Day 1 of Interim Maintenance

Thursday, March 15th was Day 1 of Interim Maintenance.  It took Sadie 3 weeks to make counts, but that was expected.  Day one of this phase was important because it means 2 years from that day, Sadie will finish her chemotherapy.  No matter how many delays are inbetween treatments. 

Monday the 12th, her ANC was 500. By Wednesday, it was 1200!   So Thursday we began. We didn't have much notice, so it was a scramble to get things in order and make sure Evan and Andrew were cared for, but Thursday evening, Grandma Judy flew in and we could all breathe a sigh of relief. 

(Dave took this video on Day two at PEC.  It makes me smile.)

What I know about this phase: 

• It involves four, 3-4 day hospital stays
• We'll be admitted to Lucile Packard, then transported by ambulance (no sirens or anything) to another location where she'll stay and be monitored.
• She'll be given a high dose of Methotrexate.
• She'll be on fluids the entire time to flush it out.  They will monitor her urine to keep her Ph between 7 and 8, which is optimal for flushing Methotrexate out.  (We put cotton balls in her diapers and they check the Ph from those cotton balls every time we change it.)
• The Methotrexate takes 24 hours to go in.
• They check the level in her blood at hour 24, 42 and 48.  At hour 48, if the level is below 0.1, we can go home.

What I've learned about this phase:

• The PEC (Packard at El Camino) isn't so bad!  In fact, it's kind of fun!  They have an awesome play room, and an outside patio.  Sadie doesn't have to wear a mask, so we have more freedom to roam around.  The nurses are great, and it's much quieter and more relaxed there.
• The side effects are awful!  We were discharged on Sunday and Sadie was feeling great.  Then on Monday, mouth sores started showing up, then sores on her bum, then nausea.  This week has been rough.  It's oxycodine and zofran every 6 hours just so she'll eat and drink.  But she still doesn't have much of an appetite.  I'm struggling just to get fluids in her so she doesn't get dehydrated.   She's tired and wants to be held all the time.  The sores create a mucusy saliva in her mouth and throat.  It's the worst when she crys.  She gags on the mucus and throws it up. 
• As if that weren't cruel enough, Monday thru Thursday we have to crush a pill (Mercaptopruine) and give it to her.  She crys when anything goes down her throat so this is a miserable task.  And it's made worse by knowing it's poison.  More chemo is only going to make her feel worse, not better. 

All that being said, I think today is a turning point.  I think she's on the mend.  She doesn't gag anymore when she crys so I think the mucus is going away.  And she has more of an appetite. 

To sum it up:  4 days in the hospital, 4 days of awful side effects, then hopefully a week of recovery before we have to go back in.

(Note to self:  Sadie was also given an IT Methotrexate and Vincristine.  So she has a hoarse voice and I think her feet are getting floppy again.  She stumbles a lot.)