Finishing up Delayed Intensification with a BANG

January had us heading into a Leukemia "milestone."  Annie began the second  phase of "Delayed Intensification" on January 9.  Like the name insinuates, the chemo drugs are pretty intense.  DI started with spinal tap, which has quickly become Annie's least favorite type of treatment.  We are often torn about when to break the news to her that a spinal tap is coming up - do you do it the morning of, the day before or start talking about it a few days prior.  We have tried them all unfortunately and there doesn't seem to be a good way.  She described the sleepy medicine to me recently like this:  "I don't like that sleepy medicine.  I see it going in [through her port/IV - it's white] and then it feels like something is crawling all through your body and I feel so weird."    Unfortunately she had to get 2 spinals in 2 weeks.  But she dealt with it...

To sum up the second part of DI  -
 - IV Cytoxan
- 2 Spinal Taps (with chemo)
- 8 days (in 4 day increments of Cytrabrine- administered by our home nurse Carol)
- 14 days of 6TG ( a chemotherapy pill)
- 2 IV doses of Vincristine
- 6 Erwinia shots

The issue with Cytoxan is that it can cause issues with your bladder and kidneys, so whenever Annie gets this drug she has to come home on fluids for at least 12 hours.

Annie carrying around her full IV bag of fluid and the pump that is giving her body continuous fluids overnight  - modern medicine is a good thing!

Annie didn't have too many side effects this time around.  The occasional vomiting and nausea is kind of expected these days and honestly Annie doesn't seem too affected by it.  Vincristine often causes some issues with the skin.  The skin on Annie's feet is continuously peeling off.  Luckily she doesn't pick at it too much.  Unfortunately a few toenails have succumbed to the Vincristine.  Hopefully they will start to grow back.  Speaking of growing back, all her hair was lost again. We are seeing small signs of new growth though.... Annie is excited to wear a "high ponytail" in the future.

Annie happy before sleepy medicine.  She's an expert in the exam room.

As Annie's blood counts were monitored throughout these weeks, her doctors and nurses knew her HGB (Hemoglobin) was trending down.  When it reached 7.1 on January 23 she was given a red blood transfusion (hopefully her last one!).  Annie actually felt much better after she got the additional blood products.  The only real issue  that day (and it was minor) was that we opened and closed the Valerie Center - hanging out there from 8:30 to 4:30.  Good thing we really like everyone there!

Getting some blood while playing with playdoh

Smack in the middle of her treatment Annie was very excited to register for Kindergarten!!  She's excited to ride the bus with Oliver and Lindsay and I must say it will be odd to have all 3 kids at the same school!

Class of 2031 (?!?!)

The last week of DI however we did run into some problems however.   On Tuesday January 30 Annie began to run a low fever.  By 9 am she was up to 102.  If you remember fevers and leukemia don't mix - and we have to take them very seriously.  She spent the day in isolation at the Valerie Center, under close observation.  The doctors started some blood cultures and checked her levels.  Because her ANC was still 750 (it was 1440 the day before), her doctors felt like she could go home that night.  We were due to return in the morning anyway for an Erwinia shot.  The same day Lindsay was sent home from school with the same symptoms....

Annie in isolation - what you can't see -  non-working TV (very boring for Mom)

The next day the fevers continued and her ANC continued to drop and was now under the 500 threshold at 380.  She remained in isolation at the Valerie Center.  The good news was that the cultures were not showing any bacterial growth; the bad news was that her nose swab came back positive for the flu.   With Lindsay at home with the same symptoms the entire family was  treated with Tamiflu.  The decision was then made to admit her for IV antibiotics and monitoring.  Annie was not happy about "living"in the hospital this time!   The combo of fevers and really not feeling well made both of us not thrilled about the decision, but we definitely agree better safe than sorry.  Up to room 306 we went.  We continued to be in "isolation" - which  meant Annie couldn't leave the room and anyone that came in - even for 2 minutes - had to gear up in plastic blue robes, masks and gloves.   Her ANC continued to drop during our stay, but she felt significantly better.   Her fevers disappeared and there was no bacterial growth on any of her cultures.  We were discharged on Friday February 6,  but sent home with her port accessed  so that we could administer  IV antibiotics every 8 hours.

Annie reminded me - "we need a picture outside the door"  

More modern medicine - this is a ball of antibiotics that self-infuses once hooked up to the IV over about 25 minutes

We ended up missing a lot of fun activities that weekend  because she still had extremely low counts (the lowest they have been since our first month in the hospital) and was very immunocompromised.  Annie did seem to have a change of luck though and won one quarter in one of the Superbowl pools!!

Happy with the $125 win - "I'm going to Toys R Us" she proclaimed!

The next phase, "Maintenance", was due to start February 6th.  Because her counts were still so low, the start has been delayed and is scheduled for February 13.  Her counts are still under 500 but they are very slowly creeping up.  Her IV antibiotics were stopped on Wednesday the 8th.   De-accessed for the first time in a week, Annie took a very long bubble bath and continues to be in good spirits.  We will keep her secluded until her counts come up to a safe level, esp. since it seems everyone has one illness or another these days.

When we start maintenance we'll give an update as to what that means.... fingers crossed we start Monday.  Although it starts with sleepy medicine.... we probably won't tell Annie that yet.