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?!

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.

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!

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?)

Mary

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.

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...

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.