We thought New Years was the only holiday we had not spent in the hospital and then remembered that we actually did spend New Year’s Eve in the hospital last year at Hershey. Emily was determined not to repeat a hospital stay and planned a New Years Eve party this year. She insisted on decorations, so I took her to Party City – she was pretty excited when we pulled in:
Emily: “WAIT…A…MINUTE!! There is a store called PARTY CITY?!?! You mean the whole store is filled with party decorations!?!? WHY didn’t you tell me about this before NOW? This changes my whole life!”
The other day I told Emily that I had already broken my News Years resolution and she said “That’s OK – no one keeps their resolutions. I mean, my resolution was to get a hamster and do you see hamster running around this house?” LOL! We had to explain that a resolution was a goal you make for the new year and not something you want or wish for. She still insists her New Years resolution is to get a hamster (which is not happening – we really don’t need something else to take care of!)
We opted to stay in New Years Eve because Emily’s white cell count and ANC were pretty low (her ANC was only 390). Since her ANC was below 500 she had to get neupogen shots again for 5 days (neupogen is a medicine which helps you make more white blood cells). She had blood work last Friday and her ANC was up to 6500 – good news! Bad news is she’s still testing positive for c-dff. It’s proving to be pretty nasty and resistant to the typical medicine used so she’s switching to a new one that will hopefully help. We kept her out of school last week because of her low blood counts and because so many people are sick but decided to send her back this week. She wasn’t happy to go back after having an extended Christmas vacation! I also started back to work full-time after working part-time until Emily’s health was stable enough, so we both had a hard time adjusting to our new schedule this week. We miss the days we were able to spend playing with legos, doing crafts and playing Barbies. After waiting 7+ years for Emily to develop an interest in Barbies she finally wants to play with them! Woot! I was getting worried she would never want to play Barbies. Two years ago I searched for a Barbie Dream House (the ‘real’ original Barbie Dream House from 1978 that I had when I was little). I finally found one on Ebay and when it arrived it was missing 90% of the pieces and was extremely dirty and discolored (and it smelled). It wasn’t worth playing with so we got rid of it but I’m still looking for a ‘like new’ Barbie Dream House if anyone has one sitting in an attic somewhere! Wow, I totally got off on a Barbie tangent.
Emily is looking forward to a weekend trip to New York City in February. We’ve been asked to speak at The NYC Hope Gala. The Hope Gala is an event that raises funds for the Penn State Dance MaraTHON. If you live near NYC and want to attend you can view ticket info at www.nychopegala.com.
For those of you not familiar with the Penn State Dance MaraTHON that raised $10.69 million for pediatric cancer patients just last year, you can read more about it (or donate!) at www.thon.org. Emily is looking forward to NYC so she can do her two favorite NYC things: 1) ride the ferris wheel at Toys-R-Us, and 2) visit the American Girl store. Our experience at the American Girl store 2 years ago was not pleasantWe are hoping to have a better experience this time. She also wants to see the Statue of Liberty on this trip.
In the post Emily wrote yesterday, she mentioned the MardiPaws parade in New Orleans (it’s a parade of dogs in costume that raises money for several charitable organizations). We were invited there for Emily and Lucy to be Grand Marshals in the parade, but it’s during THON weekend so we had to decline the offer. They already invited us to go next year (March 2014). She’s already thinking of costume ideas for Lucy!
We are still being sent messages from around the world who have heard about Emily’s story. We’re slowly responding to messages but it might take us awhileWe’ve been trying to collect the printed articles about Emily so we have them for her scrapbook. If you have extra copies please send them to us (we have lots of The Centre Daily Times, New York Times, and Philadelphia Inquirer). Emily loves getting comments from all over – we map them out so she gets an idea of how far her story has traveled!
Emily’s next scheduled doctor appointment is on the 28th at CHOP where she will get her bone marrow checked. We had discussed getting her port removed at that visit but because she has had issues with c-diff plus a low white count, and has needed frequent blood draws lately, we’ve decided to delay the port removal until her next visit (which would be in April).
Emily says she’s going to update more often herself because her updates get more “comments” than when Tom or I post! She kept pressing the refresh button to read all the new comments. She does have more interesting things to say so hopefully we can get her to post more often
For those of you who live locally, there is a fundraiser coming up:
The 3rd annual Dan Straw Memorial Bowl on March 2nd from 1pm – 6pm at the Moshannon Valley Superbowl (in Philipsburg, PA). Dan was a coworker of Tom’s who passed away from cancer in 2011. This year the fundraiser will benefit Corban Potter. Corban was diagnosed with neuroblastoma in December 2011 when he was almost 2 years old and is from our town. The cost per person is $20. You can call 814-592-7001 or 814-342-7467 with questions. The guest of honor is Emily – I’m sure she will be there bowling!