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.....
