Day 35

YAY - we are low risk!

Today was the day we got the news we were praying for.  Kennedy is officially LOW RISK!  This is the doc’s first low risk case falling under the new treatment protocol.  He seems excited about it and a passionate doctor can only mean good things for K.  There are two completely different treatment protocols for low risk determined by COG (Children’s Oncology Group). One protocol is LR-C and the other is LR-M (see a summary of both below).  We were randomly selected for LR-M.  The good thing about LR-M is that she will not be treated with any cyclines and no more Peg so the side effects shouldn’t be as severe and long term effects won’t be as risky.  The bad thing about LR-M versus LR-C is that there are (6) 3-day hospital stays for higher doses of IV Methotrexate, the first being next week.  This treatment plan also means no spinal tomorrow – YAY.  There is a 97% cure rate with this protocol.  Here that?  97%!  It is still a 2.5 year chemo program but 97% outshines the next 2 years!!!!!

K and Sofia painting

The plan for tomorrow is to go to clinic and have blood drawn.  This will help the doc determine the dosage for next week’s Methotrexate.  This means we get a quick port pokey and blood draw.  If she’s feeling good, we will be off to Build-A-Bear for the bears we owe her.  Tomorrow she will also start oral chemo Mercaptoupurine (6MP).  The tricky part about this med is that it can’t be taken with food or dairy so getting it down will be our new challenge.

During our meeting with the doc, we also learned her neck/head pain and weekend nausea was probably due to the spinal tap/infusion and that caffeine may have been a quick fix.  Now we know…

Maddox and Molly

So although I should be dancing around, all I want to do is run away.  Despite the good (GREAT) news of the day, I came home to a sick little monkey and I spent the evening rubbing her belly and cleaning puke (yes, again) off the bed.  When I came home from work, Sofia came over for a play date with K.  It started off well, we painted birdhouses but about half way through, K complained of nausea and stomach pain. Sofia spent the last 20 minutes hanging out with Molly and Maddox while Kennedy laid on the couch to have her tummy rubbed.  After a nice warm bath and a 10-minute nap, K threw-up.  This time I called the doc just because I KNEW it wasn’t chemo related.  No fever.  Doc thinks she either overate something that didn’t agree with her or has a touch of the tummy bug.  He’s not worried but didn’t have a quick fix like caffeine for this one.

Maddox being a good big
brother

K started feeling better after throwing up so Maddox fed her some rice (trying to earn some good boy credit after a breakdown earlier).  Dad and Grandpa are off cleaning out the travel trailer…getting closer to selling it.  Hopefully the rest of the evening will be uneventful.

Oh and our canine friend Jaxon is now back home.  He spent the past 2 weeks with Grandpa but K really wanted me home so he has been pardoned.  Yet another child to care for.

Low-risk: Patients are randomized to 1 of 2 treatment arms.

Arm I (LR-M):

Consolidation therapy (19 weeks): Beginning one week after completion of induction therapy, patients receive vincristine sulfate IV on days 15, 22, 78, and 85; methotrexate IV over 24 hours and IT methotrexate on days 8, 29, 50, 71, 92, and 113; leucovorin calcium orally or IV on days 9-10, 30-31, 51-52, 72-73, 93-94, and 114-115; dexamethasone orally or IV BID on days 15-21 and 78-84; and oral mercaptopurine on days 1-133.

Maintenance therapy: Patients receive vincristine sulfate IV on days 1 and 8; oral dexamethasone BID on days 1-7; oral methotrexate* on days 1, 8, 15, 22, 29, 36, 43, 50, 57, 64, 71, 78, 85, 92, 99, and 106; and oral mercaptopurine on days 1-112. Courses repeat every 16 weeks. Patients also receive IT methotrexate on days 1 and 85 (courses 1 and 4), day 57 (courses 2 and 5), or day 29 (courses 3 and 6). Patients then receive course 7 comprising vincristine sulfate IV on days 1 and 8; oral dexamethasone BID on days 1-7; oral methotrexate on days 1, 8, 15, 22, 29, 36, 43, 50, 57, and 64; and oral mercaptopurine on days 1-70. Treatment continues for 2½ years (timed from the date of diagnosis). [Note: *Patients do not receive oral methotrexate on the days that they receive IT methotrexate.]

Arm II (LR-C):

Consolidation therapy (4 weeks): Patients receive vincristine sulfate IV on day 1; oral mercaptopurine on days 1-28; and IT methotrexate on days 1, 8, and 15.

Interim maintenance I therapy (8 weeks): Patients receive vincristine sulfate IV and methotrexate IV over 2-15 minutes on days 1, 11, 21, 31, and 41 and IT methotrexate on day 31.

Delayed-intensification therapy (8 weeks): Patients receive dexamethasone orally or IV BID on days 1-7 and 15-21; vincristine sulfate IV and doxorubicin hydrochloride IV over 1-15 minutes on days 1, 8, and 15; pegaspargase IV over 1-2 hours on day 4; cyclophosphamide IV over 30-60 minutes on day 29; oral thioguanine on days 29-42; cytarabine IV over 15-30 minutes or SC on days 29-32 and 36-39; and IT methotrexate on days 1 and 29.

Interim maintenance II therapy (8 weeks): Patients receive vincristine sulfate IV and methotrexate IV over 2-15 minutes on days 1, 11, 21, 31, and 41 and IT methotrexate on days 1 and 31.

Maintenance therapy: Patients receive vincristine sulfate IV on day 1; oral dexamethasone BID on days 1-5; oral methotrexate on days 8, 15, 22, 29, 36, 43, 50, 57, 64, 71, and 78; oral mercaptopurine on days 1-84; and IT methotrexate on day 1. Courses repeat every 12 weeks for 2 years for girls and for 3 years for boys (timed from the start of interim maintenance I therapy).

During the Maintenance phase of therapy, health-related quality-of-life (HRQOL) measures, parent‘s perception of child‘s health vulnerability, fewer missed days of school/daycare by patients and work by parents, and peripheral neurological functioning may be compared in children receiving different vincristine sulfate/dexamethasone pulses frequencies to systematically assess the impact of treatment.

Blood samples may be collected periodically for research studies and patients may complete quality-of-life surveys periodically.

After completion of study treatment, patients are followed up periodically for 10 years.