Family Advocacy Day: Washington DC

emily-whitehead-june-2013-130620-001-4Last week we attended the Children’s Hospital Association’s Family Advocacy Day in Washington DC. Families from hospitals across the country traveled to DC to advocate on behalf of the hospitals they represent. We were invited to represent CHOP and talked to legislators about the need for more research funding. We told them about Emily’s story to illustrate how research funding is making a huge difference in children’s lives. Without funding for the CART-19/CTL019 trial (the T-cell research) Emily would not be here today. Here are some photos from our trip and links to a few great articles written by the Centre Daily Times:



“Fire with Fire” Goes Viral

The “Fire with Fire” documentary has gone viral over the past 2 days with more than 1,000,000 views on YouTube. We caught this news segment out of New York that talks about the video going viral. The video conveys so much emotion for us in just those few minutes – we still get chills when we watch it. We’re excited so many people are getting to see it to spread awareness about the treatment, the incredible team of doctors and researchers at CHOP/Penn, and childhood cancer. There still seems to be some confusion about the use of HIV in the treatment. A disabled form of the virus was only used in the lab to train the T-cells; HIV was never injected into Emily.


“Fire with Fire”:

Update from Tom

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.