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.
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| 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!
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| Her attitude AFTER the shot is totally different... |
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!
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| 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!
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| 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.
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| 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!
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| Thank you to Troop 5617 (Lindsay's troop) - They completed their Bronze Award by collecting donations (well over 100 items) for the Valerie Center |
