Made it to Maintenance...

In the "leukemia world" getting to maintenance is a milestone of sorts.  Lots of people ask us "oh so she's done now?" or "it's over now?"
So, in short - no - she is not even half way through her treatment.  So let me explain what maintenance is about.

From WebMD:

• Maintenance therapy also prevents any remaining leukemia cells from growing. This may be done using lower doses of chemotherapy than those used during induction or consolidation. Chemotherapy is given with pills and once-a-month intravenous (IV) treatment. Maintenance is often continued for up to 3 years, but during this time, most people are able to go back to being as active as they were before beginning treatment.

Annie will be in "Maintenance" until August 2018 (barring any complications).  

Maintenance is broken up in to cycles that are made up of three 28 day phases.   Her protocol includes the following:

• IV Vincristine once a month
• Spinal tap with Methotrexate in the spinal fluid 2 out of the 3 28 day phases per cycle.
• 6 MP ( oral chemo drug )  every night  
• A pulse of prednisone 5 days every month
• Methotrexate once a week (except on the weeks of the spinal)
• Bactrim  (an antibiotic) Friday, Saturday and Sunday   

So, unfortunately she is not done.  She is still taking a lot of medication and chemotherapy drugs.  It's just that most of them are given at home, outpatient.  And we are told that her hair will grow back.  And we are encouraged to return to normal activities.  Shannon, one of the nurses told me, "Annie's hair will grow back and no one will really even know that she is in treatment for cancer." 

Start of Maintenance (with a toy from the treasure box)

We have to follow the same protocol though with germs  (as much as we can when you are 'resuming normal activities') .  That means the usual, lots of hand washing (my hands are literally so dry they get 'caught' on my clothes!), staying away from anyone who is sick, has a fever, diarrhea or any other illness.   Annie will be, compared to the average person, immunocompromised on purpose for the next 18 months.  This is done to keep the leukemia cells from growing or returning.  Seems, in a way, counterintuitive.   The same risk is involved if she has a fever as well.  So I won't be taking that travel thermometer out of my purse just yet.  

She started maintenance officially on February 13, 2017.  She had to get sleepy medicine - it didn't go over well.   I actually think if I wasn't holding her tightly she would have bolted out of there.   But afterwards she was ok.  The whole start of maintenance was in a way kind of anti-climatic.  It was strange to leave the Valerie Center knowing we wouldn't be back for two weeks.  Annie actually got very sad when we were leaving (and was still sad a few days later) because she was going to miss Whitney (one of the nurses) "so so much" (her words). It's strange for all of us to be this disconnected in a way from the clinic.  We are getting used to it though.

Annie sending her own bloodwork out to the lab through a machine similar to that at the bank....kind of cool, right?

So in the near future we are thinking of sending her back to preschool, at least part time.  She's signed up to play soccer this spring.  We have to check out swimming lesson times at the YMCA.  She's set to start kindergarten in September.... so our lives and our "normal" is evolving again.  

Annie still under anesthesia.  She randomly wanted to bring the "Guadalupe" blanket from home that day - she's never wanted to before.  Backstory:  The Bush family feels that Our Lady of Guadalupe is a representation of Grandma (Ann) Bush, Annie's namesake, who passed away.  If you read the story, it says that Our Lady of Guadalupe said "Do not be troubled or weighed down with grief, am I not here?"  If that is not fitting for this situation, not sure what it.  We know you're here GG!

Lastly, just another example of our community.  Annie/Daddy lunches are often at one of our fav's - Top of the Park.  Recently, Joe and Rachel invited Annie to come back and make her own pizza.  She was very excited and everyone enjoyed eating it - especially Uncle Jimmy!   Great food, great people - Top of the Park, Boonton.

   So we continue on this journey.  We are blessed that Annie has not had that many complications.  We have met so many friends through this journey, some which have not had it easy.  Childhood cancer is a very scary and unpredictable thing.  We will continue to support organizations that work to improve treatment and hopefully  find a cure for this horrible disease.  As you know I am always fundraising for the Leukemia and Lymphoma Society through Team in Training (I've already raised over $4,000).  We are also currently fundraising for the Valerie Center (amazing organization).  They have an annual walk every year in Verona Park.  Please check out our team Annie's Army Team Annie's Army
We would love to have you join us that day!  

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.