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.