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. . . .