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Emily’s Story

NOTE: We usually no longer update this site but do update on Emily's Facebook page: www.facebook.com/emilybrookewhitehead and on her website: www.emilywhitehead.com. If you would like to read this journal from the beginning (we began this journal on the 1st day she was diagnosed) please click on "Journal" above and then sort it from Old to New. ~Tom and Kari

© Kari Whitehead 2010-2014 All Rights Reserved

Welcome! We've created this page to keep friends and family updated about Emily's progress with acute lymphoblastic leukemia (ALL).  Visit for the latest entries and write in our guestbook!  

Hi, my name is Emily but I like to be called "Emma".  A few weeks after my 5th birthday I started to feel sick and was diagnosed with leukemia on Friday, May 28, 2010.  I was supposed to receive chemotherapy treatments until August 2012.  However, on October 9, 2011 I found out my leukemia relapsed.  I received aggressive chemotherapy through January 2012 but found out two weeks before my bone marrow transplant that I relapsed again on February 4, 2012. Doctors tried chemo through the months of February and March but could not get me back into remission. In April 2012 I was enrolled into a Phase I clinical trial and was the first pediatric patient to receive modified T-cells to help fight my leukemia. My mommy and daddy (Kari and Tom) are writing about me on this site to keep friends and family updated on my progress.  You can read more about this by going to the journal.  I love to read messages from everyone who is thinking about me and saying prayers for me, so please leave a message in my guestbook.  My mommy and daddy read these to me every day! Love, Emma

We have been updating more frequently on Facebook and her blog because it's easier to add photos and share links:

Latest Journal Update

Emily's Going to Disneyland...and Hollywood!

Emily has been doing well and keeping busy the past few weeks. She has an appointment today with Dr. Powell in State College and will get blood work. Everything seems to be going well – she looks good, feels good, and has a lot of energy. Doctor visits and blood work still make us nervous though. She has been having a lot of foot pain. She’s had x-rays and been to a podiatrist but so far nothing seems to be wrong. We think that maybe we stopped physical therapy too early last year and we’ve decided to start taking her again this week. She went to an art camp last week at Penn State and they did a lot of walking – she was usually limping and complaining of foot pain by the end of the day. Hopefully with more physical therapy her foot pain will get better. We’ve been trying to take more walks at home to prepare for all the walking she’s going to to do next week at Disneyland! Our trip has been finalized and we are leaving for California on Saturday for 9 days. We plan to spend a few days at Disneyland, then a few days in San Diego visiting family, then a few more days in LA. Emily will attend Variety magazine’s Power of Youth event on Saturday the 27th. She was invited by Tyler Posey (MTV’s Teen Wolf). The event honors young actors who volunteer their time with various charities. There are 5 actors being honored at the event and they invite families who have been helped by the charities they represent. Tyler works with the Leukemia and Lymphoma Society (LLS) and he saw the “Fire with Fire” documentary that Ross Kauffman directed and invited Emily to the event. LLS has contributed millions of dollars to the CART-19 research trial (T-cell research study). She is really excited! We looked at photos from previous years and several other young actors from the TV shows she watches attend the event. Tom and I are pretty excited too. I mean, we’ve spent many, many, MANY hours watching Disney and Nick TV shows in the hospital with Emily and we think we will be pretty excited if we get to see some of the teen stars too! Is that weird? As parents, the only TV we get to watch is Disney and Nick so we know those shows well We will update with her blood work results as soon as we know on her Facebook page. We know many of you pray and anxiously wait for the results along with us! We expect good results but we’ve been reminded over the past few weeks that things can change when you least expect it and we still cherish each day we have with Emily.

The photo attached to this journal entry is an ad that Emily appeared in for CHOP.

Recent news about the T-cell treatment and/or Emily’s story:

Science: http://www.sciencemag.org/content/340/6140/1514.summary
(Full text available via subscription or if you work somewhere that provides free access (i.e. Penn State) you should be able to read the full article.)

Association of American Medical College: 
Toronto Star:http://www.thestar.com/news/world/2013/07/03/dying_girl_survives_after_injected_with_hiv.html

Other links that YOU have found and sent us (thank you for sharing!):

Dr. June was awarded the Philadelphia Award – this is a great video:

Around the world: