Maintenance - Cycle 2 has began!

On May 8 we started Cycle 2 of Maintenance!   Time is flying and spring is here, finally.

Time is going by so quickly when I think back at the last three months it is almost like a blur.  To see the progression in pictures is pretty cool though.

So Annie started Maintenance on Feb 13 with treatment at the Valerie Center.  We have only had to return to the Valerie Center technically once a month since then,  although we snuck in an extra visit to have her terrible cough checked out.  Annie spent the morning at the clinic on March 13, April 10 and May 8.  That is a far cry from the 3 times a week we were averaging when she was getting the chemo injections.

Annie and Whitney at the April 10th visit

The March 13 required "sleepy medicine" for  methotrexate in the spinal fluid (at the center this is referred to as a "lumbar puncture/LP"), plus IV Vincristine.  The good news was that on April 10 we did not need to have the LP,  so no sleepy medicine!  No fasting the night before, no need to get there at 8:30 to be hooked up to fluid.  Annie was thrilled as the sleepy medicine still remains the most difficult for her.

We returned to the Valerie Center  this week after what seemed like a very long break.  Annie was very happy to see everyone- Gina, Maureen, Trish & Whitney......
She was excited to check on the progress of nurse Whitney's baby and even got to feel him move! She was very upset about the sleep medicine again, but when she woke up from anesthesia she was happy.  Maybe we're turning a corner.

Annie and Maureen after treatment on May 8

     So throughout maintenance the goal is to keep Annie's white blood count (mainly her ANC) at a safe but still somewhat suppressed level - to prevent leukemia cells from growing.  Her ANC has been hovering around 2400 (which is great for a healthy person) but too high for 5 year old in treatment for ALL.  So for Cycle 2 the doctors have increased all her chemotherapy oral medications on purpose in hopes to drop her ANC.   The meds also have to be adjusted because of her nearly 5 pound weight gain since she started maintenance.  This increase in meds started on May 8.  She's been a little crankier this week but we think it is her body readjusting to the new dose (and it is a steroid week).

     Annie takes Mercaptopurine daily (6MP), a Prednisone pulse 5 days every month, Methotrexate once a week and Bactrim 3 days a week.  I still am in search of a way to remember all these doses and medications.  To date there is no pill container that is sold at CVS or Walgreens that can accommodate ... at least not easily.  I have gotten pretty good at using the alarm, reminders and shared calendars in my iphone though! (Justin was happy - that is until I used my newly honed skill to set alarms to remind him about the recycling)

     The biggest issue so far has been trying to figure out the best time of day to give the 6 MP pill because of the food restrictions involved (you can't eat 2 hours before or 1 hour after).  Annie  has not needed her anti-nausea meds that much and has only had leg/muscle/bone (who knows what it is exactly) pain a few times.   Lastly, her hair is really looking good!  My friend and I joked that she looks a little like Sinead O'Connor.   So as the weeks go by we are slowly creeping closer to July 2018, when she will be officially done with her treatment (fingers crossed).

What else has happened....

     Annie went back to preschool part time.  She already has "best friends.''  She's officially playing soccer!  And she's back to swimming, both with her class on Mondays and then picking up an additional class on Fridays.   She's pretty tired these days (aren't we all?).  We're having fun enjoying everyone's activities  (Oliver - soccer, LAX and baseball, Lindsay - softball and dance) but I think we are all looking forward to the lazy days of summer.  We kind of "skipped" last summer.... so this summer we think is going to be extra special.

Annie on her 2nd day back at school with Miss Brinley (she was too nervous on the first day for a picture)

Annie the soccer player

Annie the swimmer

     A former Valerie Center patient, now an adult living a regular cancer-free life, described his leukemia as a "twisted blessing."  To me this is the perfect way to explain how I feel.
Look at all the wonderful things that we have seen in a mere 11 months, right within the community that we live.  "We don't heal in isolation, but in community."  It's been nearly a year since Annie's diagnosis and I can say that without the support of our community I don't think it would have been as easy.  Not a day goes by where someone doesn't ask me about Annie.  Let me tell everyone, again, (and brag a little) about the community we live in.  What a wonderful place....

Project Amazing Grace - www.projectamazinggraceml.com
This wonderful organization extends "supportive wings" to community members affected by cancer.  What a beautiful use of imagery to explain what they do.   Thank you to PAG for supporting our family with your gentle, caring, wings.

Thank you PAG for all the emoji goodies!

100 Mile for Lent -
Every year a group of BT moms gets together to challenge each other to achieve this fitness goal (running, walking, biking 100 miles during Lent).   This year these amazing ladies did it on honor of Annie!  It was so fun on Good Friday to run from Birchwood Lane to Johnnies.... everyone wearing the orange shirts that Johnnie's Tavern donated!  Thank you Johnnies!

Annie's Army enjoying an adult beverage (or 2) at Johnnies Tavern....

If that was not humbling enough, the Easter Bunny delivers a GINORMOUS basket of easter goodies, gift cards, toys, crafts, etc... to Annie and our family.  Everyone has done so much for us already - and now this!  THANK you to everyone who participated and to Kristin Groeneveld, Sandy Trimble and Cindy Westenberger for organizing... these ladies are rock stars.   Seriously who wouldn't want to share a community with them?

Thank you Easter Bunny for the giant basket!

Belle Visits Annie and her friends!  - Thanks for Julie Cilley-Bush and her daughter Haley for arranging a special "Be Our Guest tea party"  for Annie and her friends -  just because.   The Party Fairy, LLC  donated the services of one LEGIT Belle (Lauren Staub).  Seriously, it was Disney quality.   My neighbor asked "Did I see Belle walking down your driveway the other day?"   Yes!  Even Oliver said "who was that singing?  She was really good."  (for him to comment on anything princess you  know it must be pretty amazing).  Not sure we can top this for her birthday this summer!

Three Beauties....

Make a Wish - www.wish.org (NJ Chapter)
I kind of knew about this organization for a long time.... but i never knew details about it .  Well, it's the real deal.  How often do you get GIFTED a Disney Cruise?  Wish granters came to our house (bearing a Lego Friends set no less!) and talked to Annie about what she would like.  Annie chose a (much needed) vacation and the wish granters worked this out for our family.   The NJ Chapter granted over 400 wishes last year!

Team in Training with the Leukemia & Lymphoma Society.   www.teamintraining.org
Recently Annie (hopefully this fame doesn't go to her head) was chosen to be the honored hero for the fall.  Hopefully her story can motivate those involved to achieve their own personal goals and to raise money to help find a cure.   Thank you to everyone who donated and who came out to our recent fundraiser at Chipotle (we raised over $230 for the cause!).

We just keep thinking, even when it is a bad day,  "you took the sourest lemon that life has to offer and turned it into something resembling lemonade."  It truly has been a twisted blessing.  (and I love This Is Us so I had to throw in a reference)

Sorry if this is newsletter-like.  This blog is hopefully going to be a way for Annie to remember and learn about this time of her life and all the wonderful things that happened!

June 23 will be the one year anniversary of her diagnosis - we will check back in then.....

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.

Welcoming 2017 with Open Arms!

Happy New Year!! We are welcoming the new year with open arms, hopeful that 2017 will be a much better year for us.  Not that 2016 was all bad... but at this point it's hard to remember much about this year other than cancer and broken bones.

So Annie has completed the first 4 weeks of "Delayed Intensification."    We started this phase on December 7 with a Spinal Tap (the spinal taps include treating the spinal fluid with chemotherapy - methotrexate - and testing the fluid for cancer cells).   After a fairly long break without any of the intense IV chemo treatment, Annie was less than thrilled on this first day.  In fact, she was nearly having an anxiety attack over the sleepy medicine, crying when she saw the white liquid getting pushed into her IV.

Requested snack after the sleepy medicine - Sour Patch Kids

December 7 ended with a dose of Vincristine and Doxorubicin.  That night at home we started her 7 day course of steroids as well (Decadron).  She repeated the Vincristine and Doxorubicin on day 7 and 14, and took the steroids for 14 days total (with a 7 day break in the middle).   Delayed Intensification also brought back the dreaded Erwinia shots (she will need 12 more total).  Annie was so anxious, sad and upset about her first shot that one of the nurses suggested a sedative.   The good news is we got a prescription for said sedative  and it actually has really helped.  We were happy to report that Annie did not cry - at all - for shots #4 and #5!  She was so proud of herself, reporting to everyone that night that she "squeezes her toes and shuts her eyes" and doesn't need to cry!

Her attitude AFTER the shot is totally different...

So yay for Ativan.   Annie actually didn't get her #6 shot because there was an Erwinia shortage?  We are assured that the protocol is not to make up missed doses, so Annie lucks out in a way and will only get 11 shots for DI...5 down, 6 more to go!

So how has she been?  Overall I think we can say she has been a little tired, a little irritable, and a lot hungry.  She has not been on steroids since her initial diagnoses in June so we almost forgot about the food obsession.  What does she fancy this time around? Pasta.  Taylor Ham.  Hot dogs.  Boiled eggs. The eggs seem to be the biggest obsession of all.  She got turned onto them when I had to make deviled eggs for work and has not stopped since.  She eats between 6-12 hard boiled eggs a day, and when she's not eating them she's talking about them (when she can eat them again, who is going to Kings to buy them, how many are left...).  Don't fret about her cholesterol though, she doesn't eat the yolks!

just a little snack...

At her last Valerie Center visit (on Dec 28) she had officially gained 4 pounds in 3 weeks.  Not that bad considering her parents probably gained more than that between Christmas Eve and New Years Day!

The steroids caused some severe muscle pain again too - just like when she was first diagnosed.  She had a few days of terrible back pain and then a few more of leg pain.  Luckily she got through it with heat packs and an all natural muscle rub (thanks Cheri and Lisa!). Her hair is falling out again, but she seems ok with it, and so are we.  Even when strangers sometimes refer to her as a boy.  I thought she'd be upset but she just said "they must be confused because of my hair."  And that was that.

Aside from Christmas and New Years, December was filled with other memorable events as well...

Of course it started with Annie's very own "Parade" of 54 fire trucks.... If you haven't heard about it please read    http://www.dailyrecord.com/story/news/2016/12/05/morris-firefighters-respond-force-sick-girl/94995774/
We still feel overwhelmed when we think about it, and Annie likes to say "I'm  famous."  (The receptionist at Goryeb actually did recognize her from the article as well as one of the valets).  This amazing event was preceded by our friends from the community decorating the yard with a winter wonderland of snowmen and lights.  True holiday spirit!

Boonton Township Volunteer Firefighters rock!

We had lots of parties including our first Valerie Center holiday party.  Even though Annie was very tired and irritable from the steroids, she was still happy to go.  We were amazed to learn that every person there "working" was volunteering their time... amazing.

Snowman face paint at the Valerie Center party

We spent our week off after Christmas relaxing, organizing the house, going to the movies and just trying to regroup.  You can often hear someone here singing "I'm Still Standing...."  (if you saw Sing, you'll know why).

The next part of DI starts Wednesday (if her counts are high enough - she has to have an ANC of at least 750, platelets 75,000) with a spinal and a different cocktail of chemo drugs.

So we plug away, taking it a week at a time.  It's amazing that we are approaching a pretty big milestone in ALL treatment.  Please keep your positive thoughts and good vibes coming so we get through this next phase without any complications.  Happy Holidays and Happy New Year!

Thank you to Troop 5617 (Lindsay's troop) - They completed their Bronze Award by collecting donations (well over 100 items) for the Valerie Center