Nine Months – Still in Remission!

Emily Emma Whitehead

Emily had her 9 month follow-up appointment (post CART-19) at CHOP on Monday. She had a bone marrow aspiration/biopsy and spinal tap. No cancer cells were detected! The T-cells are still present in both her bone marrow and spinal fluid and the cells are still working! This was really exciting and such a relief to hear after our scare earlier in the week. Emily doesn’t have to go back to CHOP until April for her one year follow-up visit where she will also get her port out!

We are getting ready to go to NYC this coming weekend to speak at the Hope Gala – it should be a fun weekend! Then the weekend after is what we’ve been waiting 2 years for – the Penn State Dance MaraTHON!! We can’t wait to go. Tomorrow is the last day to send Emily mail for Kid Mail call at THON – to learn more and get directions for mailing letters, see this post.

The photo of Emily is one I was able to take this weekend. She doesn’t like for me to take her photo much anymore (after all the media photos she did the past few months she got a little tired of getting her photo taken!), but she allowed me to take just a few shots and I was able to get this one! I love the way it turned out.

We will be posting tomorrow about an announcement regarding CHOP! We will be posting about it on her Facebook page first.

You will also see a few more photos of Emily 🙂

THON Kids Mail Call

copyright-kari-whitehead-2012-6060 You can send Emily mail at THON for Kids Mail Call! (directions below)

In 22 days we will join 15,000+ Penn State students and other pediatric cancer families for the Penn State Dance MaraTHON! THON is magical and it’s our favorite weekend of the year. For us THON is much more than the money the students raise – they have become family. THON students are amazing and work incredibly hard all year long in their fundraising efforts and bring HOPE, JOY, LOVE, FUN, and SMILES to the kids fighting cancer. We will be posting more about THON over the next three weeks and sharing THON photos and our favorite THON memories.

We are part of the Adopt-A-Family program which means our family was paired with a PSU THON organization that wants to provide support and encouragement to us. Emily was ‘adopted’ two plus years ago by the Penn State Public Relations Student Society of America – PRSSA. They are the BEST! Our organization chose two members to dance in THON this year and they are: Chelsea Slavin and Devin Schiaffino! It takes a lot of physical and mental toughness to get through those 46-hours but we know Chelsea and Devin can do it – they will be EMMA STRONG. Over 700 other Penn State students will be chosen as dancers for the 46-hour no sitting, no sleeping dance marathon to raise money for pediatric cancer and we will be there all weekend to support them.

You can send mail to Emily at THON for Kids Mail Call. What is Kids Mail Call? On Saturday night of THON weekend, Emily will go up on stage and get mail sent to her from students, friends, and families!

You can send the mail to:
Emily (or Emma) Whitehead
c/o THON Kids Mail Call
210 HUB
University Park, PA 16802

You can also send mail and packages to Emily’s dancers to support them through the weekend! Let them know you are a friend of Emily’s. You can send our dancers mail at:

Attn: Mail Call
Chelsea Slavin – #297A and/or
Devin Shiaffino – #297B
210 HUB
University Park, PA 16802

Mail must be postmarked by February 5th. If you work at Penn State you can send the letters to 324 HUB and packages to 327 HUB. If you are not sure what to say, draw a picture or say a couple of words of encouragement! Read here for more info on what to put in letters and packages.

To support THON please visit www.thon.org (you are asked to choose a THON organization to credit – Emily’s org to credit is: Public Relations Student Society of America). All money from THON goes to the Four Diamonds Fund, which directly supports pediatric cancer patients at the Hershey Medical Center in Hershey, PA. Families supported by the fund are referred to as “Four Diamonds Families”. Some of the money goes directly to the patients and their families in the form of gas coupons (which was SO helpful to us back when we had weekly 2-hour round trips to Hershey for Emily’s appts), food coupons to use at the medical center during long stays (also handy since we lived there for months last year), prescription copays, and offsets the cost of treatment that insurance does not cover. The money also helped build the awesome new Children’s Hospital at Hershey Medical Center which opens this month.

Emily’s New Year’s Resolution? A Hamster.

Emily "Emma" WhiteheadWe 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 pleasant 🙁 We 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 awhile 🙂 We’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!