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. . . .

Annie update from Stacy - (as of 8/7) ….

So for those that do not know, the good news was that Annie went into remission after phase 1, called INDUCTION, on day 29 of treatment.  It was a great relief that we got those results.  It was hard to understand though because if she's in remission, why do we continue with such intense (more intense than phase one treatment).  One article I read said a typical "ALL" patient probably has a billion cancer cells at diagnosis.  And although millions have been killed, there are still probably a million cancer cells lingering around in the body somewhere.  For leukemia patients the cancer can hide in two places; the bone marrow and the spinal fluid (i.e. the Central Nervous System).

So Annie started phase 2, called Consolidation, on July 29.  Consolidation basically means consolidate the leukemia and prevent it from spreading, esp to the CNS.   Consolidation is technically 56 days but can be delayed as the bone marrow may need to recover before more treatment is given.  Preventing the spread to CNS is key and that is why this phase includes spinal taps once a week for four weeks.  Just so you know, the spinal procedure in and of itself is not a huge deal… but the no eating and drinking from midnight the night before, the wait for several hours in the morning for the procedure to be done,  and the anesthia (a.k.a. “sleepy medicine) are the problems.  Annie already knows when we say she can’t eat in the morning that she’s getting sleepy medicine.  In the words of a 4 year old “I don’t like the sleepy medicine – it’s so weird and makes me dizzy.” 

waiting for sleepy medicine to wear off :(

Without a huge amount of detail (because keeping the drug names straight  is even hard for us), Annie receives chemotherapy medication in her spinal fluid and then a combination of IV chemotheraphy drugs 4 days a week (Friday thru Monday).  In addition, she takes a chemotheraphy drug by pill very night for the first 14 days.  You can only imagine what it's like to get a 4 year old to swallow a pill - not so easy.  Additionally she takes antinausea medication (Zofran) around the clock on the chemo days and a separate antibiotic 2x a day on the weekends.  The chemo drugs change each week.  Last week she had one that required IV fluids for 24 hours after it was administered.  So a nurse  (Carol) comes to our house with a bag of IV Fluids that annie keeps in a “backpack” and carted around with her at night . 

Since her chemo treatments take place over the weekend, we have the drugs delivered to the house on Fridays.  Pretty weird storing chemo in your fridge next to the half and half.  Keep that in mind if you visit an we offer you coffee. . . .

careful what you grab. . . .

Next week she gets a drug that has to be monitored for allergic reactions.  Etc etc.

So this 56 day phase is pretty intense.

So far Annie has been great.  She’s running around laughing, fighting with  Liv and Tich, eating and swimming (when she doesn’t have her IV accessed).  Luckily (or because of the Zofran) she has not had any nausea from the drugs either. 

shark in the pool!!

She does sometimes get a little down.  Last night before going to bed, she said, crying, “why do I have to keep going to the hospital? That hospital is so STUPID.”  She was just feeling a little sad all morning at the hospital.  And, at last, the inevitable happened - she looked down and saw as they "accessed" her port - that's when they stick the needle into the small device just under the skin on her upper left chest.  Although she is numb and can’t feel it – the “pointy thing” scares the crap out of her.  So she now adds that to the sleepy medicine in her night-before stress.  She told me tonight (Friday)  - “mom I am a little bit worried thinking about the tape and taking out the pointy thing when we go back to the hospital.”  And she says “I’m worried about taking the pill, it’s so hard.”

shark resting, disguised as little girl.

So we carry on with her through this time and do our best to keep her happy and funny.  Tonight, she was dancing to the music at the Olympic Opening ceremonies.  And, she keeps growing up while we take on this challenge.  Yesterday she was jumping into the deep end of our pool with no "floaty".   Earlier this week, she was trying to create shopkins with playdoh (a.la AMY JO). . . . .

The Blood Drive is scheduled!!  And because of the overwhelming support of all of you, they opened more dates and times.  Today at the Valerie Center there were several kids there getting Red Blood and platelet transfusions.  I would say more than  ½ the kids there were at the center just for that reason.  Just like we like to do some things before we go on vacation like get the house in order or whatever, cancer kids come to get some blood so that they don’t have an issue on their precious week away.  Like them, Annie will need more transfusions as she navigates through her treatment Your blood donations help so much - thank you!!!  If anyone has questions, you can:

• call Atlantic Health Blood Services:  (973) 971-7444
• visit http://nybloodcenter.org/donate-blood/become-donor/can-i-donate-blood/
• call Justin: 973 809-6891

Some of you have told us that you'd love to donate but can't for one of a host of reasons (there are lots of exclusions now).  Perhaps, you can recruit someone to donate in your place??  There are still spots left and we want to max out the day, so please do what you can to help:)

And more thanks.  Thank and you seem like words we are saying a lot lately.  I hope that they are not losing their authenticity and meaning.  I worry sometimes that I haven’t thanked everyone I should or that people don’t know how much we have appreated everything they have done for our family up to this point.  We are now getting A Blue Apron delivery courtesy of all our friends at Par High.  Lindsay is our budding chef (inspired by Chopped Junior and Kids Baking Championship) and has been helping to cook the meals (which BTW plug for Blue Apron has been very good, and although I wont say simple, have been pretty straightforward in preparation).

yum!

Justin Oliver and Lindsay enjoyed some time this week at Crystal Springs for an already planned State Farm trip.  They did zip-lining and went to Action Park with cousins Trent, Aidan and Olivia. 

In the next few weeks as Annie continues the intense chemotherapy her blood counts will likely drop but hopefully she doesn’t get sick and recovers quickly.  Please continue all your prayers and positive thoughts and “good vibes.” 

could be your blood??

Wednesday 8/10 update - red blood transfusion today (transfusion #5) - was dropping as a result of the latest doses of chemo.  good news is ANC was over 5000, and platelets good, too!!!  Super numbers, but chemo will likely beat them up again.  Annie did great with the hospital visit and Oliver and Tich hung with her the whole time - about 5 hour trip, so kudos to them:)

Annies Big Blood Drive!!!!

 

 

Hello FriendsJ So many of our wonderful friends and family have expressed a desire to help Annie and our family as we battle leukemia with her.  We are humbly asking that you help Annie and others battling leukemia and cancer by scheduling a platelet or blood donation in her honor.   Thankfully, Annie isn't battling leukemia alone, because you, Annie’s Army battles with her!   Morristown Medical Center Blood Donor Services When: Wednesday, August 17th. Appointment Times: 7:45 AM - 5:15 PM. Where: Morristown Medical Center, Department of Blood Donor Services, 100 Madison Avenue, Franklin D Level. ·         Park in visitor's parking, located to the right of the front entrance of the hospital (on Madison Avenue). ·         Bring your parking ticket to be validated. ·         Go through the main entrance, straight down hallway to the Franklin Elevators (near the coffee shop and gift shop). Take the elevators down to Level D. Once you get off the elevators, look for the signs that say Blood Donor Services. The donor center can also be accessed through the Goryeb Children's Hospital entrance on Franklin Street. http://4annie.ahsblooddonorservices.org Or call (973) 971-7444 for an appointment or questions. Please eat a meal and drink plenty of fluids before your blood donation. Bring a picture ID (ex. Driver’s license, passport, etc). All blood types are needed. For leukemia patients like Annie, platelets are particularly important. First-time platelet donors should call 973-971-5621 for more information. Atlantic Health System Blood Donor Services          (973) 971-7444 *Thank you for helping Annie and others in need! Updates on Annie's journey to full recovery are posted on anniesarmy.org or anniesbigchallenge.blogspot.com   Tel: (973) 971-7444 Email: giveblood@ahsblooddonorservices.org