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