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:)