Emily "Emma" Whitehead :: My Journey Fighting Leukemia » My journey fighting childhood cancer.

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Emily told us back in May that in honor of her 9th birthday she wanted to raise $9,000 to donate to cancer research. When we asked her why she chose that amount she said “because it’s my 9th birthday!” Then she said “well, let’s just make it $10,000 – an extra $1,000 to grow on!”

In honor of Emily’s 9th birthday – and celebrating two years cancer free – we want to help her meet her goal. The goal is to raise $9,000 – er, $10,000 – by the end of September (Childhood Cancer Awareness Month)!!

 

 

 

 

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(continued from Part 1)

The day after Emily’s birthday party we drove to Washington DC for the Leukemia and Lymphoma Society’s (LLS) national conference. We were invited to sit on panel with doctors and scientists so that we could share the patient perspective. Emily sat with us – how many 9-year olds get to sit on a scientific panel with doctors from Penn, Harvard and the FDA?! She drew pictures during the panel - including a picture of T-cells attacking cancer cells. She’s pretty used to these events now and during one of the receptions she left us and said “I’m going to walk around and see who I know”. Usually everyone knows her so she ends up talking to a lot of people. She didn’t even sit with us at dinner – she saw the girls from the Central PA chapter of LLS who she met at another event last year and preferred to sit with them:-)

Emily with the Central PA chapter of LLS.

At the one of the dinner receptions we met two amazing girls who shared their stories:

  •      Erin Zammett Ruddy is an 11-year leukemia survivor. She was diagnosed when she was 23 years old and just 18 months later her sister was diagnosed with lymphoma (she is also a survivor!).
  •      Jessica Melore is a survivor of a massive heart attack (at age 16), heart transplant, leg amputation, and cancer (twice). She is now a motivational speaker. She happened to be sitting beside us at breakfast and started talking about this amazing cancer organization and that she was going to their gala to receive an award – we realized we were both going to the Solving Kids Cancer Spring Gala two days later! So we saw her twice in one week. 

Photo of Emily with Erin and Jessica.

From DC we drove to NYC to attend the Solving Kids Cancer Spring Gala. SKC is an organization created by two families who lost children to neuroblastoma. The organization raises millions of dollars each year to fund research for more effective and less toxic cures for pediatric cancer patients, including the T-cell therapy and other immunotherapy trials. The emcee for the evening was actor Josh Lucas and was co-hosted by fashion designers Bonnie Young, Donna Karan, Carolina Herrera, and others. The event raised more than $700,000! SKC is making a very big difference in funding research to find better treatments for pediatric cancer.

Emily was dressed for the event by Bonnie Young. We met with her the morning of the gala and Emily tried on several dresses before choosing the pink one (we were surprised she didn’t like a purple dress she tried on!). Thank you to Bonnie Young – it was fun for Emily and us (and thank you to Bonnie’s daughter, Celia Babini, for letting Emily borrow your sandals)!

Scott Kennedy and John London who started the foundation


Actor Josh Lucas as the emcee

Emily on stage with auctioneer Sarah Goulet

Emily with Bonnie Young and Donna Karan / Being interviewed with Donna Karan

Emily with our friends Becky and Ariana (Penn State and THON alum!)


Overall, Emily’s birthday week was really fun but maybe a little too busy! We are glad to have some downtime at home to enjoy the beginning of summer – for a little while anyway! We have some projects and events we are working on and hope to share soon.

Happy Summer!

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  • Erica - Just love this! <3 Emily, you and your family have been through so much and we are thankful we were included. It's an honor to have prayed for you when you were sick, and it is still our honor to pray for you now and many happy years to come!! Have fun changing the world! :) ReplyCancel

  • Erin - Wow! She is getting so tall! Happy Birthday Emily (and Lucy!!) I just love her smile!ReplyCancel

  • Annie Mann Peters - Well..Just another example of the power of prayer. …So happy you and your story is making history. ..You go girl…Much love and continued great health. ..And your so lucky…Josh Lucas…Love him!!! Rock on Emily Whitehead. ..♡♡♡♡ReplyCancel

  • melissa patrick - Emily has grown up so much ,loved being part of her birthday celebration. Such a beautiful girl . Think if you everyday emily. Lots of hugs and prayers .ReplyCancel

  • Becky Salman - This was such a fun night!! Miss you guys everyday:(ReplyCancel

  • Emily Troiano - Hope you like your Origami Owl necklace and hope I can meet you some day!ReplyCancel

    • Kari - She loves it – she likes showing everyone the little charms! Thank you so much for sending it :-)

Emily’s birthday was in early May and we started off Emily’s birthday weekend with another trip to Philadelphia. First, Emily was invited to visit the Penn Vet Working Dog Center. The center trains dogs beginning when they are just eight weeks old to search for victims buried under rubble after a disaster such as a building collapse. They train dogs for other purposes as well and the center is currently doing research on training dogs to detect ovarian cancer in women – very interesting! Emily had a chance to see how they train the dogs and how the dogs can find someone buried under a pile of rubble. The center has a pile of rubble that they use and one of the trainers or volunteers will hide in the rubble. Then they let one of the dogs try to find the person and see how long it takes. It was a great experience for Emily to see and she loved hanging out with all of the dogs.

That evening we attended a reception at the Penn Abramson Cancer Center to celebrate Dr. Levine’s appointment of the Barbara and Edward Netter Associate Professorship in Gene Therapy. Dr. Levine grows the T-cells in his lab for the T-cell therapy treatment that Emily had. Emily and a few of the adult T-cell patients were there to help celebrate. They knew Emily’s birthday was the next day and surprised her with a birthday cake(s). It was a very special evening to celebrate Emily’s birthday and honor Dr. Levine who is part of the T-cell team that saved her life.
Emily, Dr. Levine, and two adult T-cell patients
Birthday cake!Emily, Tom, Kari and Dr. Levine
The next morning – Emily’s 9th birthday! – we went to the Philadelphia Zoo and Emily got to feed the hippos. That was interesting. Hippos apparently are not very nice so we had to stand above them and feed them. Interesting facts about hippos: 1) Their skin secrets its own sunscreen and 2) Their skin also secrets it’s own antibiotic if they have an injury.
On our way home from Philadelphia we stopped at the Park Forest Middle School for the State College Mini-THON where they raised a total of $57,182.34! The kids raise money for the Four Diamonds Fund which supports pediatric cancer patients at the Penn State Hershey Children’s Hospital. It’s similar to the big Penn State Dance MaraTHON and the kids dance from 6:00 PM  - midnight. Emily always has a great time and it’s inspiring to see these kids raising money for pediatric cancer. There are mini-THONs held around the state of Pennsylvania all year and in other states now. If you would like to learn more and/or hold a mini-THON in your school (they are in elementary school, middle school, and high school) send us a message and we will connect you with others who have held mini-THONs. It’s also a great high school senior project:-)
The McCauley Family sharing their son Lachlan’s cancer story.In the left photo is Isabella (holding Manna) – Isabella is a leukemia survivor after relapsing and having a bone marrow transplant. On the right is Emily (also hold Manna!). Manna is Emily’s BFF and they are in the same class. Manna’s family is also a Four Diamonds Family because her younger brother Corban was diagnosed with neuroblastoma – he has been in remission for several years now!
After the mini-THON we drove home and prepared for Emily’s birthday party the next day. This year she chose the theme to be Penn State colors and of course there was a bouncy house. She wanted a Penn State cake and the Sweet Art Bakery in Clearfield designed the cake for her and incorporated purple and butterflies. It was chilly and rainy for her party but she still had a great time. I found this “great” game idea on Pinterest where you put a shower cap on and spray it with whipped cream. Then a partner stands away from you and throws cheeseballs, trying to get as many to stick in the whipped cream as possible in a certain time limit. Total Pinterest Fail! Within 30 seconds the kids were spraying whipped cream all over each other AND THEMSELVES and then THREW cheeseballs at each other. It was not the calm game that Pinterest implied it would be. There was shrieking and food flying everywhere but the kids thought it was the best game ever and I guess that’s what counts. Some of the girls had to wash their hair and we had to scrub the whipped cream and cheese powder off their jackets. So parents if you are wondering why your child came home with wet hair and their clothes were covered in sticky orange stuff…this would be why.
Our weekend didn’t end there though! We will continue in the next blog post.
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