Ethan started the next phase of treatment, called “Consolidation”, last Tuesday12/8. The goal of consolidation therapy is to kill any Leukemia cells that remain in the body and that may cause relapse. This phase also aims to treat and prevent the growth of Leukemia cells within the central nervous system with repeated spinal taps and intrathecal chemotherapy (directly into the spinal fluid). Even though Ethan was CNS negative at diagnosis (no Leukemia cells in the central nervous system), there is still a risk of CNS relapse, a risk which is higher among kids in the High Risk ALL group.
At our family meeting last Thursday, we received the treatment roadmap for the next 56 days. It includes a series of four 4-day chemotherapy treatments, four spinal taps (the first four consecutive weeks) with intrathecal chemotherapy, and oral chemo that Ethan takes at home. Ethan had his first four-day treatment last Tuesday-Friday, beginning with a long day on Tuesday that included a spinal tap/lumbar puncture and 3 subsequent shorter days. He seemed to tolerate the first few days of Consolidation phase chemo (different drugs than those he received during Induction), with no major side effects (which apparently are more likely to kick in during the second week). He was up and down emotionally and physically, but he had many more good moments than the weeks prior. This weekend was especially positive for him — he was more active and in better spirits than we have seen since this start of this. It has been wonderful to see the “Old Ethan” the last few days — I’m hoping it can last a while longer.
Relishing the good, no matter how small, has become so important. Here are a few of Ethan’s happy moments from this week:
- The visit from the therapy dog while at the Outpatient Infusion Center made him smile more than the dogs usually do.
- Two days with extended time with cousins Max and Sam. Max shaved his head while at our house — definitely a highlight.
- Getting out to the driving range with Papa and eating lunch at the golf course afterwards (We’ve discovered the driving range is a relatively germ-free place that Ethan can go)
- Visits from cousin Jamie, Uncle Rick, and Aunt Randi and Uncle Jon.
- Decorating awesome gingerbread houses (Thank you Deerings!)
- Seeing Ethan’s guitar teacher Luke. Ethan had an uncomfortable few hours Saturday morning and wasn’t up for playing, but Luke played for him for an hour — very relaxing and soothing. At the end he was up for strumming a few chords.
- Ethan’s Arroyo basketball team shaved their heads! And Ethan’s numbers were high enough that he could visit them at the barber shop this morning. He (and Steve and I) are so grateful for his wonderfully supportive friends.
- Ethan got a kick out of his science experiment “Overcoming Gravity” this week.
- His playdate with Cooper this afternoon, which actually included some hockey playing, trampoline jumping, and use of the “Angry Bird slingshot” (homemade by Dad a couple of years ago for a birthday party).
- He had a great school session with his teacher Mrs. Lukkes on Friday — lasted longer and with a better attitude than prior sessions.
I feel fortunate for all the great moments this week. On Tuesday, week 2 of Consolidation begins. We’re hoping that he can hold on to some of the positivity of the las few days and escape some of the side effects — especially so that he can stay out of the hospital and enjoy Hanukkah.