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

    Written Jul 17, 2013 7:29pm

    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: 
    http://medresearch.tumblr.com/b2b
    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:
    http://youtu.be/9QQ9EvQ4PIo

    Around the world: 
    http://www.giornalettismo.com/archives/1015321/la-bimba-guarita-dalla-leucemia-grazie-allhiv/
  • Written Jun 16, 2013 6:58pm

      Last weekend for my birthday, Kari and I went away to Nemacolin Woodlands Resort. It was the first time we stayed away from Emily since she was diagnosed in 2010. We needed some relaxing time together, but I found it really hard to sleep. I don't sleep well at home either, but I can always check on Em when I have nightmares or insomnia. Emily was okay with us going, but asked if she could go next time because she loves to see the animals at the resort. Emily stayed with my parents and was okay until she needed to talk to us and we didn't answer our phones. I turned off my ringer while eating in a restaurant. She had a meltdown and left me the saddest message. We called back right after we ate. She said,"Daddy I just needed to hear your voice". We did get to relax on our trip but we all are more comfortable together as a team and probably won't go away without Emily again for a long time!
      We have been trying to figure out why Emily still has a constant stuffy nose, along with coughing and nosebleeds. We visited Dr. Powell in State College and he set up visits with specialists to see if we can solve the sinus problem and check for any other problems that can occur from all of the chemotherapy Em has had. She is currently taking four medications to help treat whatever is going on. Hopefully things will improve but she's had it since April and it hasn't improved. She did get normal blood test results last week and we are thankful for every day that the T-cells are working. We also ate at (and would like to THANK)  the Texas Roadhouse in State College last Wednesday. They contacted us about doing a fundraiser in Emily's name. They are donating 10% of the food sales that night to our TEAM BELIEVE for the Parkway Run & Walk in Philadelphia this fall. That money will go directly to cancer research at CHOP.
      This weekend we attended the Philipsburg Relay for Life and we were honored that they asked Emily to help carry the banner and lead the survivors lap.  Emily and I each won a donated gift basket as well. We took Emily's friend Manna Potter with us to the Relay and Kari and I just laughed when Emily asked us to leave them walk alone and to give her some space. Cancer affects so many families and it still overwhelms me the amount of support we continue to have even though everybody has their own problems to deal with. We still discuss how important it is to pray for everyone fighting a life threatening illness and Emily really likes helping others that are sick. Emily and I attended church today on Father's Day and I got all choked up thinking about what it would be like for me, and what it is like for all the parents I know, whose kids are now in heaven. It makes it hard to breathe when those thoughts happen but I have learned to deal with it and stay positive. Those thoughts remind me of how fortunate I am to have my daughter with me every day.
      We are returning to Washington DC this week for a national child advocacy day. Emily will get to meet other kids that have fought life threatening diseases from all over the country. We are headed down Tuesday thru Thursday. Wednesday will be a fun day planned for all the kids and then Thursday we will go back to Capitol Hill and meet with Congress members from our home state. We are trying our best to continue to spread the word on where the National Institutes of Health research money is going and the amazing results it is helping produce. We are also telling them all, THANKS for funding it in the past. Without research funds cancer will win. We aren't going to let that happen! We have seen some more kids lose their battles lately and we are praying for their families. We also pray for all current families fighting daily to get their kids or themselves into a permanent remission. We have had more media requests lately about Emily's treatment and we will update everyone as soon as we know for sure when they will take place. THANKS FOR ALL YOUR SUPPORT! WE BELIEVE! ~Tom
  • Lasty Day of Second Grade!

    Written Jun 12, 2013 12:11pm

    Emily’s last day of second grade was on Friday – what a difference between the first and last day!

    We also wanted to let you know that the Texas Roadhouse in State College, PA is holding a fundraiser in honor of Emily on Wednesday, June 12th from 3:00pm – 10:00pm. They will donate 10% of all food sales. We are donating the money to our team – Team Believe – for the Parkway 5k Run & 2k Walk that benefits the cancer center at Children’s Hospital of Philadelphia (CHOP). This is the second year we will have a team at the event. We will be posting more about this but if you would like to join us on September 29 in Philadelphia to run or walk you can join the team or if you can’t join us make a donation.

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Children's Hospital of Philadelphia
34th St & Civic Center Blvd
Philadelphia, PA 19104-4304
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