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

We're done with Interim Maintenance !

Woo hoo - we've finished interim maintenance!  I'm not really sure why it is called "interim maintenance" so I did what any person does when searching for answers; I googled it.  Here is the gist of what I came up with.

. Interim Maintenance Phase

As with the previous phase, interim maintenance aims to destroy any leukemic cells left in your child’s marrow or blood. This phase lasts about 8 weeks.
Your child may take the following medicines:

• vincristine (VCR), IV
• methotrexate (MTX), IV and IT
• PEG-asparaginase (ASP), IM
• mercaptopurine ( MP), orally

** NOTE - ANNIE did not get PEG for this Phase - I guess some kids do.  Remember this is the drug she's allergic too and she gets a replacement drug via a shot to the thigh.  Either way, she went 8 weeks without it luckily.

In my own words, IM is just another dose of chemo.  The difference with this phase is that the chemo is not as frequent.  So although she is taking a chemo pill orally at home most nights (6 MP), she is only getting IV chemo every other week.  The chemo is no joke though.  As I said in the last blog she's getting a big bag of methotrexate administered over 24 hours each time she is in the hospital.  Then we have to wait for her body to excrete it.  So the shortest amount of time you would be in the hospital is 72 hours from the when they START the MTX IV.  Luckily Annie cleared in time all four times (although her third round she was a little slow...)   IM started on October 6 and ended on November 19.  What happens while we are at the hospital?  Peeing.  A lot of it.  Annie is getting so much fluid with the chemo that she is wheeling that IV pole into the bathroom about every 60 minutes (she's actually pretty good at wheeling the IV pole around now).  And it is not just peeing and flushing.  We have to collect the pee every trip to the bathroom and it has to be measured and tested.  So there was pretty much always some form of collected pee in the bathroom...

So to sum up IM for Annie....

*  2 Spinals (with sleepy medicine and chemo)

*  4 doses of Vincristine (which has temporarily made her walk a little funny but we're told she will         get back to normal)

*  4 giant doses of 24 hour methotrexate (that big yellow bag).

* 12 nights at Goryeb (we've now been in most rooms.... 301, 305, 308, 309, 310.  We can actually even add 316 although that was when we were there 2 nights with Oliver and his broken wrist...)

*  Multiple doses of zofran (anti-nausea med) and leucovorin (recovery drug)

Special shout out to all the nurses at the Valerie Center - Trish,  Gina, Ann & Whitney and those on the 3rd floor who we are getting to know well too!  Karen, Rebecca (**my former student from PHS**), Laura, Tina, Tony.... just to name a few (plus the Child Life from the 3rd floor - Kristen and Jess ).  I'm sure we're forgetting some.  They are all super nice to Annie even when she's "not in the mood."  If you ever have to stay there, you're in good hands.

Annie and Trish heading to room 309 with the final big bag of MTX

Having fun with the Clown/Magician (she was scared of clowns in July, but not so much now - go figure!)

During our last stay at the hospital Annie had a EKG and an Echocardiogram.  Both in preparation for the next phase of treatment called Delayed Intensification.  It seems DI  is a combo of induction (the first phase) and consolidation (the second phase).  In layman's terms - it's A LOT of chemo and a lot of trips to the Valerie Center.

Some hugs for the therapy dogs.  Maybe their good behavior can rub off on Bear

Just some info from the last few weeks though.....

Annie was lucky enough to have a "wish" granted by the Daniel Galorenzo Foundation.  

https://www.facebook.com/The-Daniel-Galorenzo-Foundation-273584696897/

The mission of the Danny G. foundation is "to raise money to help children with life threatening illnesses, giving them back what their illnesses have taken away.... hope, laughter and dignity."

The foundation purchased an amazing playset for our family.  If you happen to be considering a donation to charitable organization this season, please consider the Danny G. Foundation.  I continue to be in awe of people who have turned grief into something so positive, so selfless, so helpful for so many people.

Needless to say, everyone in the family (including the dog) has been enjoying the playground (look closely -he's in there)

Thank you Danny G. Foundation! Yes, Bear climbs the ladder to the top!

I feel almost weird writing this because everyone I know has been so generous, but if you are looking on how to help the Valerie Center you can donate toys for the Holiday Party.  There is a specific list but I was told they would accept anything that is new and unopened.

https://www.myregistry.com/organization/Valerie-Center-Morristown-NJ/1221389

Lastly, this summer I joined the Team In Training program as a way to fundraise for the Leukemia & Lymphoma Society, and get some partners to run with.  Thanks for everyone who donated!  It's a great organization and I have met a lot of great people and heard so many inspirational stories. Anyone want to run with us?

www.teamintraining.org

We will update more in a few weeks as we head into the holiday season ..... and into  Delayed Intensification....

There are some strange people in Annie's room!

There's a lot of catching up to do!

So Annie successfully completed the second phase of treatment, CONSOLIDATION, in September. 

During that process she had 12 erwinia shots, 4 lumbar punctures a.k.a. spinals (with sleepy medicine), 2 red blood transfusions, 1 platelet transfusion, 28 days of mercaptopurine chemo pills, 3 other types of IV chemo given over numerous days including the weekend, lots of tape (one of her biggest complaints!), press and seal and so many Valerie Center visits it's hard to keep track of.

Despite the intensity though, Annie  was generally happy, riding her bike, swimming (with no floaties - in the deep end) and playing.  In fact, aside from occasional nausea and fatigue,  you wouldn't really notice much wrong with her (aside from the obvious -hair - which incidentally is a thin layer of peach fuzz now).

Annie celebrated most her 5th birthday in the Valerie Center, playing with Kelly (the Child Life Specialist) and Oliver and Tich.  The center got her a huge ice cream cake  (and gifts) which was shared with everyone there that day!

Kelly (Child Life Specialist ) playing SLAMWICH with the kids at the Valerie Center

Happy 5th Birthday Annie

Her counts went pretty low (under 200)  at the end of September which caused a delay in the next phase called "Interim Maintenance."  Delayed initially from counts one week and then delayed another chunk of time due to a very strange rash (later diagnosed as Gianotti-Crosti) and a need for a red blood transfusion, Annie didn't start her first of four inpatient IM stays until October 6.  

During our inpatient treatments, Annie gets a spinal the day of admittance, a dose of Vincristine (a chemo drug) and a IV drip of Methotrexate that runs over 24 hours.  The goal is to have her excrete the drug in a certain amount of time. The levels of methotrexate are tested at 24 hours, 42 hours and 48 hours.  If she is under the required level at each of those timeframes she gets to leave after 72 hours of fluids (timed from after the start of the drug).  The effects of the methotrexate can be rough, so they give her Leucovorin ( a drug used as an antidote to effects of certain chemotherapy drugs, such as methotrexate) every 6 hours.  Annie hasn't had too many adverse effects.  Her skin actually bares the brunt of it and she has gotten some mouth sores, but otherwise has tolerated the drug fairly well.

Annie and "Ella" passing the time during an inpatient stay

big bag of methotrexate

Today we completed our 3rd round (of 4) inpatient stays.  I would say the novelty has certainly worn off about our days "living" at the hospital, but with only 1 more to go we can deal with it!  We also get a week off - no needed visits to the Valerie Center!  Perfect timing for election week/ Teachers Convention (teachers you know what that means!).  Still can't believe that it is November ....time flies.

August 21.....


Consolidation has been going well.  So far, we have had no delays in treatment.  Delays will happen if Annie's blood work gets to compromised from the chemo drugs she takes. However, there is a drug called peg asparaginase (no that's not a typo) - I would love to know who makes up the names of these drugs - that many patients are allergic to.  It is part of the consolidation "diet". 

crafts at Valerie Center

 

Annie's first dose came a week ago this past Friday (8/12).  As a precaution, this drug is given under the very watchful eyes of the staff at the Valerie Center www.thevaleriefund.org,  dispensed via IV over a two hour period.  Unfortunately, after 20 minutes, Annie sat up in bed and said she felt itchy.  After a few moments of heightened observation, she broke out in hives and got panicked.  The med was quickly stopped and she was given Benadryl and hydrocortisone.  Her symptoms subsided, but because of the reaction, she now had to stay at the hospital for another six hours, so the staff could observe her after the first dose of Benadryl wore off.  She was able to go home, and took Benadryl for the next 24 hours.

waking after sleepy medicine

The big stinker is, she needs to take a drug called erwinia asparaginase.  sounds like almost the same thing.  I guess it is, but this needs to be taken as a series of shots administered in the thigh of the patient.  She needs 24 doses.  Every Monday, Wednesday, Friday.  Makes the trip to the hospital a bit more frequent and a lot more traumatic.  The first couple of visits were pretty awful.  On Friday, they administered it while she was under - remember, Fridays is lumbar punctures (aka spinal taps), so she is always put under on Fridays.  She usually hates the anesthesia, but it wasn't so bad this time.  As she was just coming to on Friday, she asked Fern whether they had given her the shot - "yes", said Fern, and "YES!!", said Annie.

crafts with Kelly (child life specialist)

I had the good fortune of meeting Joanne, the Educational Consultant at the Valerie Center.  She told me about the awesome things they do to help kids keep up with school while they're in treatment.  One of them is with the use of robots called "VGo".  The robot is placed in the kid's classroom and gets turned on when school starts.  It's mobile, so can move around and has a Facetime-like format that allows the kid to watch and listen to the teacher thru the iPad and a monitor on top of the robot shows the kid's face.  They can even signal the teacher to answer or ask questions.  So I was bragging away about it, and my friend Kenny McPeek told me that he serves on the board of the Daniel Galorenzo Foundation, which donated one of the 12 VGo's that the Valerie Center uses.  "Danny G" is a boy who passed away in 2002 of an aneurism following his wrestling match.  Another awesome and inspiring story.  https://www.facebook.com/The-Daniel-Galorenzo-Foundation-273584696897/about/?entry_point=page_nav_about_item&tab=page_info


The blood drive was a great success!!!!  So many of Annie's Army came to donate - and many gave in far away places.  Her Uncle Eric donated in Arizona!!  Her Auntie Dep donated in England!!  It was great to see all of the support lining up - especially the ones who are afraid of needles and blood!!  Faint-friendly Aunt Lori donated - and didn't faint!!  And cousin Scott, not a fan of blood, got thru it as well!!  Uncle Jared was said to be "racing" someone next to him to see who could get their pint out the fastest.  Some would-be donors had to be escorted off of the premises after they objected to being rejected (not really, but they were very disappointed and it was so great that they tried to give).  Still waiting for the final tally of pints of blood collected - stay tuned.  For those of you who promised to be at the next drive, I WILL REMEMBER YOU:)  Next blood drive date TBA soon.

drop by for a pint:)

As a special pre-birthday trip, Fern arranged a trip to the American Girl Store in NYC!!  Cousin Chris' Aunt Sharon, who works at the store, kindly arranged a customized visit for Annie to go to the store and avoid too much exposure to germs, etc.  It was a very VIP-type trip, where Aunt Sharon and Tich served as personal shoppers, gathering various items for Annie to view in a special room set up for her prior to her arrival.  She came home with her first doll and many accessories.  Unfortunately, the trip was cut short, because she was a little uneasy about being away from home and got very tired from all the excitement.  Special thanks to Annie's invited guest, Cousin Cherie, who accompanied everyone on the trip and kept Annie laughing all the way there, all the way home, and for hours after.  She has quite the gift, that cousin of mine.  Love you, cousin - thanks again:)

the big trip!!!

Swimming continues to be a frequent activity, and Annie has easily surpassed her siblings in terms of skill and courage at her age.  She jumps into the deep end of the pool, swims above and below the water and loves swimming down and collecting things thrown to the bottom.  Cousin, Ava, came on Saturday to swim with her and. . . .to bring her her SECOND American Girl doll.  Thanks Ava!!! 


The swimming isn't just in the pool - Annie has been watching the Olympics and loves watching the swimming competitions.  We watched Katie Ledecky blow away the field and the World Record in the 800 meter freestyle.  After the race ended, Annie said, "daddy, I want Katie to be in our family".  Front runner. . . .


We have a new pet - a betta fish that Annie named "Goldie".  Real original. . . . .  Thanks to the Thieleman family:)

someone get that Elsa a snorkel!!

Annie's food obsessions have gone from McDonalds, to Chipotle, to cucumbers (with salt), to turkey.  After four weeks, Annie was unable to eat the entire turkey breast that Uncle Jim and Aunt Moe have made for her each weekend.  Thankfully, Annie's dad can put some turkey away when she falters.  We'll see where here pregnant-like appetite takes her next.


Stay tuned. . . .