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?