Surgery Scheduled for Next Week

Dr. Kumar called this afternoon with the news that the preliminary results of the bone marrow test had been accurate--Myla has Acute Myeloid Leukemia (AML). She checked with an expert in Kansas City, and the expert felt that it's best to get started on chemotherapy sooner than later because Myla is still relatively healthy. There's not much point in waiting and watching—this isn’t going away. (Personally, I would have expected the "sooner" advice to come from a doctor in Oklahoma, but what do I know?)

So, the plan for next week is to return to Riley to install a central line in her chest sometime next week. This line will be used both for taking blood and giving chemo. Because Myla will be under anesthesia for the surgery, doctors will also give her the first dose of intrathecal chemotherapy, or the first dose that goes in her spine.

Later that day, Myla will also get her first dose of chemo through the central line. She'll receive 20 such doses within a 10-day period. Dr. Kumar said that Myla will become sick not during the days of chemo, but in the 2 weeks that follow. The total stay in the hospital for this first round of treatments will be 4-6 weeks, with 6 weeks being the safer bet because of her size--she's only 10 pounds.

Assuming that she'll start on 11/6, Myla should be able to return home for the week leading up to Christmas and maybe for a few days after that. This would be the end to the first round of chemo treatments. This process will be repeated 4 more times. This means that she should be done with chemo by the end of June.

After the first 2 rounds of treatment, all of the leukemia cells should be gone. Dr. Kumar thinks there is a good chance Myla can make it through all five rounds while also cautioning that there is a good chance the leukemia will return within a few months of the treatment's end. If Myla were to make it to her 5th birthday party, then doctors would tentatively consider her as cured as a southern ham. They didn't say this in so many words, but that's the idea.

Dr. Kumar then presented us with the option of being involved in a clinical study that is part of the Children's Oncology Group. Apparently, most parents at Riley consent to being part of the group's studies. In our case, Myla would be given the drug, Gemtuzamab, during the 6th day of both the 1st and 4th rounds of chemo. Apparently, this is a new drug usually given to kids after the first 5 treatments of chemo had failed. The study explores whether this drug will work during the first round of chemo. Dr. Kumar said that preliminary studies have shown no increased toxicity in infants. So, we are thinking through this option and have plans to talk with our pediatrician about what to do.


We also learned that when the first 2 rounds of chemo fail to kill the leukemia cells then a bone marrow transplant is often done after the 3rd cycle. Myla's cancer cells are currently growing in the lab and hospital will study them in a couple of weeks. (This made me wonder what else is growing in their little lab.) The types of cells that grow will indicate whether Myla will need a bone marrow transplant after only the 3rd round of chemo—meaning that she wouldn’t undergo the 4th and 5th rounds. This means that should would have to skip the second part of the study because the 2nd dose of the new drug is given during the 4th round. Compared to chemo, the transplant is a tougher, more aggressive treatment with higher toxicity, growing levels of rejection, and even more complications. But, that's for another day.

In the meantime, Dr. Kumar said that she will talk with the pediatric surgeon to set up a time for the surgery next week. She may call tomorrow for a phone consent for the spinal tap and the first dose of chemo in the spine. Although we have the option of waiting, she encouraged us to get started next week.