamiflu -- one nurse told me "...we take them like tic tacs around here." Grace made a poster with 4 stethoscopes to represent the 4 visits left, and when we got home Clay gladly scribbled one out...3 to go before a break.

Monday, July 13, 2009

Change of Scene

After spending too many hours in exam room #10 this week, we decided we all needed a change of scenery. So, on Saturday, we took an overnight to Baltimore to have some fun and hit the aquarium. We stayed at a Hilton Garden Inn in "Harbor East" which is on the recently gentrified side of the Inner Harbor. With a Whole Foods to the left of us and a Starbucks to the right of us, J.D. noticed, "we've arrived in Clarendon!" We rode the water taxi to dinner in Fells Point and back again, after stopping for a new hat for Clay. We let the kids stay up way too late watching an Adam Sandler movie in bed, we saw the Dolphin show, we saw sharks and wonderful birds in the Rain forest, we ate lunch in Little Italy. Monday -- we are exhausted -- but it was worth it.

Wednesday, July 8, 2009

Some Week

Just when we thought things were going well...Clay developed a fever on Sunday night which required a visit to the E.R. After 6 hours of antibiotics, hydration, and endless tests, we were sent home. Since our new goal in life is to not spend overnights in a hospital, this made us all very happy. On Monday, back to the clinic for a second dose of I.V. antibiotics and several hours of I.V. hydration. This more than anything perked Clay up as he was dehydrated from not eating/drinking. He is doing fine now and seems to have rebounded. Our great friends the Ambrozy's took Grace for these 24 hours and for her it was like going to Disneyland -- a sleepover with her friend, camp, swimming and dinner at the club.

Friday, July 3, 2009

Halfway to 10

Thursday was the 5th visit, the halfway point in the 10 "induction" rounds that Clay has to get through before the next MRI and a break from chemo. J.D. took Clay for this visit and it was the new record for speedy -- only 3 hours. To think we would ever be thankful for "only" a 3 hour doctor appoint and "only" one chemo drug...now I know what resilient and adaptable means. With no carboplatin given during this visit, Clay had no nausea and therefore we get a break from giving him Zofran, the anti-nausea medicine.

I had a telephone consult with a Naturopath from Oregon last week, and we now have a stocked cabinet of homeopathic solutions and vitamins. There truly seems to be a connection between vitamins, diet, and cancer-activity within cells. And, these supplements should help combat the side-effects of chemotherapy and strengthen Clay's immune system. However, the challenge is clear: trying to get a 3 year old to take a mushroom and fish oil supplement is no easy task. Especially a child like Clay that likes to keep his foods very plain and can't be swayed by ice-cream or most kid favorites. For those interested, Beating Cancer with Nutrition is a great resource for information and recipes, and will inspire even the healthy to make better food choices. Thank you to Patti Kelly for giving me so many contacts in the alternative-medicine world.

Finally, thank you for a wonderful meal last night Glenda. You have been so generous in time and energy in organizing the Thursday dinners and in checking in to see how you can help.

Happy 4th of July.

Friday, June 26, 2009

Week 4

Clay is doing well -- he completed the last week of his preschool's camp and is enjoying our new swing set. This week's appointment showed no significant drops in his blood counts (this is a good thing). Overall, the clinic was a bit chaotic as more siblings seem to be along due to school being out. The many generous organizations we are learning about, such as Candlelighters, always have volunteers on hand giving out snacks, games, and stuffed animals. This week was no exception and Clay has added a large yellow chick to his growing collection. Our next two appointments will thankfully be shorter ones as he gets a break from the medicine that requires a 1 hr drip (and a 2 hr infusion of saline to buffer the impact). His patience for spending 6 hrs. in a doctor's office each week is waning.

I have been reading a good number of books lately searching for insight on how others faced with difficult situations have found faith and strength when their world has turned upside down. (There are rows and rows of these books in the Arlington library. Please let me know if you have a favorite.) The most helpful to me so far have been When Bad Things Happen to Good People written by Harold Kushner, a Jewish rabbi whose son was diagnosed at 3 with a disease with no cure. Also, Learning from the Heart, by Daniel Gottlieb, who became a quadriplegic at 33. In a chapter called Children's Dreams and Parent's Faith, he quotes Kahlil Gibran from The Prophet. I think this is a beautiful poem for any parent.
Your children are not your children.

They are the sons and daughters of Life's longing for itself.

They come through you but not from you,

And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,

For they have their own thoughts.

You may house their bodies, but not their souls,

For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams

Friday, June 19, 2009

Week 3

We are getting into a routine now on the "appointment day" as Clay calls it. J.D. took him for the first shift -- the hardest part -- in this week's visit. The numbing cream and the familiarity of the routine seem to be helping Clay's anxiety. His blood levels were fine. The Doctor kept the dose at half for one of the medicines, as last week went well with few side effects. Three hours into it, Grace and I arrived. Grace was so excited to be joining Clay she put out her clothes the night before (after we said she couldn't sleep in them). She spent quite some time packing her bag...this girl likes to be prepared. She packed a 500 page book (The Secret Garden), a video (Charlotte's Web), a baby doll (Holly), and some snacks. Of course she did not touch anything in her bag during the actual visit, but instead went straight to the art table to make necklaces. ("Grace, can you say hello to Clay first?!?")

Thanks for the Thursday dinner club for 2 dinners (small schedule mix-up) last night! Something good for everyone. -- Mary

Sunday, June 14, 2009

Week 2

Thursday's appointment only took 5 1/2 hours...progress! (ha ha). J.D. and I have learned it is best for us both to be there for the first part, when we review Clay's blood counts and meet with the doctor to discuss the plan for the week and ask our questions. It is also the most stressful for Clay since they have to "access his port" which is more frightening than painful, but somehow seems better with both parents nearby. (He did tell me very seriously when we were discussing the upcoming visit "Today I am going to smack someone..." to which I did not know how to respond since it sounded like a good idea to me.)

This week the doctor decided to halve the dose of one of the chemo medicines, since last week Clay had some pain overall and in his jaw in particular. We see the impact of this already -- on Saturday Clay rebounded well and overall had a really good day. Today he is his happy self.

Last week the doctor seeing us said "welcome to medical school" and she was not kidding. To think only 2 months ago we were clueless to much of our current conversation and focus. Blood work means watching about 20 items to see what negative impact the drugs are having on white blood cells,red blood cells, platelets, etc. So far not too much decline, and in fact he gained a half pound last week.

Thanks to my good friend Maria for joining us for several hours on Thursday and brightening up the visit for both Clay and me. Also to the Jackson's, for the Cars flip flops for Clay and the ravioli dinner. And the Gillick's, for the bringing us several more meals this week and likely contributing to Clay's weight gain as he loved the meatballs.

Wednesday, June 10, 2009


Yesterday J.D. dropped into Grace's school during her classroom's "Sri Lanka day" party (...why learn Spanish when you can learn Senegalese?). Grace's teacher talked him into staying for lunch, so he sat at a small table with Grace and her friends. To liven up the conversation, he asked Grace's friends what was the most unique thing about her. They unanimously said "her laugh!!!" Anyone who has heard Grace laugh full throttle with her head thrown back knows what a joy it is. Being surrounded by this laughter is giving us all strength...Ayubowan! (may you live long!)

Monday, June 8, 2009

Week 1

Thursday was a long day -- 7 hrs in the falls church location. Testing blood, meeting with the doctor, three hours hooked up to the IV. They have an art table and seats with tvs and videos, but it is a very long time to expect a 3 year old, even one as good-natured as Clay, to be ok. Thankfully my mom and JD joined me for shifts -- none of us expected a 7 hr visit. Friday was also a long day as Clay didn't feel well. The anti-nausea medicine seemed to work, but he was uncomfortable with aches. Saturday he rebounded and seems to be feeling ok except for jaw pain, which is one of the side effects. A special thanks to Grace's former teacher Tatijana for an awesome fajita dinner, complete with beers for the grown ups.


Friday, May 29, 2009

Pre-treatment tests are done

Two days at the hospital this week. The first, to put in the port through which the medicine will go; the second, for follow up MRIs. Clay was a trooper for both days. We did learn that scheduling an afternoon MRI is not great for a 3 year old, since they cannot eat or drink anything all day until after the test. The first thing Clay said when he woke up afterwards was "I can have a doughnut?" Here he is in the recovery room eating a ham sandwich. Thank you to the "Thursday night supper club" for a wonderful meal waiting for us at home.

Some positive news: The brain MRI showed the tumor had shrunk down to half its former size. Apparently the bleeding made it swell; 6 weeks later it is smaller and has fallen to a safer location away from critical brain functioning. Clay's surgeon said "If only he were already under treatment we could take great credit here!" The spine showed no change - some coating of tumor cells- but no progression of disease in 6 weeks. So, we get a break and don't start chemo until next week. The first series will be for 10 weeks, one day each week at the clinic closer to us in Falls Church. JD in particular will miss the drive we have been making through the city to Children's Hosptial (especially in the rain, at rush hour).

Sunday, May 24, 2009

Where we are today

We know many of you have only heard bits and pieces of what has happened. On Easter weekend Clay was playing with his cousins, and he fell and hit his head. Since he immediately started throwing up, JD and I took him to the emergency room. A CT-Scan revealed blood in his brain, which is life-threatening as it increases intercranial pressure which can cause a seizure. Rushed (well, not really -- it took 4 hours to get the ambulance - but that is another story) to Georgetown, the neurosurgeon on call did an emergency EVD procedure (a tube to drain fluid) to get Clay's pressure back to normal. Then, at 4:30 a.m. on Easter Sunday, they took him for an MRI of the brain. A few hours later JD and I learned the blood was caused not by a fall, but by a tumor that had hemorrhaged.

We transfered Clay on Easter Sunday to Children's National Medical Center. Almost 2 weeks later they were able to remove the EVD drain and send us home for a period of recovery for Clay and planning next steps for the rest of us. Many thanks are due to the amazing Dr. Amanda Yaun, Clay's neurosurgeon who not only performed the biopsy, but was brilliant, and kind. She even made a head bandage for Curious George to match Clay's. They don't teach that in medical school, do they?

It has been a terrible, exhausting month, made better by the friends and family who have surrounded us. Meals, phone calls, packages for both Grace and Clay, endless love and support and prayers. It has been difficult to return calls and e-mails, so please know every bit of help has been appreciated. I am amazed at the kindness we have received --even from people who didn't know us before this started--but have rallied to our side with advice on protocols, doctors, and expediting hospital transfers on Easter Sunday (no easy feat).

We will do our best to thank you and keep you informed through this blog. Next week we will begin "treatment" (chemotherapy) after two more MRIs to check the current status of things.