Christmas Eve Update

JD here

It has been 2 years and 8 months since Clay's first trip to the emergency room with what we thought was a severe concussion. 24 hours and three hospitals later we learned that Clay was suffering from a slow-growing cancer called Juvenille Pilocytic Astrocytoma (JPA) which is part of a class of cancers called low-grade gliomas (PLGA's)that account for roughly 30% of pediatric brain tumors. While less is known about pediatric conditions than adult disease relatively less is known about PLGA's due to a set of factors including physical, institutional, financial and legal. What is known about PLGA's is that while there is no cure for the disease many children survive the disease by using a combination of chemo and radio therapies to contain its growth until maturation to adulthood when the cell mysteriously stops mutating. Evidence of the lack of medical understanding of PLGAs is that the first line of defense is a chemo protocol that is over sixty years old.

It is not uncommon for PLGA kids to undergo chemo therapy for a period of time and then to experience multi-year periods of stability. Renewed growth is countered by a new chemo protocol. The trick in SUCCESSFULLY managing the disease is to contain the growth in a way that the cumulative impact of the disease AND the therapies does not severely impair the child.

Unfortunately for Clay his disease has not followed the rules of PLGAs. This tumor-type rarely bleeds; Clay's first presented itself through a hemorrhage. The tumors grow but rarely spread; Clay's disease had gone beyond the large mass in his brain to include a sheathing around his spinal cord when first diagnosed. Clay has another confounding genetic condition called NF1 that which can interact with the disease and/or chemo in unknown ways.

It took 2 years and three different chemo protocols to bring a period of stability to the disease which lasted a mere 3-4months. We shared with you Clay's six-month scan showed new growth and increased pressure on his spine resulting in "fraying" of spinal cord which the docs surmised was from blockage of spinal fluid from the disease. As you know Clay already has a brain shunt to relieve the cranial pressure from the main tumor; there is an equivalent surgical implant for the spine which Clay may need to endure.

At this time we did another round of consults with the few experts on this disease and found that there was no consensus on next step for Clay. We decided that we would enroll Clay in a clinical trial at Johns Hopkins for a biologic agent, Sorafenib that has shown some real treatment promise. Sorafenib had been developed and approved for a form of melanoma and was being studied for its safety and effectiveness with PLGA's because this type of melanoma and PLGA's share a similar cellular mutation. Sorafenib was designed to disrupt the "signal pathway" for this mutation which in theory should disrupt the growth of the cells. After two weeks of paper-work, diagnostics and a full day at Hopkins with the drug in Mary's purse ready to walk out and begin the protocol, the lead institution of the trial, NYU called Hopkins and pulled Clay from the trial due to his history of hemorrhage. At the eleventh hour Mary and the Hopkins docs switched Clay to another experimental agent (RAD 001) which has similar qualities as Sorafenib.

At this time Clay described his eyes as being "fuzzy" followed a week later by nearly 90% loss of vision. Suddenly Clay was able to distinguish only the largest contrasts; his ability to navigate the bathroom or his dinner plate was gone. He was literally smacking into walls and going down stairs on his bottom. The "hope" was that the vision loss was due to the new drug --which if the case would allow the vision to return after cessation of treatment. This proved not to be the case and the latest MRI---taken a mere six weeks later brought us very disturbing news. The disease had progressed roughly 25% since the last MRI with advance in both the main tumor area, the spinal column and possible two new spots in the brain.

Clay's coordinating physician, Dr. Roger Packer (truly one of the top 5 authorities on this disease) did not spare us his concerns. The speed of the advance was "highly uncharacteristic". It is "rare" for this type of cell-type to mutate into a "more aggressive form" but not "unheard-of". Packer used the terms "proving to be chemo-resistant" and "on the verge of snow-balling out of control". While he was clear not to present this as his prognosis at this time, he did suggest we contemplate many new scenarios such as massive radiation(which would most certainly leave Clay significantly damaged) and "end-stage situations".

Dr. Packer recommended and we agreed to a chemotherapy protocol combination of Avastin and CPT11 which has shown some very good results in providing a quick punch to the disease. The down-side to the drug is that the shrinkage does not last all that long and when growth returns it is usually fairly strong. In addition, one of the side-effect risks is especially dangerous to Clay. Avastin is effective because it "goes after" the blood supply to the disease. For a kid with a history of hemorrhage this increases the danger 100-fold. With the enemy making such inroads we felt we had no choice but to throw everything at it we have at it in hopes to stop the momentum . So on Thursday Clay began this new treatment.

Now for some good news. First, Clay did not have an allergic reaction to the new drugs and the side-effects are so far manageable. This is HUGE because it means we can continue the treatment and give it a chance to work. And on his vision----he was prescribed a powerful steroid to give this blood vessels and nerves a "boost" and that alone has produced some vision improvement. What this means is that Clay's vision "machinery" still has some capability so if the Avastin/CPT11 succeeds in pushing back the disease he could regain greater vision function.

Along with the steadfast support of you, our family and friends, this bit of good news has cheered us greatly. Through it all Clay has been in remarkably good spirits and there is no way you could tell from his attitude that he was not your typical 6-year old excited about Christmas. We are hopeful for more good news over the coming weeks and Clay's docs think it reasonable to be hopeful. It is not lost on us the powerful symbolism of this time of year and we look forward to re-telling the story of Clay's Christmas Miracle in the many years to come.

From the pure of heart:

Clay to the nurse as she is preparing him for his latest MRI (which includes full, intravenous sedation): "Don't worry, Mouse-y and I are excellent at this!"

Grace, when asked what she wants for Christmas: "What I really want is for Clay to see again."

Clay, while strapped to the drug infusion machine at the clinic: "Daddy, when you and I are in heaven will you spread your blanket next to mine?"

May you all have a blessed Christmas and holiday season.

Please pray for Clay

We could really use your prayers this week. Clay has lost much of his vision, and the doctors feel it is due to tumor progression. We have stopped the oral medication and are switching this week to what the doctor feels is his best shot for regaining some vision and stopping the progression. Today Clay is having another MRI to rule out a hemorrhage. Tomorrow he will have a PICC line placed, and Thursday he will start this new chemotherapy. Please keep him in your thoughts as we pray for a Christmas miracle to restore our boy, who just turned 6 last week.

New Protocol

Thank you for all of the e-mails wishing us good luck on Friday. It was a very long day at Hopkins -- we left the house at 8 a.m. and got home at 8 p.m. Things were moving along fairly well on schedule until about 3 p.m. The trial we were signing up for had been approved that day, and I was going over the potential drug side effects with the researcher when the final word came in from NYU (the lead hospital for the trial) that Clay was ineligible for the trial. Since his tumor hemorrhaged once, they decided it was too high risk to include him in the trial for fear that it could happen again (an unlikely, but serious side effect of the drug). At that point Clay had had an MRI, x-ray, physical exam, and blood tests done. So, we switched gears and starting discussing plan B. Another oral drug that is meant to switch off what is making this tumor grow. This drug is also in clinical trial, but the trial is closed, so we are doing the drug "off-trial." Enough kids have been enrolled in the trial and are doing well, and bleeding is not a potential side-effect. So for now this is the protocol for Clay and we pray it does what it needs to do. For now we will have weekly appointments to check his blood work, and if all goes ok, another MRI in three months. A special thanks to my mom for keeping Clay happy for hours while I met with the doctors.

November 27

It has been a long time since I've posted an update. I think this is because it is much easier to share good news than bad. Clay's October MRI showed tumor progression. This caught us by surprise since overall Clay has been feeling well and we were hoping for him to get a break that lasted years, not months. So, after discussing our options with several of the leading pediatric cancer centers in the country, we are leaning towards trying a "biologic." This is the newest type of treatment, and an alternative to chemo. These drugs aim to shut off the blood vessels that feed tumor growth. Whereas chemo kills all rapidly dividing cells (both good and bad), these newer treatments are a more targeted approach. Johns Hopkins has one in a clinical trial and this seems to be the best option; targeted to his disease, and hopefully fewer side effects than chemo. The uncertainty is in whether the drugs will actually work, since they are new, and therefore have far less data behind them then the other protocols which are 10-20 years old. Clay will have another MRI next Friday to get a pre-treatment baseline, and then we will make our final decision.

In spite of this setback we have had a good Fall. Clay has gone to school each day, and he has made new friends. When I pick him up he is almost always smiling and eager to share news of his day. As we walk across the schoolyard to meet Grace he calls out "hellos" to any friend he sees getting on the buses. He is enjoying learning and likes the routine of school. His teachers are wonderful and eager to see him succeed, but also very accommodating to his needs (such as naps --taken under their desks sometimes).

Please keep Clay in your thoughts and prayers on Friday for good results on the MRI. I will post another update once the protocol is set.

Summer Ending

Clay got on the yellow school bus yesterday to begin Kindergarten, just like all the neighborhood kids. He is exhausted, but he did it! Grace helped him find his class and his cubby, and she was happy to have him alongside her. With school starting and all the activity that brings, I wanted to post a few of my favorite summer photos. After the aborted beach trip, the kids and I traveled to Nantucket, and then JD joined us for a few weeks in Vermont. We enjoyed great weather, beautiful places, and time with good friends along our travels. All this,while at home there was an earthquake and a hurricane (really!).

Allegra we love ya!

Just a quick update to say that Clay is doing great. The allergy medicine seems to be doing the trick and we have had no nasty headaches or nausea since we started him on Allegra. His next MRI is scheduled for October.

As I sit here at home, back a few days early from a trip to the beach, I am trying to find the humor in the past week. Things started out badly on day 1, when the 105 degree heat (even at the beach) proved to be too much for Clay. We had been in Delaware about 30 minutes when Clay vomited into a planter in the center of town. We have gotten pretty used to such occurrences, and so we marched on to the ice cream shop. But matters didn't improve, and several days later he again vomited, this time on a hayride around the state park. With that, we packed things up (actually the park ranger off loaded the two of us) and cut our trip short. On Thursday we headed to the hospital for an emergency- CT scan to see if the shunt in Clay's head was clogged, and causing the headaches he has been suffering from for the past several weeks. The good news is that nothing seems amiss -- good ventricles, no tumor growth. The neuro-oncology team declared it "a beautiful CT!" Still, Clay was feeling awful.

So off we went to the pediatrician. The Doctor's first response when she saw us was, "They sent you to me? Are you kidding?" Not too confidence building. But still, we were there, and Clay was feeling awful. So after a quick glance at him, she said "this looks like a kid who has seasonal allergies" and sent us to CVS to get some Claritin. So I know there is a joke here along the lines of "how many neurosurgeons does it take to change a lightbulb...." but I am holding my breath, waiting to see if this just may be the most expensive allergy diagnosis ever. We are keeping our fingers crossed, and hoping to resume our summer travels next week if all is well. Here are a few shots from our brief trip.

July 2

Clay and I went to the clinic to meet with the neuro-oncology team this week. Dr. P was shining a flashlight in Clay's eyes while moving his fingers, testing for Clay's field of peripheral vision. It went something like this:

Dr. P: "Clayton, look at me. What finger am I moving?" (repeat 10 times).

Dr. P: "Wow, Clayton, you do this test really well."

Clay: "What do you think? I've been coming here since I was 3. Now I am 5 and a half."

Clay has started adding, "Duh." to the end of his sentences when he thinks you are missing the obvious. I was thankful he left it off this particular exchange, but it made me laugh nonetheless.

All the nurses and staff were happy to see Clay since it has been 4 months since we've been in the clinic. In this time he has grown 1 inch and gained another half-pound. They told us to expect a growth spurt after chemo and we are happy to see him shooting up. The best news of the appointment was the all-clear to get the port removed. This has been scheduled for July 11 and should be a quick, "happy" surgery, unlike the past 4 Clay has had to endure.

The summer is off to a good start, and Clay has enjoyed two weeks of morning camps, as well as swimming lessons. Headaches still slow him down, and we are working hard to see if there is any pattern to when or why he is getting them.

Happy 4th of July to everyone!

Preliminary Results

I spoke with Clay's neurosurgeon and the MRI results from last Friday look to be stable. I discussed some of the headaches and vomiting issues that Clay was having with her, and she seems to think much of it is related to the shunt. Apparently many of her patients with shunts are sensitive to heat and she thinks that is causing his discomfort more than anything else. This is good news; although trying to control the heat in Washington is no easy task. We have an appointment to discuss the MRI in detail on June 29. It seems likely that the plan will be another monitoring MRI in three more months. Meanwhile Clay enjoyed the last few weeks of pre-school and is looking forward to a few weeks of morning camps.

Thank you to all our friends and family who called, wrote, prayed, and sent us positive vibes for this MRI. "Stable" has become one of our favorite words. I am convinced all of the love and energy that is directed towards Clay from so many people is impacting him directly.

Grace's cast came off and she is doing fine. She handed out Harry Potter stickers to her doctors at her last appointment. I think she has a crush on her surgeon.

Happy Father's Day to everyone! We are enjoying the day helping JD garden and eat dark chocolate.

Cool Cast

For friends and family looking for an update on Grace: today she got a cool new cast. The most difficult part for Grace was choosing the color: pink, red, blue, green, purple, black, yellow, or orange? And of course the physician's assistant said if she couldn't decide, he could do stripes! All of this has propelled Grace to rock star status in the second grade.

We also got to take home a copy of the x-ray showing the pin holding her bone together. Maybe this will be good for a future show-and-share day. Next step--cast off in two weeks, then 4-6 weeks of physical therapy to get everything working again.

Please keep Clay in your thoughts next week as his next MRI is on Friday morning.

Grace

Just when we were happily adjusting to life outside of doctor's offices...Grace took a bad bounce at gymnastics class on Sunday, and broke her elbow. Two long days - one in the ER - one at an orthopedics office and it is confirmed that she needs surgery to repair the bone chip. So, off we will go tomorrow to get that done. Clay was excited about this news and asked her, "What flavor [gas] are you going to get? They have bubble gum, cherry, mint..." (This passes for normal in our house.) She has been in a good bit of pain, but is eager to get her arm back in motion and have tomorrow behind us.

P.S. Thank you Donna for sharing your photo of Clay taken at Grace's most recent soccer game (seen at top right).

May 10

We recently enjoyed a fun night at the Nationals Stadium - for a Horton's Kids event. Here are some photos taken down on the field where everyone got to bat. Clay particularly enjoyed sassing Screech.

Things are good in the Derderian household. Clay is feeling well most of the time with only intermittent headaches and nausea. I took him to the clinic today to get his port cleaned, and he is weighing in at 36 pounds. I don't know why mothers in general are crazed over their children's weight, but it has become somewhat of an obsession for me. He was down to 30 pounds this winter, so this comeback makes me very happy. We had a lovely, low-key Mother's Day. Clay gave me a yellow daffodil made from his hand print, and Grace a flower in a pot with this: "If I had a single flower for every time I think about you, I could walk forever in my garden" (Ghandi).

We met with a team of volunteers from "Make A Wish" recently, and Clay is being granted a wish to enjoy now while he is off treatment. We have had several funny conversations with him about what he might wish for, and as you might imagine the lobbying is getting intense. So far he is not buying into going to Disneyland (Grace), getting a live-in cook (me), or a night with Lindsay Lohan (JD). What he is sticking with is going back to the Florida Keys "but NOT jet skiing, maybe kayaking." If anyone has any great places in mind please send them our way, at this point all things are possible. Well, not all things. In-ground swimming pools, vehicles, and firearms are excluded. Imagine how those "wish" conversations went!

Clay's next MRI is June 10. If all is well the port will be removed soon after.

-- Mary

A Happy Easter

It has been a great few weeks since our last posting. Clay has not been to the doctor except to get his port cleaned which we will do each month until it comes out. He has been going to school each afternoon. He completed karate and is moving on to level 2 classes. We are feeling God's blessings of strength and renewal this Easter. Two years ago on Easter Sunday Clay was transferred from Georgetown to Children's Hospital in an ambulance, unconscious from emergency surgery. Two years later we are catching our breath and enjoying a wonderful Easter weekend. We hope you all are doing the same.

Great News

We met with Clay's doctor on Thursday. Since the tumor is stable and we are approaching the one-year mark of this protocol, we have decided to take Clay off chemotherapy for now. There is no predicting what is ahead...about 50% of children have no tumor growth in the first two years off chemo. So we will watch and pray. The next step is another MRI in three months. If that shows continued stability, then the port that is in his chest will be removed. Since we already skipped a week for our vacation, and the second week for the MRI, this is actually Clay's third week with no clinic visit, no anti-nausea medicine, no chemotherapy! This Friday, instead of going to the clinic, Clay was able to go to school. We went to the park, we walked the dog, we tried some corn beef and cabbage for St. Patrick's Day. The sun was shining in DC and the temperature reached 80 degrees. A great Friday.

Good News

Clay's doctor called yesterday to say that the MRI showed everything is stable, which is the report we were hoping for. We will meet with him next week to discuss the MRI in detail and discuss next steps. Thanks to everyone for keeping Clay surrounded by your positive thoughts and prayers.

Hawks "Clay"

We just returned from 5 wonderful days in the Florida Keys at Hawks Cay (renamed during our trip to Hawks Clay to better suit us. ) It was just what we needed -- warm, sunny skies; several swimming pools (one with a pirate ship in the middle); great food; and endless activities including a kid's camp. Clay's favorite activity was jet-skiing. He and JD rode one jet ski, Grace and I rode another, and the guide rode the third. Grace kept asking me if we were lost in the ocean, as all the boys were soon out of site. The photo on the left is a shot of Clay just after the ride. It was hard to get on that plane heading north yesterday, and Grace kept asking "why don't we just live here?" Good question.


Please keep Clay in your prayers tonight as he has an MRI in the morning.

Miscellany

Clay is finally back in school a few days a week, now in the "lunch bunch" session. This afternoon session is only for 5 year olds, so there are far fewer children in this group. Clay seems to like this better -- less noise and confusion, more attention, more opportunities to make friends. His Montessori class has 26 kids, and for the winter that is just too many chances to catch a cold. He is slowly putting on weight and his energy is back. He (and JD) are enjoying a Karate class each Saturday. We are keeping our fingers crossed that February passes without any more drama. His next MRI is March 10. This is a big one for us---if things are stable we have a real chance to discuss taking Clay off chemo. Please pray for positive news from this MRI.

It hit me last night just how much time Clay has spent with JD and me this winter, after hearing his commentary while trying to open a Chinese fortune cookie. He was sitting at the kitchen table struggling with the cellophane, while I was nearby in the kitchen, and I hear: "Come on!! Easy to open?....who are they kidding?!" I don't think this is how most 5 year olds talk, is it?

Kristin, I am sorry to report that Clay has moved on...
On our way into the clinic last week he told me "I still love Kristin, but she is married now, so I have a new girlfriend." This new love is far younger (aren't they always?), and he is working on a Valentine necklace for her. But we sure miss you each week Kristin! Here is a birthday photo of our little heartbreaker, enjoying himself at the Zoo (thank you Lawrence for the photos!).


Mary

A New Year

We made it through 2010 and for that we are thankful. We may have limped over the finish line, but we did it together, with family and friends all around. The consistent theme handwritten on the Christmas cards we received was "2011 has got to be better." Indeed!

Today Clay and I visited the Lego exhibit at the National Building Museum. Just outside the building we saw Aslan's likeness (the lion from the Narnia series) in all his Christmas glory. Clay gave him a big roar! And I noticed the quote below the lion:

"The wicked flee when no man pursueth but the rightous are bold as a lion."

There is magic everywhere when you look for it. Clay is our lion. We have struggled this year, but we have also pulled together and we have learned to rely on each other. And on others. We have learned gratitude, and we have learned to enjoy simple pleasures. We have learned what a gift each good day is. We have grown in many ways we would not have ever asked for. But now we are lions! Roar!