Maintenance…. Hmm, What is That?

Many of you have asked what happens next and I am finally delivering on my promise to do a post about it.  First, leukemia treatments vary based on a myriad of factors and which studies, if any, a patient is enrolled in.  In Lenox’s case, she had only 3 phases of treatment – Induction, which was the first 29 days; Consolidation, which was the 6 months we just wrapped up; and Maintenance.

The thing about childhood leukemia is that, with all of the great medical advances, it is not hard to get a patient into remission; the challenge for researchers has been figuring out the ideal combination of factors to keep it in remission. Lenox was medically considered in remission during Induction, as is the case with many patients.

As quoted from the National Cancer Institute: “Among children with ALL, more than 95% attain remission and 75% to 85% survive free of leukemia recurrence at least 5 years from diagnosis with current treatments that incorporate systemic therapy (e.g., combination chemotherapy) and specific central nervous system preventive therapy (e.g., intrathecal chemotherapy with or without cranial radiation).

It can’t be emphasized enough that the great results are indicative only if you fully follow the treatment plan – which in Lenox’s case is to follow through vigilantly with Maintenance. The Maintenance phase means just what it implies – we are striving to “maintain” her remission status.  Lenox’s maintenance phase lasts 2 ½ years from her diagnosis. Lenox was diagnosed July 9, 2011 so she is estimated to complete Maintenance in just about 2 years from right now – mid-January of 2014; that is just a few weeks before Lenox’s 6^th birthday.

Maintenance is cyclical so we will go through the exact same cycle every four months. With 2 years left that means we should have 6 of these cycles. A 4 month (or 113 days) cycle looks like this for Lenox:

• First day of a cycle is a day surgery for intrathecal (spinal) methotrexate (one of her types of chemo drugs) and an IV push of vincristine (another chemo drug)
• First week of a cycle is 7 days of steroids
• 8^th day of a cycle is another IV push of vincristine
• Every day of the cycle is oral mercaptopurine. This is one she has been on the last 6 months orally at home as well, but the dosage is nearly doubled for Maintenance.
• Once a week is oral methotrexate. This is the same chemo drug she was getting in very high doses over 24 hours during her 6 hospital visits during Consolidation phase
• Once a month is a clinic visit for pentamidine. This is a ½ day clinic visit usually as it’s a slower IV drip and then they watch her for awhile afterwards. This is a drug that protects her from a type of pneumonia that she is susceptible to and replaced an oral med that she HATED taking.
• Around 2 ½ months into the cycle (Day 85 for those counting) there will be another day surgery for intrathecal (spinal) methotrexate

While that may look daunting, as it was for us at first, if you really look it over it means a rough first week each cycle, but otherwise equates to only about 4-6 visits per cycle depending on how we are able to time the monthly IV drip. In the beginning, we will likely be going every 2-3 weeks just to get counts done, but they said if our initial treatment goes well, we may be able to go in just once a month! How about that!

Right now Lenox is still taking all oral medicines crushed in juice. Not sure if I ever mentioned it but we purchased a nursing facility grade medicine crusher and it has been the best purchase – med prep has gotten infinitely easier. Lenox has indicated an interest in learning to take pills so we will get working on that with some “training”. Wow, how nice for her if she can learn that – keep your fingers crossed.