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!